Beating Myeloma Blog
In this week's Moss Reports, Ralph Moss discusses a study about hyperthermia in the January 2010 the Journal of the National Cancer Institute (JNCI).
The newsletters, part I and part II are linked below.
Ralph writes about several important issues with Random Controlled Trials (RTC) and hyperthermia. There are challenges when it comes to heating a single tumor within one's body. Clearly this is a therapy that has the potential to be "oncology's fourth modality" and I recommend reading both articles- especially part II.
However, the single most important issue for myeloma survivors and caregivers is one of the last paragraphs in part II.
""The American immunologist, Elizabeth Repasky, PhD, went even further, raising the possibility of using hot baths saunas to raise temperatures in conjunction with standard therapies. (One origin of hyperthermia was the once-popular "Schlenz bath" of the 1930s and 1940s.
Repasky has evidence from animal studies that mild heat improves natural immunity to cancer as well as immune function. Perhaps, she told JNCI, fever-range heat or a hot tub may provide some benefit to cancer patients about to receive chemotherapy or radiation."
Through sauna, I raise my internal body tempature to "fever range heat" or approximately 102 F. I think this weekly whole body hyperthermia may well help me stay in complete remission.
David Emerson
The article written by reporter Diane Solov for the Plain Dealer in 1993 documents my struggle with myeloma from my original diagnosis in 3/94 through extensive conventional therapy, three relapses, the non-conventional therapy called antineoplaston therapy from 11/97-4/99 to complete remission.
The beating-myeloma.org website is devoted to all issues that help myeloma survivors and caregivers manage their myeloma to live better, longer lives. Since antineoplaston therapy is only one part of my experience and too expensie for most mmers, I don't spend much time on this site talking about it.
But the website linked below offers movie trailers and some important content about Dr. Burzinski and antineoplaston therapy. If you have any interest in learning more about this therapy, please click the link below.
David Emerson
I've written before about the financial pressures that a myeloma diagnosis brings. However, the first article below compares novel therapy costs and the second article gives specific links to organizations that give financial assistance to cancer patients.
As the article linked below cites average annual costs for the three novel therapies- thalidomide, velcade and revlimid. Always consult with your insurance company to make sure that any therapy, bone marrow transplant, novel therapy, whatever, is covered. The myeloma world is filled with "experiemental" therapies.
Study Compares Out-Of-Pocket Expenses For Myeloma Patients Treated With Velcade, Revlimid, Or Thalidomide (ASH 2009)
Managing your myeloma means managing your financial health too-
Help With Medical Bills
1) The CancerCare Co-Payment Assistance Foundation (at 1-866-552-6729 or CancerCareCopay.org) helps eligible patients cover the cost of insurance co-payments for treatment of specific cancers...eligible for assistance: breast cancer, colorectal cancer, head and neck cancer, non-small cell lung cancer, pancreatic and renal cancer and glioblastoma.
2) HealthWell Foundation HealthWellFoundation.org, which helps with co-pays and premiums for patients with group and individual insurance, Medicare and Medicaid.
3) The Leukemia & Lymphoma Society's Co-Pay Assistance Program (leukemia-lymphoma.org) helps with private-insurance premiums.
4) The Patient Advocate Foundation Co-Pay Relief Program (copays.org) provides pharmaceutical co-pay help to insured patients, including Medicare Part D recipients.
David Emerson
Few non-conventional therapies have been as well studied as vitamin D supplementation. The challenge for the survivor/caregiver is to synthesize all of the studies to decide how to best utilize vitamin D for you. In an effort to do this, I have tried to highlight the key vitamin D properties for mmers below.
1) The study published yesterday on b-m.org summarizes improvements in muscle strength and balance based on specific doses of vitamin D supplementation-
"Objective To test the efficacy of supplemental vitamin D and active forms of vitamin D with or without calcium in preventing falls among older individuals."
What is already known on this topic
- Recent systematic reviews suggest a non-significant reduction in falls among individuals receiving supplemental vitamin D
- Vitamin D has a direct beneficial effect on muscle, and improved strength and balance in several trials in older persons
What this study adds
- A dose of 700-1000 IU supplemental vitamin D a day reduced falls by 19%, and by up to 26% with vitamin D3, within 2-5 months of treatment initiation
- Vitamin D may not reduce falls at doses of less than 700 IU a day
- Active forms of vitamin D do not appear to be more effective for fall prevention than 700-1000 IU of supplemental vitamin D
- 2) The second study published yesterday on b-m.org studied the effect of vitamin D supplementation on bone strength-
- http://beating-myeloma.org/article/side-effects/patient-level-pooled-analysis-of-68-500-patients-from-seven-major-vitamin-d-fra
- Objectives To identify participants’ characteristics that influence the anti-fracture efficacy of vitamin D or vitamin D plus calcium with respect to any fracture, hip fracture, and clinical vertebral fracture and to assess the influence of dosing regimens and co-administration of calcium.
- Conclusion This individual patient data analysis indicates that vitamin D given alone in doses of 10-20 µg is not effective in preventing fractures. By contrast, calcium and vitamin D given together reduce hip fractures and total fractures, and probably vertebral fractures, irrespective of age, sex, or previous fractures.
- Lastly, how does vitamin D supplementation help your immune strength?
- The quotation below is from the wikipedia discussion of vitamin D
Immunomodulation
The hormonally active form of vitamin D mediates immunological effects by binding to nuclear vitamin D receptors (VDR) which are present in most immune cell types including both innate and adaptive immune cells. The VDR is expressed constitutively in monocytes and in activated macrophages, dendritic cells, NK cells, T and B cells. In line with this observation, activation of the VDR has potent anti-proliferative, pro-differentiative, and immunomodulatory functions including both immune-enhancing and immunosuppressive effects.[60]
To summarize, vitamin D supplementation, in doses of 700-1000 mg per day increases muscle stength, increases bone strength when taken with calcium (be sure to monitor your calcium blood serum) and enhances your immune function.
David Emerson
The mission of the Galen Foundation, beating-cancer.org and soon to be launched PeopleBeatingCancer.org is to give cancer survivors the information to live better, longer lives.
The first philisophical hurdle for any newly diagnosed mmer is to decide whether he/she wants to go for a cure or to control the myeloma.
A critical issue with trying to cure one's myeloma is the issue of side effects. The article linked below discusses late and long term side effects both of allogenaic and autologus bone marrow transplants. Side effects are scarry, serious, life-threatening things. I live with nerve damage, irratible bladder, chemobrain and the possibility of a secondary cancer someday.
If you are considering a bone marrow transplant, don't rely on your onc to apprise you of possible side effect outcomes- do your homework undergo this therapy with your eyes wide open.
I blog all the time about various lifestyles that may help conventional therapies to work better and minimize possible side effects. Well what about therapies to possibly maximize the effectiveness of an autologus bone marrow transplant while minimizing side effects?
Beating Bone Marrow Cancer-Hematologists Boost Immune Response in Bone-Marrow Transplant Patients
"BALTIMORE--A heavy dose of chemo takes a huge toll on cancer patients' bodies, making them weak and prone to infection. Now, a new, life-saving therapy is helping some cancer patients win the war against a deadly disease."
This article cites conventional oncologies approach to improving bone marrow transplantation. Consider supplementation before, during and after chemotherapy.
Consider papain and enzymes during therapy.
David Emerson
The reason I posted this article yesterday is that Dr. Robert Kyle is the father of multiple myeloma. He has forgotten more about mm that I will ever learn. If you are serious about managing your mm, you need to read up on Dr. Kyle.
Thought Leader Perspective: Dr. Robert Kyle On Treating Multiple Myeloma
"Dr. Robert Kyle is a multiple myeloma key opinion leader, physician, researcher, and professor at the Mayo Clinic. Dr. Kyle has dedicated his life to caring for multiple myeloma patients and studying the disease."
What I consider to be most important about Dr. Kyle's work is his focus on MGUS and SMM. It is this focus that has lead me to consider MGUS, SMM, VGPR (very good partial remission ) and CR (complete remission) as almost different diseases than full blown myeloma. Their reduced degree of tumor burden makes treatment of these stages much different than actual multiple myeloma.
In other words, since I have achieved complete remission I have come to regard my mm differently than when I had active disease and i wonder if the catagories of MGUS, SMM, VGPR are to be treated similarly.
I achieved complete remission at the beginning of '99 and have stayed in CR without the help of any conventional therapies since then- approximately 11 years now. This is a long complete remission- especially without drugs of any kind. I have to ask myself then, how can this be?
Assuming that I was not cured by antineoplaston therapy (I'll blog about this idea some other time) I have got to believe that there are mm cells running around in my blood stream just like those with the diagnosis of MGUS, SMM and VGPR. The only difference between these different diagnoses is, to what degree or how much mm is circulating in my blood?
"Dr. Kyle advised, “If the patient has smoldering, asymptomatic multiple myeloma, then it’s in the patient’s best interest not to treat because at the end of five years of observation, half of those patients will still be smoldering.” He added, “There are adverse side effects to any drug that you take. There’s also the cost to consider. So you’re much better off if you don’t have to take anything.”
Mgus, smm, vgpr and cr are all stages of "asymptomatic multiple myeloma." Therefore I believe it is in the patient's best interest not to treat- conventionally.
As i stated above, I continue to stay in complete remission without conventional therapies. Therefore, I believe the unconventional therapies that I do take keep me in complete remission.
The non-conventional therapies that keep me in complete remission or asymptomatic are:
1) Supplementation- antioxidants with proven anti-cancer or anti-myeloma action are green tea extract, grape seed extract, curcumin, fish oil, vitamin D and resveritrol.
2) Whole body hyperthermia-
3) Supplementation with enzymes with papain-
4) Supplementation with milk thistle to heal my liver after extensive chemo-
David Emerson
The linked article below is important to all mmers considering conventional chemotherapy- novel or otherwise- no matter what your stage.
Papayas, Papain and Multiple Myeloma: A Potential Adjunct Therapy That Requires Further Evaluation
1) "Research shows that papain, a compound found in papaya fruit trees, may serve as a useful supplementary therapy in the treatment of multiple myeloma.
Papain is an enzyme that breaks down proteins. One such protein, called fibrin, makes up the protective layer of cancer cells. Papain degrades fibrin and damages this protective layer, making the cells more susceptible to immune response or chemotherapy. The compound also hinders tumor growth and prevents it from spreading to other parts of the body."
I have written extensively about complementary/integrative therapies that weaken mm cells- supplementation such as green tea extract, grape seed extract, vit D, curcumin, fish oil, and whole body hypertherapy all have anti-cancer properties.
The Myeloma Beacon, an e-newsletter that focuses primarily on conventional mm therapies, yesterday published this article documenting the anti-mm effects of papain, the main componant of many broad spectrum enzymes. Many people take enzymes with meals to help their digestion. Anyone here heard of beano?
2) "Scientists at the University of Brastislava’s Clinic of Hematology and Transfusion Medicine in the Slovak Republic determined that multiple myeloma patients undergoing chemotherapy achieved a greater remission response if they were supplemented with Wobe-Mugos E for more than six months, compared to patients who were not."
This study documented mm patients who supplemented with papain while undergoing chemotherapy "achieved a greater remission response. As I have published previously, greater remission response is associated with longer remissions and longer life.
I will blog tomorrow about enzymes use in preventing blood clots.
David Emerson
A myeloma diagnosis can be summed up in one simple phrase- fear of death. Multiple myeloma is considered an incurable form of cancer by conventional oncology. This means that conventional oncology believes that anyone with a mm diagnosis will eventually die of myeloma. Therefore, a myeloma diagnosis is more scarry than some other cancers.
When I was diagnosed in February of 1993, the mean life expectancy of a myeloma diagnosis was 3-5 years. Over the years, many patients and even oncs have wondered about longer mean life expectancies but the article linked below is the first time since my diagnosis that the FDA has allowed anyone to print longer average life expectancies on their label.
Survival data OK for cancer drug Velcade's label
So when my onc told me that "there is nothing more that we can do" I naturally believed that I would die in the coming months. My onc told me that in September of 1997.
I no longer believe that conventional oncology has all the answers. I believe that the individual myeloma survivor needs to take responsibility for his/her cancer.
I believe that Velcade is a step forward for myeloma survivors. However I believe that velcade in only a step. There is more to myeloma managment that what conventional oncology offers.
This article is misleading. If you are a cancer survivor or a caregiver you need to know this.
Facing End-of-Life Talks, Doctors Choose to Wait
1) "Guidelines for doctors say the discussion should begin when a patient has a year or less to live"
Who knows this?! Certainly not your onc in all cases. How many times have you heard stories about cancer patients who have beat the odds? Learn about complementary therapies, integrative therapies, supplementation, hypertherapy, nutrition, organic food. Don't wait until your conventional onc tells you that there is nothing more he/she can do.
2) "Instead, most of the doctors said they would rather wait until the patients felt worse or there were no more cancer treatments to offer."
The author means "no more conventional cancer treatments to offer." There is a world of cancer therapy available beside convention treatments.
3) "I think many of us wait until there’s just a few weeks left and then you have no choice,” he said. “It’s going to happen in a week or two, and they’re in the hospital and they’re on their last legs."
Your conventional onc is a resource but only one source of information.
4) "They might say: ‘After that last three or four months of radiation and chemotherapy, I’m sick, I’m nauseated, my hair fell out and it didn’t extend my life. I might not have done it if I’d known, if I had had the chance.’ ”
This quote speaks for itself. There is more to cancer treatment than conventional therapy.
I didn't believe my onc and I am alive today because I didn't. You are in charge of your cancer.
David Emerson
I cannot read an article like the one linked below without thinking about the many articles and studies that I have read that support supplementation of vitamins, minerals, antioxidants, DURING conventional chemotherapy like thalidomide and dexamethasone.
1) "In the process of treating multiple myeloma, patients often experience a weakening in their immune system which makes them more susceptible to infection. Serious infections can lower a patient’s quality of life, require doctors to reduce treatment to a less toxic but less effective level, and even cause death."
2) "Patients who experienced severe infection were more likely to suffer from deep vein thrombosis, or blood clotting in the deep veins of the body."
The standard response by conventional oncology to prevent infection and deep vein thrombosis (blood clots) during treatment like thalidomide and dexamethasone is to give the partient antibiotics and coumadin.
Multiple Myeloma Patients On Thalidomide At Risk For Infection Despite Preventative Medication (ASH 2009)
The important things to remember about supplementation during conventional chemo are three things-
1) Supplementation has been show to enhance the effectiveness of standard chemotherapy-
2) Antioxidant supplementation such as vitamins B and E have been show to help prevent side effects like peripheral neuropathy- coQ10 helps prevent cardiotoxicity-
3) Coumadin supplementation is difficult with potential negative side effects. I take fish oil, vit E, vit D and nattokinase to manage my chronic blood clot (as a side effect from my chemo).
David Emerson
The woman who researches articles and studies for the Galen Foundation and beating-myeloma.org (she is both a research librarian and a breast cancer survivor) asked me yesterday if it is okay to find studies on preventing cancer as well as researching therapies to fight a myeloma diagnosis? In other words, what are myeloma survivors trying to do? Are we trying to prevent a myeloma diagnosis, prevent progression to the next stage or prevent a reoccurance of the cancer that we have been diagnosed with in the first place?
The article linked below makes the case for grouping all three. Or it eliminates the distinction of diagnosis, progression and relapse.
Old Ideas Spur New Approaches in Cancer Fight
1) "Gene mutations are part of the process of cancer, but mutations alone are not enough. Cancer involves an interaction between rogue cells and surrounding tissue"
2) "The basic idea — still in the experimental stages — is that cancer cells cannot turn into a lethal tumor without the cooperation of other cells nearby. That may be why autopsies repeatedly find that most people who die of causes other than cancer have at least some tiny tumors in their bodies that had gone unnoticed. According to current thinking, the tumors were kept in check, causing no harm."
3) "It also may mean that cancers grow in part because normal cells surrounding them allowed them to escape. It also means that there might be a new way to think about treatment: cancer might be kept under control by preventing healthy cells around it from crumbling."
4) “What it means, if all this environmental stuff is right, is that we should be able to reverse cancer without having to kill cells. This could open up a whole new way of thinking about cancer that would be much less assaultive.”
5) "Others are studying drugs like statins or anti-inflammatory drugs that may act by affecting signals between surrounding cells and cancers."
Curcumin, fish oil, grape seed, green tea, milk thistle- all these supplements affect the signals between surrounding cells. This article supposes the idea that this may an effective method for keeping the cancer in check.
I think this may be what happens to me when I supplement with the above, when I exercise, when I practice whole body hyperthermia.
David Emerson
If you have just been diagnosed with multiple myeloma or you have undergone chemotherapy for myeloma you should give serious consideration to supplementing with milk thisle (sylimarin).
Milk thistle supplmentation will protect liver function while take during chemotherapy and milk thistle will help heal liver function when taken after chemotherapy according to the documents below.
Milk thistle shows potential -- documented potential -- in helping cancer patients
"A new study, published online today in the journal Cancer, finds that milk thistle may help reduce the liver inflammation associated with chemotherapy. Many people may nod knowingly -- the herb has been used for centuries to treat liver problems."
Milk Thistle Treats Chemotherapy-Induced Hepatoxicity
"There are also no hepatoprotective medications that allow chemotherapy to continue to be administered while preserving liver function," write Kara M. Kelly, MD..."
- Milk thistle is a plant whose fruit and seeds are used to make remedies for liver and bile duct ailments (see Question 1).
- The active ingredient found in milk thistle is silymarin, an antioxidant that protects against cell damage (see Question 1).
- Milk thistle has been studied in laboratory cell lines and animal tumors for its potential to make chemotherapy less toxic and more effective, and to slow the growth of cancer cells (see Question 3 and Question 5).
- Milk thistle is usually taken in capsules or tablets (see Question 4).
- No clinical trials using milk thistle or its active compounds in patients with cancer have been published (see Question 6).
- Very few bad side effects from the use of milk thistle or silymarin have been reported (see Question 7).
- It is not known if milk thistle may make anticancer medications or other drugs more or less effective when taken with them (see Question 7).
- The U.S. Food and Drug Administration has not approved the use of milk thistle as a treatment for cancer or any other medical condition (see Question 8).
- Milk thistle is available in the United States as an herbal dietary supplement (see Question 8).
David Emerson
A clinical trial sponsored by the NIH to determine the effectiveness of maintenace therapy of revlimid after a single peripheral blood stem cell transplant is linked below.
Drug for Multiple Myeloma Demonstrated to Significantly Extend Disease-Free Survival
Yes, this clinical trial shows evidence that maintenance therapy in the form of revlimid after a pbsct extends event-free survival or progression-free survival.
It is important to understand exactly what this means. Taking revlimid as maintenance therapy will, on average, help you stay in remission after your bone marrow transplant.
1) "Among the patients who received placebo, half had their myeloma progress (worsen) within an estimated 778 days. In contrast, for those patients taking lenalidomide, a median time to progression cannot be defined because fewer than half the patients had worsening of their myeloma. This represents a 58 percent reduction in the risk of disease progression for the group taking lenalidomide. This difference in time to progression was highly statistically significant."
However, it is important to understand two things that this clinical trial also determined.
- that revlimid maintence therapy does not necessarily help you live longer.
-that revlimid maintenace therapy will result in the usual side effects associated with regular revlimid therapy.
2) "However, the trial has not yet shown evidence of an overall survival benefit."
3) "The types of side effects observed in this trial were similar to those observed in other clinical trials with lenalidomide."
Revlimid maintenance therapy will result, on average, in progression-free survial. But it doesn't necessarily result in a longer life. And revlimid maintence therapy will result, on average, in side effects.
David Emerson
The article linked below talks about the damage a class of chemo drugs call "anthracyclines." The article refers to breast cancer and implies that the negative effects of anthracyclines are new or not previously know.
"New findings suggest that the risks associated with a class of chemotherapy drugs widely used to treat breast cancer outweighed their benefits in some patients."
This information is not new. The excerpt below if from December of '07.
"Dennis Slamon, MD, PhD, director of the Revlon/UCLA Women's Cancer Research Program of the University of California at Los Angeles, revealed that his research had shown anthracyclines to be effective only in a small minority of women with breast cancer. For perhaps 90 percent of women, these drugs have little or no benefit - and carry the risk of some potentially very serious adverse effects, including cardiac damage."
Also, the article below specifically talks about thalidomide being more effective for newly dx mmers than VAD-
Please do not undergo VAD therapy or any anthracycline chemotherapy.
David Emerson
The quality and quantity of information/studies available now pertaining to vitamin D and curcumin (to name two supplements) is now overwhelming. I don't know what reporters are talking about when they write that survivors who take non-conventional therapies do so without proper "evidence."
In a today's post on Margaret's Corner, four studies about vitamin D and myeloma were discussed.
1) " I am really pleased with what I found on PubMed: quite a few studies on multiple myeloma and vitamin D levels. Almost 100, in fact!"
2) " this July 2009 Mayo Clinic study concludes that vitamin D deficiency may portend poorer outcomes in subjects with MM (see: http://tinyurl.com/yz67bxn)"
Margaret raises issues like vit D 2 vs D3 (I take D3), renal insufficiency, dosing, serum blood levels and others.
1) I believe that "vitamin D3, cholecalciferol" is correct.
2) The optimal blood serum level is " optimal level of 75 nmol/l"-
3) As for dosing- the RDA is believed to be inadequate to maintain the above dose. I use Life Extension Foundation blood testing which identified my blood serum level to be 36.9 ng.ml with a normal range of 32.0-100.00- I don't know how the two measurments compare. The RDA is 400 mg and the loading dose is much larger amounts such as 5000 mg for some period and then a daily dose of 1,000mg.
Please talk to your doctor about this- calcium supplementation and bone situation should be taken into account.
The subject page for vitamin D is linked below-
David Emerson
If you or a loved one is diagnosed with multiple myeloma, you need to understand bone health. To understand bone health, you should learn about calcium supplementation, bisphosphonate therapy and the side effect called "osteonecrosis of the jaw."
Calcium and bones-
Bisphonphonate therapy- scroll down...
The article linked below puts the odds of ONJ for myeloma patients undergoing bisphosphonate therapy at 11%. I have read estimates of ONJ for mmers up to 20%.
The important things to remember are what increases the risks for ONJ and managment techniques for this side effect if you get it.
David Emerson