My deepest condolences to the family and friends of Donna Summer

Walter Jukes

My uncle, Walter Jukes (Wally) entered into eternal rest today after a brave battle with cancer. Eternal rest grant unto him, O Lord; and let perpetual light shine upon him. May he rest in peace. Amen.

ABC NEWS REPORTS: "Cancer Drug Erases Alzheimer's in Mice"

Cancer drug bexarotene used to treat skin cancer reversed Alzheimer’s disease in mice, according to a study published today in the journal Science. "Alzheimer’s researchers call the results exciting, but remain cautious about the drug’s ability to fight the disease in humans." Copy/Paste or click on this weblink for the full article on ABC News:

Update on FY13 Spending Plan

Here is an update on the Fiscal Year Spending Plan. This information is from the Leukemia and Lymphoma Society's Feb. 10th Advocacy Update Issue.

"Congress Finalizes FY12 Budget; Work Begins on FY13 Spending Plan"

"Late last year Congress finalized the fiscal year 2012 federal budget, averting a threatened government shutdown had the budget process not been completed by the end of the year. The finalized spending bill, while it does not fully address the cancer community's requests, represents a major accomplishment for cancer advocates.
At the start of the FY12 budget process, cancer patients, advocates and researchers faced the prospect of draconian cuts to cancer research and prevention programs, as well as the elimination or consolidation of cancer control programs at the Centers for Disease Control (CDC). However, thanks in part to the actions of The Leukemia & Lymphoma Society's (LLS) advocates, cancer research funding was increased and the CDC's cancer programs were largely preserved.

The National Institutes of Health (NIH) received a $300 million, or 1 percent, budget increase over FY11, bringing the FY12 funding level to $30.698 billion for the world's largest funder of cancer research. The National Cancer Institute (NCI), which is housed under the NIH, received $5.081 billion in the bill; a $23 million, or 0.5 percent, increase over last year's budget.

The CDC's cancer programs were under attack in budget talks all year. Unfortunately, the CDC's Blood Cancer Education Program was a casualty of those attacks and was eliminated from the federal budget. Every LLS chapter across the nation had benefitted from The Blood Cancer Education Program's funding in the form of grants to conduct education and support programs for blood cancer patients, especially the underserved. LLS will seek the restoration of this important program in FY13.

Funding for additional programs of interest for cancer advocates includes: the National Institute on Minority Health and Health Disparities (NIMHD) received $276 million, a $67 million increase (32 percent) over FY 2011 and the Health Resources Services Administration's (HRSA) Title VIII nursing programs received $232.287 million in the FY 2012 bill, a $10 million decrease (4 percent) from FY 2011. Unfortunately, funding for the Patient Navigator Program was also eliminated.

It is also important to note that the bill eliminates the National Center for Research Resources (NCRR) and establishes the National Center for Advancing Translational Sciences (NCATS). LLS has championed the establishment and funding of the NCATS program, which seeks to speed the translation of basic scientific discoveries to real world applications through public-private research partnerships.

Focus on the federal budget has already shifted to the FY13 spending bills, where the greater cancer community will once again advocate for a robust increase in funding for the NIH and NCI, among other critical programs. LLS and One Voice Against Cancer (OVAC), a broad coalition of cancer-related organizations representing millions of Americans, will work to ensure that the Administration and Congress make funding for cancer research and related programs a priority in FY 2013.

Specifically, OVAC is making the following requests important to LLS's patient base in the FY13 budget:

National Institutes of Health (NIH)
$32.7 billion (6.5% increase)

National Cancer Institute (NCI)
$5.3 billion (5.5% increase)

National Institute on Minority Health and Health Disparities (NCMHD)
$238 million

Centers for Disease Control and Prevention (CDC)

National Comprehensive Cancer Control Program: $50 million
National Program of Cancer Registries: $65 million
Geraldine Ferraro Blood Cancer Program: $6 million
Health Resources and Services Administration (HRSA)

Patient Navigator Program: $10 million
Title VIII Nursing Programs: To Be Determined
Department of Health and Human Services Office of the Secretary

Childhood Cancer Research and Awareness: $30 million
Congress' past support for cancer research and control programs has led to an overall reduction in cancer incidence and mortality. It is therefore critical that the nation's commitment to cancer research funding be maintained. Federal support for research must be sustained at a level that will allow progress to continue. LLS and OVAC will advocate that Congress increase cancer research funding in FY13 at levels that will allow existing and new research projects to be funded, support services to be provided, and survivorship services increased; and the help of LLS's advocates will be critical in this pursuit."

UPDATES!

Here are some updates:
**I and other performers participated in the 58th Eagles Cancer Telethon on January 14th; the telethon raised over 830,000, a record breaker! "This money is used to help fund cancer research at the Mayo Clinic, Hormel Institute for Cancer Research and U of M Cancer Research. These institutes continue to work for discoveries leading to prevention or a cure for cancer."

**The LLS Updates include: "LLS drive research in particular areas where patients have desperate needs for more effective treatments, particularly patients with relapsed refectory myeloma.
LLS fund Dr. Carl June, M.D., who genetically engineered immune cells to be better cancer fighters, producing remissions for patients whom standard therapies never worked.
LLS create strategic partnerships with companies like Avila therapeutics to advance a new therapy showing great promise for patients with lymphoid cancers."

**The Arizona Myeloma Network Updates include: "October 22nd was the 7th Annual AzMN/UA Charity Golf Classic at the McCormick Ranch Golf Club in Scottsdale. There were 225 golfers from the United Association of Plumbers and Pipefitters, including local sponsors and golfers. It was our most successful fundraiser ever and we appreciate all who participated."

**The NCI Updates include: "Next month, we will begin our ninth year of publication. Since launching in 2004, we have published nearly 275 issues and over 3,800 cancer research news stories, all of which can be accessed through our archive/search page." (This quote is about the NCI Cancer Bulletin).

40-Year War On Cancer

On December 23, 1971 (forty years ago), President Nixon signed the National Cancer Act, beginning the War on Cancer.

My deepest condolences to the family and friends of Henry Catto. Mr. Catto passed on Sunday, December 18

Henry Catto, diplomat and vice chairman of the Aspen Institute, passed away from complications of leukemia on Sunday. He was 81. He was an extraordinary person and his contributions to humanity were remarkable. May he rest in peace.

Please copy/paste this weblink into your address bar:
http://www.aspentimes.com/article/20111220/NEWS/111219834/1001/NONE&parentprofile=1058

Super Committee Does Not Reach Agreement on Spending Cuts

Update from the LLS:
"The congressional "super committee" formed after passage of the Budget Control Act and charged with drafting legislation that resulted in savings of at least $1.2 trillion failed to reach their goal by the November 23 deadline."

Please copy & paste the URL below into your address bar and urge Congress to protect and support cancer research funding at the National Institutes of Health (NIH) and National Cancer Institute (NCI) in the FY 2012 budget process. Thank you.
http://www.lls.org/waystohelp/advocate/

UPDATES!

The Leukemia and Lymphoma Society (LLS) Minnesota Chapter held their annual fundraiser 'Light The Night' in Minneapolis. This year celebrated my family's 10th year being a team for the event! The fundraiser raised $540,000.00 (and counting). Thank you to everyone who donated. Every donation is appreciated, great things have been achieved by the LLS funded researchers including the following:
LLS reports:
'One of the researchers The Leukemia & Lymphoma Society funds, Dr. Carl June, has started some testing for gene transfer therapy to create T-cells that can kill cancer cells. It is reported that two patients with chronic lymphocytic leukemia achieved full remission and one achieved partial remission through this therapy.'
LLS also reports:'Ralph M. Steinman worked for decades to prove that cells he discovered in the immune system were integral to the way the body fended off disease, ultimately using his research to fight his own pancreatic cancer. Steinman was awarded the Nobel Prize in medicine, three days after he died. Steinman's discovery of what he named dendritic cells, which regulate and adapt the immune system's defense mechanisms, "laid the foundation for an area of therapy development that's just coming into its own, called immunotherapy," said Louis DeGennaro of The Leukemia and Lymphoma Society, which helped fund Steinman's early work.'

Madelaine Stoen Update

Please copy and paste the link below to read the update of my relative, Madelaine Stoen, and her brave journey through pediatric cancer.
http://womenincmagazine.com/2011/06/guardian-angels-madelaine%e2%80%99s-journey-through-pediatric-cancer/

Urge Senate Appropriators to Commit to Funding Cancer Research

Note from the LLS:
"Sens. Robert Casey and Richard Burr are asking their colleagues to join a letter urging Senate appropriators to make a strong commitment to the NIH in this year’s budget process. Please take one minute to send an email to your senators asking them to sign onto the Casey / Burr “Dear Colleague” letter and support NIH funding. You can also call the congressional switchboard at (202) 224-3121 and ask to speak to your senators to deliver this same message."

Please copy and paste this link to find how to contact your representative by email:
http://www.capitolconnect.com/lls-widget/alertdetail.aspx?AlertID=202

FY 12 Appropriations Update

CureSearch For Children's Cancer has the following update on FY 12 Appropriations:

"On May 11 the Senate Health and Human Services Appropriations Committee convened a hearing on the FY12 budget for the National Institutes of Health (NIH). Francis Collins, MD, director of the NIH testified and was accompanied by four NIH institute directors, including Harold Varmus, MD, director of the National Cancer Institute. During the hearing, subcommittee member and childhood cancer advocate Senator Jack Reed (D-RI) asked a question regarding support for pediatric cancer research. Dr. Varmus indicated that children's cancer research receives approximately 4% of NCI funding and that findings from non-child specific cancer research can benefit the children's population as well. He went on to say that while the incidence of children’s cancer has increased approximately 30% in recent years, survival rates are also significantly increasing. While noting this is a positive trend, Dr. Varmus iterated the need to better understand, treat and eliminate effects of cancer and treatment, which includes a high incidence of secondary cancer in patients' when they are in their 20s and 30s."

Copy and paste this link into address bar to watch the entire hearing:
http://www.kintera.org/TR.asp?a=hgILIYOEJlJUJ9L&s=8eKLL0NtF7LIJVNyFpE&m=fiKSK1MKLoLVLcI

Update on FY12 budget for the National Institutes of Health (NIH)

The following update is reported by CureSearch For Children's Cancer:

FY 12 Appropriations:

"On May 11 the Senate Health and Human Services Appropriations Committee convened a hearing on the FY12 budget for the National Institutes of Health (NIH). Francis Collins, MD, director of the NIH testified and was accompanied by four NIH institute directors, including Harold Varmus, MD, director of the National Cancer Institute. During the hearing, subcommittee member and childhood cancer advocate Senator Jack Reed (D-RI) asked a question regarding support for pediatric cancer research. Dr. Varmus indicated that children's cancer research receives approximately 4% of NCI funding and that findings from non-child specific cancer research can benefit the children's population as well. He went on to say that while the incidence of children’s cancer has increased approximately 30% in recent years, survival rates are also significantly increasing. While noting this is a positive trend, Dr. Varmus iterated the need to better understand, treat and eliminate effects of cancer and treatment, which includes a high incidence of secondary cancer in patients' when they are in their 20s and 30s."

Please Contact Your Member Of Congress

The LLS is asking us to call our members of Congress and ask them to support the NIH and NCI. Here are the LLS talking points:

• I am calling to express my strong opposition to funding cuts for the National Institutes of Health and the National Cancer Institute.
• As recent news reports have highlighted, nearly 1 in 20 Americans is now a cancer survivor. The increase in the number of people surviving a cancer diagnosis is the result of Congress’ past support for research and prevention.
• The funding cuts for the National Institutes of Health and the National Cancer Institute put this progress at great risk.
• Cuts of the magnitude proposed by House Republicans could result in National Cancer Institute funding 60 percent fewer new and competing research grants than it did last year.
• Cuts of the magnitude proposed by House Republicans could force the National Institutes of Health eliminate at least 40 phase III cancer clinical trials, fully one-third of all phase III trials open to cancer patients.
• Nearly 85 percent of federal funding for NIH is spent on research projects at local research facilities across the country. According to NIH, a total of more than $22 billion went to nearly 53,000 research grants in every state and virtually every congressional district across the country last year.
• The impact of the cuts being considered will result in job losses and significant negative impact on state and local economies.
• The news that there are now nearly 12 million cancer survivors living in the United States is confirmation of the benefits of federal support for research and prevention. However, for too many cancer patients, survivors, and their loved ones, our progress against certain cancers has been incremental at best.
• I strongly encourage Congress and the Administration to work together to not cut funding for NIH and NCI.

Here is the weblink to copy and paste to find your member of Congress:

http://t.democracydirect.com/?ti_dn__=2978a241-a135-4478-8119-2a808f834cf8&__u_idz=20090225_054386&__turl=http%3a%2f%2fwww.lls.org%2fwaystohelp%2fadvocate%2fresources%2flegislatorsearch%2f

Urgent Email from Stand Up To Cancer

SU2C sent this note:

"Our scientific partners, the AACR, have brought an emergency situation to our attention. We need the help of the Stand Up To Cancer army to stop a grave government budget cut that will reduce government funding for cancer research and new treatment options for patients.

Pressure is mounting on Capitol Hill. By Friday, lawmakers must negotiate a final compromise on spending priorities for the remainder of the fiscal year or face a government shutdown.

Biomedical research has been targeted for severe spending cuts-and unless you act now, the NIH could be cut by as much as $1.6 billion.

Congress needs to hear the message loud and clear that cuts to NIH research will slow progress and squander scientific potential to the detriment of our nation's health, our fragile economy, and our global competitiveness. Join your colleagues in calling or e-mailing Congress today. Your voice can make a difference at this crucial time.

CONTACT CONGRESS NOW!"

Please copy and paste this link into your web address tool bar:

http://news.standup2cancer.org/sb40/c4.php?SU2C/7658569/5596/H/N/V/http://www.capwiz.com/aacr/issues/alert/?alertid=38698501&PROCESS=Take%2BAction

My deepest sympathies and condolences to family and friends of Geraldine Ferraro

May you rest in peace.

Geraldine Ferraro suffered from Multiple Myeloma, a form of blood cancer.

The following information is from eHow Health:

"The Hematological Cancer Research Investment and Education Act of 2001 was an amendment to the Public Health Service Act to allocate yearly funding to the expansion of blood cancer research programs and the dissemination of disease information to patients and the public.

Geraldine Ferraro Cancer Education Program:

The act authorized funding for the Geraldine Ferraro Cancer Education Program to provide blood cancer education and information to patients, physicians and the general public. Funding in the form of grants was given to nine organizations, including the Multiple Myeloma Research Foundation and the Lymphoma Research Foundation."
Copy and paste this link into your web browser for more information:
http://www.ehow.com/facts_6808892_hematological-research-investment-education-act.html

NIH NEWS

"The National Institutes of Health is expanding their role in translational research and the treatment development process with the announced creation of the National Center for Advancing Translational Sciences. The mission behind the new agency is to target public sector research that will facilitate private industry interest and investment."
As reported from the Leukemia and Lymphoma Society

Cancer Advocates Will Go To Capitol Hill

Update from the Leukemia and Lymphoma Society:
'The Leukemia & Lymphoma Society is joining CureSearch and the Children's Cause for Cancer Advocacy and other national pediatric cancer organizations for the Children's Cancer Awareness and Advocacy Day on March 16-17 in Washington, DC. During meetings with their representatives, advocates will urge their members of Congress to support legislative efforts that affect pediatric cancer patients and their families.'

Way to go all the advocates!! Policy-makers, please give them your complete attention for this important cause. Thank you. Natalie.

BIOTECH UPDATE

Here in Minnesota, I am hoping for the biotech park. It has been reported that Steven Burrill has a "firm commitment" for $1B to back biotech park

The following article in part was in fiercebiotech.com :

'After facing a rising level of skepticism in Minnesota over the fate of his plans for a billion-dollar biotech park, the high-profile G. Steven Burrill tells the hometown newspaper in Minneapolis that he's oh-so-close to getting the financing lined up for the audacious development.
"We have a firm commitment for that billion dollars from a single investor," Burrill tells the Minneapolis Star Tribune. "We have made a lot of progress recently, and we're optimistic that we'll get it done." Burrill, who works with a global network of investment groups, adds he's in negotiations with a sovereign wealth fund--which he declined to identify.'

Fiercebiotech.com also recently reported that NIH Chief Francis Collins is getting a 'little frustrated'. Here is the article in part:

'Pronouncing himself "a little frustrated" with pharma's apparent inability to rapidly follow up on scientific breakthroughs with a new generation of therapeutics, NIH chief Francis Collins is pushing ahead with ambitious plans to create a new center for translational medicine that will do some of the early-stage work for the drug development industry.
Collins' plan, endorsed by HHS Secretary Kathleen Sebelius and outlined over the weekend by the New York Times, is to bring together $700 million in R&D work under one roof at the National Center for Advancing Translational Sciences, where government scientists will pursue a billion dollars in funding to push the projects through the Valley of Death. Collins' blueprint calls for scientists to get enough proof-of-concept data in hand to whet pharma's appetite, spurring them to step in and finish the discovery work needed to obtain an approval.'

Hopefully we can all work together to make the biotech in Minnesota happen soon, to help with scientific breakthroughs.

Congress Passes Continuing Resolution

On Dec. 21, Congress passed a short-term “continuing resolution” that will fund nearly all federal programs at their 2010 fiscal year level through its expiration on March 4. Unfortunately, the continuing resolution does not include any increases for the National Institutes of Health (NIH), National Cancer Institute (NCI) or any agency that funds cancer research, prevention, education and survivorship programs.

Thank you to everyone who contacted their elected officials asking for their support to increase funding for cancer research.

Please Ask Your Senator to Pass Omnibus Funding Bill and Increase Cancer Research Funding

The omnibus bill would provide the National Institutes of Health with a budget of nearly $32.8 billion, a $750 million increase over last year's budget, which includes $5.2 billion for the National Cancer Institute and $50 million for the Cures Acceleration Network.
Please take a moment to copy and paste the following link to contact your Senator. Thank you.
http://www.capitolconnect.com/lls/alertdetail.aspx?AlertID=153

My Deepest Condolences To The Family Of Elizabeth Edwards

May she rest in peace after her brave battle with cancer.

Please Ask Your Representative to Support Increased Cancer Research Funding

Please copy and paste the below link and ask your representative to support increased cancer research funding. Please urge them to include $32 billion for the National Institutes of Health in an omnibus budget bill.
http://www.capitolconnect.com/lls/alertdetail.aspx?AlertID=152

Clinical Hematology and Oncology 2011: The 8th Annual Mayo Review

Here is the website for the 'Clinical Hematology and Oncology 2011: The 8th Annual Mayo Review'. It will be held January 12-15 in Scottsdale, AZ. I have attended this wonderful Mayo Clinic meeting in the past, it was very informative. Copy/paste this website for more info: http://www.mayo.edu/cme/hematology-and-oncology-2011s273

National Press Foundation's Cancer Issues 2010

I attended the National Press Foundation's (NPF) Cancer Issues 2010 meeting this week in Washington, DC. The meeting was wonderful and had excellent speakers including professors of medicine & oncology, directors of departments (including from Georgetown University Medical Center, and other places also), chief medical officers, senior science writers, deputy director of the NCI, senior investigators, a survivor/advocate, and a reporter from the Washington Post. I will list the weblink below so you can read more about this excellent meeting and speakers. You can download some of the speakers powerpoints also.
Copy/Paste this web link into your web browser:
http://nationalpress.org/programs-and-resources/program/cancer-issues-2010/

Some highlights of the meeting include the following:

Minetta, Liu, Assistant Professor, Medicine and Oncology, Lombardi Comprehensive Cancer Center spoke about the need for an individual approach to cancer treatment to maximize benefit and minimize the cost. She pointed out that the U.S. gives more chemo than other countries; if there is an individualized approach it would help cut down on overtreatment.
__________________________________________

Carol Taylor, Ph.D., MSN, RN, Director, Center for Clinical Bioethics, Georgetown University Medical Center spoke on the topic of 'End of Life Issues in Cancer Care'. She pointed out the current hot topic of the 'death panel' (as Sarah Palin called it). The case of Terri Schiavo was discussed, which was a big case in end of life issues. Dr. Taylor suggested reading 'Letting Go', which is about what should medicine do when it can't save your life. It was published in August of 2010. Another suggestion was watching 'The Lady and The Reaper' on youtube.

Dr. Taylor talked about three universal needs, which are:
1. Meaning and purpose
2. Forgiveness (or forgive others)
3. Love and belonging, to love and be loved.

Dr. Taylor talked about paradigms on death and dying including
1. Death as a natural part of life
2. The medicalization of dying....70% of Americans die in a hospital.

Other issues talked about were 1/2 of conscious patients had moderate to severe pain at least 1/2 the time before death. 21% complained the dying person was not receiving enough respect.

Dr. Taylor mentioned the TENO study in 2004 which said 1 in 4 people did not receive enough pain medication.

__________________________________________

Otis Brawley, Chief Medical Officer, American Cancer Society (remotely), Professor, Emory University School of Medicine and Emory Rollins School of Public Health spoke about the facts and numbers of cancer including the following:

Cancer kills more than TB, AIDS and Malaria combined.

In 2009 the U.S. spent 2.53 trillion on health care.

The growth in cancer incidence and mortality is due to increasing of aging population and western habits (such as smoking).

Brawley also pointed out that obesity from high calorie intake and lack of physical excercise will cause more cancer than tobacco by 2030.
Brawley also pointed out the following numbers of obesity:
Breast, prostate, colon, uterine, and pancreas cancer risk is increased with obesity.
1/3 of adults are couch potatos.
35% are obese
60% are overweight
20% of kids ages 6-11 are obese.

__________________________________________

Aziza Shad, M.D., Amey Distinguished Professor of Neuro-Oncology and Childhood Cancer Director, Lombardi Cancer Center, Georgetown University Hospital talked on the issue of Pediatric Palliative Care.
Some facts presented by Dr. Shad are the following:
1. 50,000+ children die every year in the U.S. from cancer, AIDS and other chronic illness.
2. More than 500,000 children live with life threatening, complex medical conditions.
3. Wolfe found 89% of children who die of cancer suffer in the last month with fatigue, pain and dyspnea.
4. 80% of cancer patients have pain.

Dr. Shad pointed out that no child should die in pain. More funding is needed for palliative care (preparing to die) and allow natural death.

__________________________________________

Claudine Isaacs, M.D., FRCPC, Director, Clinical Breast Cancer Program Lombardi Comprehensive Cancer Center had the topic of New Treatment Options for Breast Cancer (Risk Management, BRCA mutation). Her information is the following:

Metastatic Breast Cancer spread beyond the breast and local lymph node area to distant sites (lungs, liver, bones, skin). It is incurable with current treatment. The median survival is 2 to 3 years. There is survival improvement. Some option treatments were presented:
1. PARP Inhibitors (blocks mechanisms)
2. Bevcizumab (targeting angiogenesis in MBC; blocks growth factor, ECOG did a trial
3. Endocrine Therapy Resistance
4. CYP2D6 (San Antonio may be doing a study on this)

___________________________________________

(This session below was at the National Cancer Institute)
Mark Schiffman, M.D., Chief Interdisciplinary Studies, Environmental Epidemiology Branch; Natural History of HPV, including co-factors, chronic inflammation and hormones.

* 1 in 14 cancers in the world are due to the HPV virus.
* HPV 16 causes 1/2 cervical cancer.
* HPV 18 is another bad cancer causing virus.
* HPV infection is common; persistence and precancer are uncommon
* Infections usually go away in months to 2-3 years.
* It is persistence that leads to precancer, it can then invade to cancer.
* Screening too often is bad. Suggested screening is 3 years, starting at age 30, many of the viruses go away on their own so should not be screened earlier. Europe suggests 5-7 years for screening.
___________________________________________

(This session below was at the National Cancer Institute)
Diane Solomaon, M.D., Senior Investigator, Breast and Gynecologic Cancer Research Group: Screening pap smears, and HPV testing.

Failures in Cervical cancer screening are due to:
1. Lack of screening.
2. Lack of appropriate follow-up
3. False negative test results (perhaps the machines or slide doesn't read it).

To reduce cervical cancer mortality, we need to reach women underscreened including the elderly, minorities, those in rural communities and the poor.
_____________________________________________

(This session below was at the National Cancer Institute)
Allan Hildensheim, Ph. D., Chief, Infections and Immunoepidemiology Branch: Global Impact of HPV-related cancers: Studies in Oregon, Costa Rica and beyond.

Dr. Hildensheim spoke of the two HPV vaccines:

A study of GSK (GlaxoSmithKline) showed HPV 16 and GSK HPV 18 caused 70% of cervical cancer.
A study of Merck showed HPV 16, HPV 18, HPV 6 and HPV 11 caused 90% of genital warts.

For vaccines, both are given in three doses over six months. The FDA licensed Gardasil for young women and girls in 2006. In 2009 the FDA licensed Gardasil to prevent warts in males. Both vaccines are highly effective at preventing cervical precancers.
_______________________________________________

(This session below was at the National Cancer Institute)
John Schiller, Ph.D., Head Neoplastic Disease Section; Prevention, microbicides and future directions.

Dr. Schiller spoke on microbicides, topically applied that prevent infections.

He spoke of two trials being planned to see if carrageenan was effective as a APV microbicide.

There is a leading trial by Mark Einstein at the Albert Einstein University to test the microbicide Carraguard® against the human papillomavirus (HPV), which causes cervical cancer. The research will evaluate the efficacy of Carraguard® – a clear gel made from the seaweed derivative carrageenan – in preventing new HPV infections in women.
_______________________________________________

Nilofer Azad, M.D., Assistant Professor, Gastrointestinal Oncology, Sidney Kimmel Comprehensive Cancer Center at John Hopkins spoke on the topic of epigenetics.

Dr. Azad was a member of a 'Dream Team' for Stand Up To Cancer. The following information on lung cancer was presented:

With lung cancer, if all things are exhausted, life expectancy is three months. Some trials have helped extend to 8.6 months.

In one trial there were 28 patients, two had very good responses to treatment (but the hope was to have 10% have good responses to treatment).

With colon cancer, stage 4 life expectancy is two years.

With leukemia, one mutation drives the disease.

In epigenetics (the study of changes in gene), DNA sequence is not changed or mutated, but just turned on or off.

_______________________________________________

Norma Kanarek, Ph.D., Associate Professor, Johns Hopkins Executive Director, MD Cigarette Restitution Fund at JHMI spoke on the topic of cancer and minorities.

Dr. Kanarek said cancer and minority reports could be found at The Office of Minority Health (HHS). For charts she recommended the website statecancerprofiles.cancer.gov . She also recommended the SEER Cancer Statistics Review for a good source of information.

Dr. Kanarek pointed out that cancer is declining since the early 1990's.

Some facts are:

* 1 in 2 will be diagnosed with cancer.

* 1 in 3 will die from cancer.

_________________________________________________

Suzanne Lindley, survivor, advocate, spoke on the topic of living with cancer. Suzanne's session was incredibly moving. Her courage to help others living with cancer is admirable. I will put a paragraph about her below that can be found on the canceradvocacy.org so you can read more about her:

"When I was 31 years old, I was diagnosed with stage IV colon cancer and told I had six months to live. I didn't accept that verdict: instead I sought out other opinions and began taking the only chemotherapy drug for colon cancer that was available at the time. That was 10 years ago.
Since I was diagnosed in 1998, several new treatments for colon cancer have been discovered, and I have had them all, including five new chemotherapies, the gamma knife, Sir-spheres, cyberknife, external beam radiation and intrathecal chemo for spinal metastases. Those are foreign words to most readers, as they were for me when I researched them all myself. If I had had a written care plan, with all the options outlined before undergoing treatments, it would have helped me make decisions and give me an idea of what to expect going forward. Instead, I've had to navigate the complex path of treatment possibilities on my own.
I have had numerous surgeries and side effects, and over the last decade my care has been conducted by several facilities and at least a dozen different physicians. There is no written summary of all the treatment I have received over the last ten years, so I've compiled copies of my medical records from several different facilities and physicians in four 3-inch binders. These are important because many cancer treatments produce late effects - conditions that show up long after treatment has been administered and can include damage to vital organs such as the heart, lung, bones, joints, bone marrow, nervous system and more. Some cancer survivors are at higher risk for serious infection, infertility, thyroid dysfunction, hearing loss, premature osteoporosis, anxiety, depression, and second cancers - conditions they and the other members of their healthcare team can monitor if they have a written treatment summary and follow-up care plan.
In the spring of 2008, I was again told my journey was coming to an end, but I have already outlived that prognosis. I still receive treatment, but I still have no written plan for my care going forward. It's scary –for instance, I once almost lost a leg due to a drug interaction that could have been avoided with a written care plan.
Hearing that you have cancer is enough to comprehend. No one should have to concern themselves with the amounts or types of chemo, procedures, or radiation they have received but should instead be provided with clearly delineated plans for moving forward."
_________________________________________

Jeremy Moore, Senior Manager, Science Communications, American Association for Cancer Research. Mr. Moore spoke on the topic of reporting on scientific journal articles. He spoke on the following issues:

* In 2010 cancer surpassed heart disease as the leading cause of death.
* Cancer affects 1 in 3 women and 1 in 2 men.
* The NCI (National Cancer Institute's budget in 2009 was 4.96 billion, in 2010 the NCI budget was 5.1 billion. In 2011 the ask for the budget was 5.26 billion.
* Everyday 75 clinical trials and 11 systematic reviews are being published.

Mr. Moore mentioned the following publishers:
* New England Journal of Medicine
* Journal of the American Medical Association
* Cancer (from American Cancer Society)
* Journal of Clinical Oncology (ASCO)
* Cancer Research (AACR)
* Clinical Cancer Research
* Cancer Epidemiology, Biomarkers and Prevention
* Cancer Prevention and Research (AACR)
* Molecular Cancer Research
* Cancer Discovery (AACR)
_________________________________________________

John Marshall, M.D., Chief Division of Hematology/Oncology, Georgetown University Hospital spoke on the topic of developing drugs to treat cancer and clinical trials, and what journalists need to know.

Dr. Marshall suggested reading the article 'Fighting A Smarter War Against Cancer'. He talked about how the larger the clinical trial was, the smaller the difference. Gleevic was discussed (Imatinib) Imatinib is used to treat certain types of leukemia and other cancers of the blood cells. It is also used to treat gastrointestinal stromal tumors.

Dr. Marshall also pointed out that the #1 way to keep cancer from coming back is exercise.
_________________________________________________

Nurith Celina Aizeman, reporter, Washington Times, spoke on the topic of health care reform and cancer.

Ms. Aizeman suggested the book on health 'Landmark', a collection of essays written by Washington Post reporters that gives the history of the work and a summery of the legislation put into the passing of the health care bill in 2010.

Ms. Aizeman also talked about the controversial no more life limits (limiting how much insurance one can receive) with individual health care plans.

Other issues discussed were the HHS preventive care measure, and provision for long term care, and the issue that individual mark plans annual limits may be phased out by 2014.
______________________________________________

Breaking News: House Passes Blood Cancer Awareness Month Resolution

Great news!
Leukemia and Lymphoma Society reports:
"The House of Representatives has heard the pleas of The Leukemia & Lymphoma Society's advocates and on the evening of Wednesday, September 22, passed a Congressional resolution (H. Res. 1433) naming September 2010 as Blood Cancer Awareness Month!"

Leukemia and Lymphoma Society Breaking News To Pass Along To My Blog Readers!

I received this wonderful news today from the LLS (and thank you to everyone who helped support this cause):

Dear Natalie,

Congratulations! Your perseverance has paid off! The Congressional resolution declaring September 2010 as Blood Cancer Awareness Month (H.Res.1433) has reached the 100 co-sponsor milestone needed for it to be considered by Congress.

September has long been recognized as Leukemia & Lymphoma Awareness Month, but this Congressional resolution adds an official emphasis that helps advance our cause. By raising awareness and support for blood cancers within the halls of the Capitol we strengthen our case for more cancer research funding, renewed funding for the Blood Cancer Education Program and other programs vital to the health and well-being of all blood cancer patients.

This success is a result of the dedication and commitment of LLS's advocates across the country. Volunteers have championed this cause since it was initiated in June and the barrage of emails, phone calls, and newspaper opinion pieces during the August Call for Cures Campaign had a tremendous impact.

We are also grateful for the help of Reps. Walter Jones (R-NC) and Betsy Markey (D-CO), the resolution's original sponsors, who took to the floor of the House of Representatives and urged their colleagues to co-sponsor the resolution.

The resolution now goes before the House Energy and Commerce Committee for approval before being sent to the House floor. Thank you and congratulations!

Blood Cancer Awareness Month Update

Copy and paste this link to see who is supporting the H. Res. 1433 (expressing support for designation of September 2010 as Blood Cancer Awareness Month).
http://www.govtrack.us/congress/bill.xpd?bill=hr111-1433

Update note from the Leukemia and Lymphoma Society:

"Thanks in part to the support of LLS advocates, the Geraldine Ferraro Blood Cancer Education Program has been retained in the Senate's FY 2011 budget!

The program has allowed The Leukemia & Lymphoma Society (LLS) and other patient organizations to support patients in their treatment and care -- especially the underserved -- and had been cut from the White House's budget proposal when it was sent to Congress at the beginning of the year. Fortunately, the program was spared when the Senate appropriators retained the program's funding. Without this assistance, LLS and other patient groups would have needed to cut assistance programs to the most vulnerable blood cancer patients.

Thank you to all of the advocates who took the time to write, call and visit their senators to express support of this important program; proof positive that your efforts can make a difference! LLS will continue to inform volunteers of the funding prospects of programs and institutions affecting blood cancer patients and researchers as the appropriations process continues."

LHHS UPDATE

The House Labor, Health and Human Services, and Education (LHHS) Appropriations Subcommittee is expected to mark up the FY 2011 LHHS Appropriations bill on July 15th. The LHHS Appropriations bill includes funding for important myeloma programs at the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention (CDC).

Please Support National Blood Cancer Awareness Month Resolution

Write your representative today and ask that they become co-sponsors of the Blood Cancer Awareness Month resolution, copy and paste this weblink into your web address bar for more info: http://www.capwiz.com/myeloma/home/

Please Tell Your Senators To Support Biomedical Research

Senator Bob Casey (D-PA) is circulating a Dear Colleague requesting $35 billion for the National Institutes of Health for fiscal year (FY) 2011, an 11.9% increase over FY 2010. The NIH is the world's leading research institution and the single largest source of biomedical research funding in the world, but the NIH has been losing purchasing power over the last few years as its funding has not kept up with inflation.

Harold Varmus, M.D., to serve as Director of the National Cancer Institute (NCI)

The NCI Bulletin reports: "Today, President Barack Obama announced his intent to appoint Harold Varmus, M.D., to serve as Director of the National Cancer Institute (NCI).
In an e-mail to the NCI staff, Francis Collins, M.D., Ph.D., Director of the National Institutes of Health, said that Varmus "brings unmatched expertise at all levels - not only in cutting edge scientific research, but also as a leader in the development of strategies for improving patient care, in scientific education and training, and in the design of novel public-private partnerships."

Representative David Obey (D-WI) announced his departure on May 5

The IMF reports: "After more than 41 years in Congress and in his fourth year at the helm of the House Appropriations Committee, . The veteran Wisconsin Democrat had been facing a tougher-than-usual re-election battle in a bid for a 21st term, but he said that did not influence his decision. A fiery advocate of liberal causes, he voiced frustration in his speech that he was unable to achieve all that he sought to accomplish but he felt it was time to leave. Obey's decision to resign at the end of the 111th Congress comes amid political battles that have so far delayed work on the annual spending bills.

Chairman Obey is a long time advocate for cancer issues and will be missed. Should the Democrats retain the majority in the November elections, Representative Norm Dicks (D-WA) will take over Obey’s seat as Chairman of the House Appropriations Committee and Representative Nita Lowey (D-NY) will be Chair of the LHHS Appropriations Subcommittee."

Urgent message from the Leukemia and Lymphoma Society

From the LLS:

CDC Blood Cancer Research Program Eliminated

President Barack Obama recently released his FY 2011 budget proposal, which includes some serious costs to cancer patients. Two CDC cancer programs were eliminated from the president's budget: the Geraldine Ferraro Blood Cancer Education Program and the Gynecologic Cancer Education and Awareness Program, better known as Johanna's Law.

The blood cancer education program, was funded at $4.7 million in FY 2010. Since its inception in 2004, The Geraldine Ferraro Blood Cancer Education Program - named in honor of the former Congresswoman, vice presidential candidate, and multiple myeloma survivor - has funded nearly $35 million in grants to organizations, including The Leukemia & Lymphoma Society (LLS), for programs that benefit blood cancer patients. Programs instituted by LLS with this funding include an educational program for patients living with myeloma, a national forum educating oncology nurses on the management and treatment options for older patients living with blood cancer, and programs to reach underserved patients in both urban and rural settings..

These programs allowed LLS and other blood cancer organizations to provide critical information and services to blood cancer patients across the nation that will be sorely lacking if this funding is not maintained. LLS will be working to ensure that this program is retained in Congress' final budget and will call upon advocates to voice their support for this funding when they are needed.

This is a critical moment for cancer advocates! If cancer programs continue to be subject to funding cuts, the quest for a cure becomes much more of a challenge. We must protect the programs that benefit patients in need! Please visit LLS's Legislative Action Center and tell your representatives that cancer patients NEED
their support . Urge them to retain funding for the Geraldine Ferraro Blood Cancer Education Program now! (copy and paste this link)
http://tiny.cc/y49ib

Blood Cancers Included in The Cancer Genome Atlas Research Program

The Leukemia and Lymphoma reports: "Federal research officials recently announced that The Cancer Genome Atlas (TCGA), a research program dedicated to a comprehensive effort to explore all of the genomic changes that lead to human cancers, will expand from three cancers under investigation to 20 or more cancers. Due in part to the efforts of The Leukemia & Lymphoma Society (LLS), as well as other organizations, many of the cancers being added to the list in the program are the so-called "deadly cancers." Among the blood cancers, acute myeloid leukemia, chronic lymphocytic leukemia, diffuse large B-cell lymphoma, multiple myeloma and non-Hodgkin lymphoma are included in the expanded program."
http://cancergenome.nih.gov/

Omnibus Appropriations Bill

According to the LLS, here is the information on the Fiscal Year 2010:

$31 billion for the National Institutes of Health (NIH), a $691 million, or 2.3 percent, increase over the agency's FY09 budget. Included in this amount is a 2.8 percent increase for the National Cancer Institute (NCI), bringing its FY10 budget to $5.1 billion, and $212 million for the National Center on Minority Health and Health Disparities, a 2.7 percent increase over FY09.

The Centers for Disease Control and Prevention (CDC) also received a $30.04 million increase over FY09 in the omnibus bill, bringing the CDC's overall FY10 budget to $370.34 million. The CDC provides funding for several programs that are important to The Leukemia & Lymphoma Society (LLS) and blood cancer patients, including $4.67 million for the Geraldine Ferraro Blood Cancer Education Program; $20.69 million for Comprehensive Cancer Control; $5 million for a Patient Navigator Program; and $1.01 for the Cancer Survivorship Center, a new program.

Cancer advocates will be pushing for an increase of 13.5 percent for both NIH and NCI in FY11, increasing the institutes' budgets to $35.2 billion and $5.795 billion, respectively. Included in those budgets requests are $30 million to fund the Caroline Pryce Walker Conquer Childhood Cancer Act and $6 million for the Centers for Disease Control and Prevention's (CDC) Geraldine Ferraro Blood Cancer Program.

Facts & Statistics

The Leukemia and Lymphoma Society offers a web page on Facts & Statistics; click link below for more information:
http://www.leukemia-lymphoma.org/all_page?item_id=12486

Temporary Spending Bill Passed by House

The U.S. House of Representatives recently passed a continuing resolution that will fund the federal government, including the National Institutes of Health (NIH), at fiscal year 2009 numbers through December 18, 2009. Stay tuned for more info.
Fast Fact from the Leukemia and Lymphoms Society: 'With more than 12 million Americans living with cancer -- including 912,938 people currently battling leukemia, lymphoma and myeloma -- and many survival rates improving, patients increasingly need a roadmap to help them, and their providers, develop a care plan that spans the entire course of their treatment, including survivorship. Cancer care begins with diagnosis and continues past remission, and care plans need to constantly evolve with each stage of treatment.'
Please support all Comprehensive Cancer Care legislation introduced in Senate.

Ruth Kirschstein Dies

The Scientist Daily online journal reports: 'The trusted advisor at NIH was the first woman to head an NIH institute, twice served as acting NIH director, and made lasting contributions to public health'.
You can follow this link to read a letter from Dr. Francis Collins (current director of the NIH):
http://tideliar.blogspot.com/2009/10/dr-ruth-kirschstein-has-died.html

Obama announces $5 billion in research grants

CNN reports: "President Obama, in an effort to stimulate the economy and support critical research, announced $5 billion in grants during a visit to the National Institutes of Health on Wednesday."...
"Cancer has touched the lives of all Americans, including my own family's," the president said. "We all know the terrible toll on families and the promise of treatments that will allow a mother to be there for her children as they grow up, that will make it possible for a child to reach adulthood, that will allow countless people to survive a disease that's claimed far too many lives."

Fundraising event: The Leukemia & Lymphoma Society's Light The Night Walk.

Fundraising announcement (this is a wonderful charity): I am raising funds for the Leukemia & Lymphoma Society's Light The Night Walk. I'm asking you to help by making a contribution! Please use the link (below) to donate online quickly & securely. You will receive an email confirmation of your donation as soon as it is made. I thank you in advance for your support which will make a difference in the lives of thousands of patients battling blood cancers.

http://pages.lightthenight.org/mn/TwinCiti09/taylorn

Ask Your Representative to Co-Sponsor Pediatric Cancer Survivorship Legislation

News from the LLS: "Improvements in long-term survival rates for pediatric cancer patients present some new challenges for patients, family members, providers and policy makers. Patients may face greater risk of secondary cancers; they may have limited access to follow-up care; the follow-up care they do receive may be inadequate; and some may face cognitive or psychosocial problems. Expensive long-term treatments, hurdles to purchasing health, life, or disability insurance, and employment barriers also pose difficulties for cancer survivors."
Here is the link to tell your representative to support legislation that benefits pediatric cancer survivors:
http://t.democracydirect.com/?ti_dn__=4ee7d911-206b-4470-944f-0f5c496df69c&__u_idz=20090225_054386&__turl=http%3a%2f%2fwww.capitolconnect.com%2flls%2falertdetail.aspx%3fAlertID%3d33

It's unanimous for Dr. Francis Collins!

"WASHINGTON, DC - HHS Secretary Kathleen Sebelius announced that the United States Senate unanimously confirmed Dr. Francis Collins as the next Director of the National Institutes of Health."
Excellent Choice!

NATIONAL INSTITUTES OF HEALTH (NIH) RECENT NEWS

NIH update: The US Senate ok's $442 million boost for NIH -- just half of what the House approved last week.
Other news from the NIH: The Obama Administration has nominated Francis Collins to head the NIH (National Institutes of Health)! Excellent choice.

Ask your Senators to Support Increased Cancer Research Funding

Advocating for increases of 10 percent, or $3 billion, for the National Institutes of Health (NIH) and $1 billion, or 20 percent, for the National Cancer Institute (NCI) over last year's budgets. These requests would increase NIH's overall FY 2010 budget to $33.3 billion and NCI's to $6 billion. Use this link if you would like to ask your Senators to Support Increased Cancer Research Funding: http://www.capitolconnect.com/lls/alertdetail.aspx?AlertID=32

YOUTUBE

You can view the award ceremony of Dr. Greipp on my youtube station: www.youtube.com/NT5472

Congratulations

Congratulations to Dr. Philip Greipp. He was my nominee for the Leukemia and Lymphoma Society's (MN Chapter) 'Relentless for a Cure Award'. Dr. Philip Greipp has been selected as this year's honoree! Dr. Greipp will receive his award at the Grand Finale Gala for the Man & Woman of the Year campaign on June 12.

National Cancer Institute's Plan to Accelerate Cancer Research Announced

'At the American Association for Cancer Research 100th Annual Meeting 2009 in Denver, National Cancer Institute (NCI) Director John E. Niederhuber, M.D., announced major details, such as funding more grants, development of a platform for personalized cancer care, and an accelerated cancer genetics program, that will move cancer research forward in this new economic environment. NCI is part of the National Institutes of Health (NIH).' (info in the NCI bulletin, click link for more info: http://www.cancer.gov/newscenter/pressreleases/AccelerateResearch

Tina Fey is the 2009 Light The Night Walk National Spokesperson

Actress Tina Fey is the The Leukemia & Lymphoma Society's 2009 Spokesperson. She will help raise awareness for one of its key campaigns, Light The Night Walk. Tina Fey was selected by Barbara Walters as one of America's "10 most fascinating people of 2008."

Economic Stimulus Package Increases Research Funding

On Tuesday, Feb. 17, President Barack Obama signed the American Recovery and Reinvestment Act of 2009 (HR 1) into law. Among many other provisions in the bill that the president and U.S. Congress hope will stimulate the U.S. economy, an amendment was added in the final days of deliberation that increases the amount of funding provided to the National Institutes of Health (NIH) by $6.5 billion.
The amendment was introduced by Sens. Richard Durbin (D-IL), Tom Harkin (D-IA) and Arlen Specter (R-PA). The final agreement provides the NIH with $10 billion in the stimulus package, with some $677 million of that designated for the National Cancer Institute (NCI).
The economic stimulus package is an ideal vehicle for increased NIH and NCI funding, as studies show that investments in biomedical research help to boost local economies. A recent study by Families USA found that for each $1 million that NIH invested, states generated an average of $2.21 million in new business activity. Also, improved therapies could improve worker productivity.
Above information from the Leukemia and Lymphoma Society

(I am bumping this post up due to updated links): A SPECIAL THANK YOU TO THE OPRAH WINFREY SHOW AND SIMON COWELL

Thank you to Oprah Winfrey, and Simon Cowell in your kindness shown to Madelaine. Please pray for Madelaine as she goes through cancer treatment.
Here is a link to her story: http://www.caringbridge.org/visit/madelainestoen
And a webpage about the Big Give: http://news.bbc.co.uk/newsbeat/hi/entertainment/newsid_7304000/7304253.stm

55th annual Eagles Cancer Telethon

This photo and note was in the Rochester Post Bulletin: "Dance instructor Jane Taylor, center, of the Jane Taylor Academy of Dance, is pictured with her daughter Natalie Taylor, left, and dancer Hailee Hart backstage at Eagles Cancer Telethon. Dancers from the academy performed a number of acts at the telethon".

Here is a form letter from the LLS, you can contact your Rep. to ask for support on this issue.

Following on the heals of the recently passed Caroline Pryce Walker Conquer Childhood Cancer Act, Rep. Joe Sestak has announced the formation of a bipartisan Pediatric Cancer Caucus, which he will chair, to provide a voice for children in this country who are suffering from cancer.

As you know, the Conquer Childhood Cancer Act will provide $30 million, annually, over a period of five years to develop grants for research fellowships in pediatric cancer, to fund a population-based national childhood cancer database and to award grants to childhood cancer organizations to raise public awareness, ensuring access to the best available therapies for pediatric cancers.

Congressman Sestak noted that “this Caucus will protect the interest of the often voiceless victims of cancer who for so long have benefitted from the leadership of Rep. Deborah Pryce (R-OH) and will be missed when she retires later this year.” As a constituent who recognizes your commitment to cancer causes, I urge you to join the Pediatric Cancer Caucus to continue your championing of children’s cancer issues in Congress.Thank you for your support.

Information about (ICGC)

In 2008, research organizations from around the world announced they were launching the International Cancer Genome Consortium (ICGC), a collaboration designed to generate high-quality genomic data on up to 50 types of cancer through efforts projected to take up to a decade. Here is a link for more info:
http://www.icgc.org/

LIGHT THE NIGHT UPDATE

The Leukemia and Lymphoma Society's annual fundraiser, 'Light The Night', raised more than $35 million this year in the fight against blood cancers!

2008 LIGHT THE NIGHT

Here is our family photo at the Leukemia and Lymphoma Society's annual fundraiser for 2008, we are the 'In Memory Of William Wanous' team.

LIGHT THE NIGHT

We will be participating in the Leukemia and Lymphoma Society's annual fundraiser 'Light The Night' on Saturday, Oct. 4th in St. Paul at Lake Phalen, this is our 7th year. I will post some pictures from the event soon. This photo is our team picture from last year, our team is titled 'In Memory Of William Wanous'.

President Bush Signs Conquer Childhood Cancer Bill

"U.S. President George W. Bush signs H.R. 1553, the Conquer Childhood Cancer Act of 2008, in the Oval Office of the White House in Washington, DC, July 29, 2008. REUTERS/Jason Reed (UNITED STATES)On July 16, the Senate unanimously passed The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (H.R. 1553). The bill had also passed the House unanimously on June 12. The bill significantly increases the federal investment in childhood cancer research, a LLS priority.
The bill would authorize $150 million over five years to develop grants for research fellowships in pediatric cancer, to fund a population-based national childhood cancer database and to award grants to childhood cancer organizations to raise public awareness, ensuring access to the best available therapies for pediatric cancers.
“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Sen. Jack Reed (D-RI). “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”
The bill had been introduced in the House by Rep. Deborah Pryce (R-OH) and in the Senate by Sens. Reed and Norm Coleman (R-MN). During the bill's mark-up in the House, it was renamed after the Ohio representative's daughter, Caroline, who lost her battle with neuroblastoma at age 9.
President Bush held a bill signing ceremony on July 29 with Rep. Chris Van Hollen (D-MD), Pryce, Reed and Coleman as well as several families and children with pediatric cancer from Ohio, Rhode Island and Texas. With the president’s signing of H.R. 1553, the Conquer Childhood Cancer Act is now law."

Article from the LLS

NCI Bulletin has a featured clinical trial 'New Drugs for Multiple Myeloma Consolidation Therapy'

The NCI Bulletin has a featured clinical trial. The name of the trial is Phase III Randomized Study of Consolidation Therapy Comprising Bortezomib and Dexamethasone with Versus without Lenalidomide in Patients with Symptomatic Multiple Myeloma Who Have Completed a Dexamethasone-Based Induction Regimen. Principal Investigator: Dr. Rafael Fonseca and Dr. S. Vincent Rajkumar, Eastern Cooperative Oncology Group. Here is a link to the article:
http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_070808/page8

INFO ON A CURRENT STUDY

Dr. John A. Lust has a study for myeloma patients with relapsed or refractory (resistant) Multiple Myeloma , here is a link for more info:
http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100616&title=%20CNTO%20328,%20A%20Phase%202%20Multicenter%20Study%20of%20CNTO%20328%20(Anti%20IL-6%20Monoclonal%20Antibody)%20in%20Patients%20with%20Relapsed%20or%20Refractory%20(resistant)%20Multiple%20Myeloma

ABC, CBS, NBC announce historic collaboration to 'Stand up to Cancer'

Celebrities from film, television, sports, journalism and music come together for Sept. 5 television event to raise funds for cancer research. For more information, check out their website: http://www.standup2cancer.org/
I have a star on their website in my grandfather's honor, you can view it by typing in his name, William Wanous.

Senator Kennedy, you are in my thoughts and prayers

A SPECIAL THANK YOU TO THE OPRAH WINFREY SHOW AND SIMON COWELL

Thank you to Oprah Winfrey, and Simon Cowell in your kindness shown to Madelaine. Please pray for Madelaine as she goes through cancer treatment.


Here is a link to her story:

http://www.caringbridge.org/visit/madelainestoen

And a webpage about the Big Give:
http://news.bbc.co.uk/newsbeat/hi/entertainment/newsid_7304000/7304253.stm

A CONVERSATION WITH DR. BRUCE BLOOM, PRESIDENT AND CHIEF SCIENCE OFFICER OF PARTNERSHIP FOR CURES

**It is now my great pleasure to introduce you to Dr. Bruce Bloom, President and Chief Science Officer of the Partnership for Cures.

**Dr. Bloom, welcome. First, I will ask a question that I have asked others on my blog, do you believe it is possible that cancer could be eradicated by 2015 like the NCI hopes?

Natalie, under the current cancer research and treatment paradigm I don't think we will eradicate cancer by 2015. First, we're still researching cancer cures as if cancer is a distinct and well defined disease, like a bacterial infection, even though we have overwhelming evidence that there are huge variations in cancer cells between patients with the same diagnosis, within a single patient, and even within an individual tumor. Thousands of researchers are trying to develop ways to block one specific cancer pathway or jumpstart one supportive pathway even though we know that cancer cells almost always develop alternative ways to avoid these single pathway treatments, or even combinations of these single pathway treatments. Most of these pathways are also critical in the function of normal cells, so that blocking them or revving them up has significant side effects. We need to find a better way.

Second, we still use the "maximum tolerated dose" theory of treatment. We give as much drug as we believe the body can tolerate in order to try to overwhelm cancer. The toxic effect of this massive dosing often causes patients lose their fight against cancer. This massive drug dosing destroys the very immune system that is set up to help us fight disease, and this chemotherapy also damages other body systems that are necessary for healing. And even when these massive doses of destructive drugs don't kill the patient directly, most patients still lose the fight against cancer. We need to find a better way.

Third, we still treat cancer patients without considering their total care. We give massive drug doses at a time during the day when it is convenient for the physician or hospital staff, not in a dosing schedule or at a time when it would be most convenient or beneficial for the patient. During the weeks between treatment we leave the patient to fend for himself or herself, requiring them to recognize side effects and determine when things are serious enough to call for help. We often ignore the fact that nutrition, mental health, exercise, and other factors play a huge role in a patient's recovery from disease, especially from cancer. We need to find a better way.

Fourth, most researchers function independent of other researchers and cannot disclose their results until all of the intellectual property and publication protections are in place, so the time it takes for us to share information is significantly delayed, This silo research also causes us to often repeat the same research over and over in different labs, wasting time and valuable resources. We do a lot of curiosity research instead of cure research. We've set up a reward system based on IP and publication success, and we encourage researchers to undertake research that has a long tail so that they can secure funding for long periods of time to support their labs. We don't routinely provide any true incentives to researchers to push better treatments to patients unless they or their institutions or some pharmaceutical company can make a large profit from it. We spend lots of money on things that cannot get us to a cure, and we spend it in multiple places doing the very same thing. We need to find a better way.

There are a number of things we could do by 2015 to improve our chances of conquering cancer. We can put a premium on prevention. Reducing the incidence of cancer or delaying the onset of cancer will affect the morbidity and mortality rates of cancer much more profoundly than any cure we are likely to create in the next 7 years. But these kinds of epidemiological studies don't make a lot of money for anyone, so there is little economic incentive to support this research. We need to government to support much more of this kind of research.

We can continue to focus on early diagnosis. The sooner we know a patient has cancer the better the chances of controlling or curing it. Lots of current research is focused on earlier diagnosis, and we could do more, especially in the way we collaborate to speed this information to market and to patients, and to reduce the amount we spend on redundant research.

In the end I don't think we'll find the "silver bullets" the current research paradigm is looking for. Instead of finding a cure for cancer, it is more likely that we will find a way to turn cancer from an acute, life threatening disease into a chronic, manageable disease. Instead of blasting cancer patients with the maximum tolerated (or often NOT tolerated) dose of drugs, we will give them minimum doses of a large number of drugs, each of which will thwart enough cancer cells to allow the body, over a long period time, maybe many years, to either keep the disease in control or actually remove all traces of the disease from the body. The lower doses of these drugs, combined with nutrition, sleep, exercise, mental health and other supportive care, should create fewer side effects so that patients can live a high quality extended life on these regimens.

I believe we probably already have discovered all the drugs and other therapies we need to create this multiple drug, low dose, holistic cancer control regimen, but we don't have a regulatory, research or reward systems to support finding it or testing it for use with patients. There is no economic incentive to get this done. This kind of multi-drug regimen is not likely to be embraced by a single pharmaceutical company, and it is not likely that a consortium of companies will get together to support it. It will be hard for physicians to embrace this regimen unless there is strong scientific research to back it up. The cost of supporting this massive research undertaking is beyond the support of most individual foundations. The combined efforts of the government, industry, academia and philanthropy could undertake this endeavor, but the economics, politics and bureaucracy are likely to keep this from happening.

**Please tell me a little about yourself and your work.

I am currently the President and Chief Science Officer for Partnership for Cures, a public charity that drive better treatments and cures to patients in 2 years or less, primarily by repurposing existing drugs and other therapies for new uses in new diseases. We believe this is a fast, safe and inexpensive method of helping patients with disease right now. When we repurpose existing drugs, like Rapamycin for the children's disease ALPS (Autoimmune Lymphoproliferative Syndrome), we can often drive an effective, safe and inexpensive medical solution to patients in a very short period of time at a very low cost. This research, undertaken at Children's Hospital of Philadelphia, took less than two years and cost under $100,000! These ALPS children now have an inexpensive treatment for their disease that looks like it might extend life significantly and with good quality.

I've been doing this work for the last 6 years. I first became involved with clinical research in the early 1980's when I was a Director of Clinical Research for the National Patent Development Corporation, the company that brought the soft contact lens technology to the US. Later I supervised clinical research for Bausch and Lomb and for a number of start-up biotechs.

I am also the host of The Clinician's Roundtable on ReachMD, XM 157 on XM satellite radio, the channel for medical professionals, and also at www.reachmd.com. I interview scientists about their research, and also focus on the business of healthcare, the history of healthcare, healthcare public policy, and healthcare non-profits. I welcome inquiries from experts interested in being interviewed so that the audience can learn from them.

**I understand you attended 5th State Of The Art Symposium On Hematologic Malignancies. Will you share with us some of the information from the event?

Goldman Philanthropic Partnerships, the foundation that spun off Partnership for Cures, worked with Dr. Phil Greipp and the Mayo Clinic to sponsor the 1st State Of The Art Symposium On Hematologic Malignancies, which at the time was focused only on multiple myeloma. We're delighted with the progress that this program has made over the years, creating a forum for education of clinicians and the dissemination of cutting edge research information.

**In your opinion, what should the research priorities be over the next 5 years?

Changing the research reward systems so that researchers can focus on driving treatments and cures to patients instead of driving intellectual property to patent lawyers and papers to publishers. Until we reorganize and reorient the focus will not be on the patient. We've been working on finding cures for forty plus years under this current system and we're not delivering. There are some examples of how this can get done. The Multiple Myeloma Research Consortium is a good example of how to give researchers incentives to work together to share information and resources, and how to manage IP and publications so that they don't interfere with the focus on patients. Other countries are finding ways to get around these obstacles. Singapore has created a research hub that has motivated some of our best researchers to leave the US.

**In your opinion, what has been the biggest breakthrough in cancer research in the last five years?

Our ability to differentiate one cancer cell from another in what we used to diagnose as a single disease. The human haplotype project and all of the work being done around the world to continue to help us see cancer as a multi-dimensional disease and constantly changing disease that needs a multi-dimensional solution.

**Thank you very much for your time Dr. Bloom.
For more information on Dr. Bruce Bloom, click link below:
http://www.4cures.org/

Click link below for more info on 5th State of the Art Symposium on Hematologic Malignancies (will be held in Phoenix, AZ on Jan. 17-20. 2008)

http://www.mayo.edu/cme/hematologicmalignancies/

A CONVERSATION WITH DR. RAFAEL FONSECA OF THE MAYO CLINIC

**It is now my great pleasure to introduce you to Dr. Rafael Fonseca from the Mayo Clinic in Scottsdale, AZ . He is a Consultant, Professor of Medicine and Site Director for Hematological Malignancies. His research focuses on myeloma and related conditions including MGUS, amyloidosis and Waldenström macroglobulinemia. I will ask him similar questions as I did with Dr. Greipp, to learn the different points of view.Dr. Fonseca, welcome. Please tell me a little about yourself and your research.

I am a hematologist and oncologist who spend quite a bit of my time in the research lab. My goal is to help develop better diagnosis and treatment tools for patients with the aforementioned conditions. In particular I like to think that by understanding the disease biology better, particularly the genetics, we will have even better ways to ultimately be able to cure myeloma.

**How did you become interested in hematologic malignancies and myeloma and Waldenstrom’s Macroglobulinemia specifically?

Mostly be learning from the pros! Phil Greipp, Morie Gertz and Bob Kyle were great mentors who helped me see the value of research and the possibilities that exist to make treatments better. It just happened that they worked in the area of hematology malignancies.

**Could you give a brief definition of myeloma and Waldenstrom’s Macroglobulinemia?

Myeloma and Waldenström macroglobulinemia are similar disorders that arise as cancer transformation of good cells. In both cases the cells that normally would help us be protected from infection by producing antibodies go wrong. In the case of Waldenström macroglobulinemia it is the cells that normally would produce the IgM antibodies while for MM it is the cells that produce the IgG and IgA antibodies. While they are quite similar their biology is totally different.In Waldenström macroglobulinemia patients have elevations of the IgM (sometimes leading to viscous blood, the so called hyperviscosity syndrome), anemia and sometimes enlarged liver and or spleen. In the case of myeloma the cells that are increased in the bone marrow are called plasma cells. The major complications include anemia, kidney failure, bone destruction and in some cases elevations of the blood levels of calcium. In both cases one has ot first define whether patient needs treatments because we frequently see a variant called smoldering MM or smoldering WM, in which patients can go on for decades without needing therapy.

**Do you believe it is possible that cancer could be eradicated by 2015 like the NCI hopes?

I do not think that cancer can ever be eradicated or that cancer will ever be 100% curable. However I am sure that by 2015 we will continue to have so many more tools that the prospects of surviving cancer and being cured from cancer will continue ot get better. The treatments of today are far better than those of 10 years ago and or some disease the prospects of cure are within our reach (e.g. CML, CLL, follicular lymphoma and MM). I hope the same progress can occur for the solid tumors that still lag behind in treatment availability.

**I understand you attended XIth International Myeloma Workshop in Kos, Greece. What were the latest advancements?

Mostly advances in the treatment, particularly the updated results in clinical trails of lenalidomide and bortezomib.

**This was very informational, thank you very much for your time Dr. Fonseca.

For more information on Dr. Rafael Fonseca, click link below:
http://mayoresearch.mayo.edu/mayo/research/staff/fonseca_r.cfm

COMING SOON! An interview with Dr. Rafael Fonseca

I have something interesting to share with you. I will be having a post titled: 'A conversation with the Mayo Clinic Consultant, Professor of Medicine, Site Director for Hematological Malignancies (in Scottsdale, AZ), who is Dr. Rafael Fonseca. I will be asking him similar questions that I did with Dr. Philip Greipp. What the latest advancements in treating hematologic malignancies are and hear what the future holds for treatment. Does he have confidence we will conquer the disease by 2015? What exciting issues are being discussed in Greece at the XIth International Myeloma Workshop in Kos, Greece. Stay tuned.....

(Dr. Fonseca is pictured here with Dr. Greipp at the Parthenon in Greece).

I was honored to be a part of this amazing group in D.C.:

Society Advocates Fight for Cancer Research Funding
(printed in e-Newsline of the LLS: May 20, 2007):

At this year’s Mission Day, held March 19-20, in Washington, DC, some 300 Society advocates gathered on Capitol Hill to urge their representatives to address the needs of blood cancer patients and their families.

The top issue was the lack of funding to sustain the war on cancer. Funding from the National Institutes of Health (NIH) and the National Cancer Institute (NCI) support the majority of cancer research conducted at academic and community cancer centers around the country. Congress doubled the budget for those institutions from 1999 to 2003. Since that time, however, Congress failed time and again to provide sufficient funding to keep pace with inflation, let alone expand on medical research breakthroughs.

Accounting for inflation in medical research costs, the NIH budget for fiscal year 2005 was actually $1.75 billion or 6.2 percent lower than when the doubling was completed in 2003. In fiscal 2006, that trend intensified with an actual cut of $33 million to the NIH budget, for a total of $28 billion. In that same year, NCI received a deep cut in funding for a total of $4.8 billion. The administration’s 2006 budget proposal included an additional reduction for NCI of $40 million – a $186 million decrease relative to the amount needed to maintain current spending adjusted for inflation.

For his fiscal year 2007 proposal, President Bush called for a freeze on NIH spending at 2006 funding levels. After the election, the new Congress was finally able to come to an agreement on 2007 spending in January of this year – essentially funding the NCI at 2006 levels.

These budget cuts are now threatening the future of cancer research that might save more lives. Consider some specifics:


The NCI is facing a 10-percent budget cut for the cancer cooperative groups that coordinate and conduct clinical trials into new therapies. One of the groups, the Children’s Oncology Group, will cut clinical trials by 400 patients.
These cuts would eliminate 95 new clinical trials and reduce patient enrollment by 3,000.
Even in 2002, when the research budget was growing, the government approved only one-in-five promising proposals for new research. Now only one-in-10 is funded.
Individual labs are experiencing cuts of as much as 30 percent. Scientific leaders fear we are in jeopardy of losing a whole generation of scientists.

There is time to reverse these trends, however. In their meetings with legislators, Society advocates urged Congress to increase NIH and NCI funding by 6.7 percent for each of the next three years. That would restore funding to 2003 inflation-adjusted levels and continue the pace of research and discovery.

In this year, more than ever, Society advocates, scientists, clinicians, nurses, patients and families need to be loud
and insistent that cancer funding be restored as a top national priority.

To help the Society advocate for cures, please visit the “Advocacy” section at www.LLS.org . The site offers extensive resources to help with contacting legislators, crafting messages and keeping people up to date about issues that concern blood cancer patients and their families. The Society also publishes numerous free, online eNewsletters. To subscribe, visit the “Free eNewsletters” section on the bottom right of the
www.LLS.org homepage.

A CONVERSATION WITH DR. PHILIP GREIPP OF THE MAYO CLINIC.
It is now my great pleasure to introduce you to Dr. Philip Greipp from the Mayo Clinic in Rochester, MN. He is the Director of the Cancer Center Hematologic Malignancies Program. His research focuses on the biology of multiple myeloma and related monoclonal gammopathies.
**********************************************************
Dr. Greipp, welcome. Please tell me a little about yourself and your research.
Well, first I am a physician taking care of patients with plasma cell disorders at the Mayo Clinic. Currently I serve as Director of the Hematologic Malignancies Program at Mayo Clinic and my primary research is in the area of multiple myeloma a cancer of marrow plasma cells. We believe that the primary reason patients with myeloma die of their disease is because the marrow plasma cells undergo a critical growth change and we have devised a method to measure their growth called the plasma cell labeling index. We are interested in how treatments may interfere with this growth change and therefore prolong patients’ lives.

****

How did you become interested in hematologic malignancies and myeloma specifically?

It is the patients. Early on in my training I observed the courage of patients with hematologic malignancies and became interested in how I might help them not only by providing good patient care but by working on their problems in the laboratory. It is difficult for one person to work across all Hematologic Malignancies. My concept was to form Disease Oriented Groups to do this at Mayo. Specific doctors would work with colleagues interested primarily in the patients specific disease, whether it be multiple myeloma, lymphoma, chronic lymphocytic leukemia or a myeloid disorder while I worked primarily in the area of myeloma sharing information to and from the other disease groups with our own disease group.

****
Can you share with me the latest advancements in treating multiple myeloma?
There have been critical advances in diagnosis, prognosis and treatment of multiple myeloma for example we now know that myeloma is not just one disease and it can be accurately classified by cytogenetics. We also know that certain cytogenetic and molecular types of myeloma do not respond well to standard treatments and they deserve new treatment approaches.

****

Do you believe it is possible that cancer could be eradicated by 2015 like the NCI hopes?
I am hoping that one by one certain cancers will be eradicated even sooner than 2015 and that eventually all cancers will follow that path.

****

Dr. Greipp, I was very impressed when I attended one of your Hematologic Symposiums you directed in the past. Where do you plan on holding your '5th State Of The Art Symposium on Hematologic Malignancies'?

The 5th Hematologic Malignancies Meeting has been scheduled for Scottsdale, Arizona in January of 2008. We hope many people come to learn the latest progress against these diseases.

****

Thank you very much for your time Dr. Greipp.

Thank you Natalie.

****

For more information on Dr. Greipp you can click here:

http://mayoresearch.mayo.edu/mayo/research/staff/greipp_pr.cfm
And for more information on the NCI's goal of 2015, click here:
http://www.ncbi.nlm.nih.gov/pubmed/12610266

A conversation with the Director of the Hematologic Malignancies Program at the Mayo Clinic

I have something exciting to share with you. I will be having a post titled: 'A conversation with the Director of the Hematologic Malignancies Program at the Mayo Clinic'. I will be asking him what the latest advancements in treating hematologic malignancies are and hear what the future holds for treatment. Does he have confidence we will conquer the disease by 2015? Where will he have his 5th State Of The Art Symposium On Hematologic Malignancies? Stay tuned.....

Update on the The Minnesota Partnership for Biotechnology and Medical Genomics

2007 UPDATE:
Gov. Tim Pawlenty has proposed $38 million in new spending on biogenomics medical research being conducted through the partnership of Mayo Clinic and the University of Minnesota. The proposed funding, announced as part of the governor's budget released in January of 2007, is the largest installment sought by the GOP governor for pioneering medical research. Previous requests have been $2 million, $15 million and $15 million. The 38 million included in his budget proposal to the Minnesota Legislature suggests the state complete its commitment to the partnership to fully fund it to $70 million.

National Cancer Institute (NCI) is celebrating 70 years of excellence!

On August 5, 1937, President Franklin D. Roosevelt signed legislation that established NCI to support research related to the diagnosis, causes, and treatment of cancer. Read more about it on this link:
http://www.cancer.gov/aboutnci/ncia

Here is the latest email from Senator Norm Coleman concerning health issues:

"As you may know, I proudly supported an amendment by Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) to add $7 billion in funding for health and education in the fiscal year 2007 budget. This amendment would provide funding equal to fiscal year 2005 levels for over 300 programs. The National Institutes of Health, Center for Disease Control, and other worthy programs would benefit by this increased funding. The amendment passed with bi-partisan support by a vote of 73-27 on March 16, 2006.

Unfortunately, only $5 billion of this increase was incorporated in the Labor, Health and Human Services, and Education (Labor-HHS) Appropriations bill. While I am encouraged by this progress, I nevertheless would like to see additional funding for these programs.

You will be pleased to know that I recently joined Senator Specter and Senator Harkin in urging Senate leadership to restore the additional $2 billion. We simply cannot short-fund health programs that provide essential research and services to prevent devastating diseases. Neither can we sacrifice education programs that invest in our nation's most vital resource, our children.
Please know that I will continue to work to ensure that health and education programs receive adequate funding. "

Sincerely,
Norm Coleman
United States Senate

I am beginning to gather information to put on this blog.

This blog will be a great way for me to connect with others in the world who share an interest of securing as much funding as possible for health issues. I applaud all the researchers who work very hard to find better ways to treat illness. My friend Phil is holding the '4th State of the Art Symposium on Hematologic Malignancies in Wellington, New Zealand on January 14-18, 2007'. It will be a super event full of new information. Here's the link: http://www.mayo.edu/cme/hematologicmalignancies/