Beating Myeloma Blog
I am skeptical whenever I read anything about the study of longevity. I think the reason for my skepticism stems from my belief that the science of longevity is easily corrupted by people's desire for immortality. The desire for immortality, like the desire for the cure for cancer is, at the very least, a long way off. At the very most, it is a fiction.
The article linked below, however, talks about the human genetic make-up that leads to longer life spans. After years of studying cancer, health and lifestyles that leads to longer lives, I believe that humans can influence their own genetic expression through lifestyle. The article talks about the identification of about 150 genes that are present in people that live to be 100 or more.
Scientists Discover Keys to Long Life
"The researchers, who studied more than 1,000 people over the age of 100, identified a set of 150 unique genetic markers that, taken together, are linked to extreme longevity"
The questions that come to mind when a cancer survivor reads this article are A) what genes lead to longer life and B) can humans influence how their genes express themselves?
"No one knows the complete prescription for a healthy long life. But genes that help control cellular responses to famine, drought and other survival stresses may play a key role in staving off the diseases and chronic ailments of aging, research suggests....While a healthy lifestyle is paramount, such genetic factors appear to become more important the longer we live."
Why do I think human beings can influence how their genes express themselves and even their own genetic make-up?
David Emerson
There is a relationship between HPV (genital warts), myeloma and cervical cancers. Science does not know what this relationship is, or what it mean for myeloma survivors like me. I have genital warts. I have multiple myeloma. I found the article about curcumin and it's ability to "aid you in pushing it (myeloma) out of your body." This article does not support any of its statements with studies or any citations. No support whatsoever. However I have read many articles talking about curcumin's anti-myeloma, anti-cancer, anti-inflammatory, anti-oxidant and anti-angiogenic properties.
So I am hoping that curcumin will also aid me in pushing it (my cancer) out of my body.
Extrachromosomal human papillomavirus (HPV) in multiple myeloma and monoclonal gammopathy of unknown significance (MGUS) patients.
"We have previously identified HPV in a chronic benign plasma cell tumor of the cervix, multiple myelomas and monoclonal gammopathy of unknown significance (MGUS)."
Human papillomavirus is associated with monoclonal gammopathies of unknown significance
"We have previously identified human papillomavirus (HPV) in a chronic benign plasma cell tumor of the cervix and in the bone marrow of multiple-myeloma patients. In the following study, we expanded upon our initial observation by analyzing 14 patients with MGUS..."
Cures For Genital Warts
"Although officially nobody can say there is a cure for the virus, there are actually several herbs that can aid you in pushing it out of your body.
One is called Curcumin and is available, in capsule form, at most natural food stores. An extract of the Tumeric Root, Curcumin is an antioxidant that acts against Human Papilloma Virus and protects the DNA of the cells in our bodies. There are even studies under way to test Curcumin’s effect on different forms of cervical cancer. Initial findings are promising and could lead to a wider acceptance of herbs as healing agents."
David Emerson
Dear fellow myeloma survivors and caregivers-
Just a short blog post to list my recent blood work. Listed is the date, my name, a short comment from my hematologist/oncologist and then the blood work results. I continue to remain cancer free. I have been completely normal since 4/99.
6/23/2010
Component Results
David Emerson
Your results below. Looks good.
Best
Dr. McCrae
Component Value Low High Units
KAPPA, FREE, SERUM 6.8 3.7 19.4 mg/L
Fin
LAMBDA, FREE, SERUM 10.1 5.7 26.3 mg/L
Fin
K/L RATIO, SERUM 0.67 0.26 1.65 mg/L
Fin
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Ralph Moss, in the May 30, 2010 newsletter Cancer Decisions, talks about a study indicating a longer "event-free survival" after a pbsct with myeloma patients who take low dose revlimid after sct therapy.
"This concept (low dose chemo) was given support from two studies to be presented at the 2010 annual meeting of the American Society for Clinical Oncology (ASCO). Both studies show that patients who received long-term treatment for multiple myeloma and follicular lymphoma remained free of disease progression longer than patients who were taken off their treatment once the disease was in remission."
Three important points are made to clarify the study's findings-
1) " First, the data does not reveal whether such treatment improved the rate of overall survival in such patients. This is key. Both multiple myeloma and follicular lymphoma are diseases in which people often live a decade or more post-diagnosis. So it is too early to say if longevity is truly being increased, or if doctors are simply changing the shape of the curve leading to the patient's demise"
2) "Second, we do not know what the adverse effects would be of taking these drugs for long periods of time. These drugs have many possible side effects, and some of these might reveal themselves only after prolonged use."
3) "Finally, the cost of maintenance therapy could be very high for the individual and for society. Two years of maintenance with rituximab is $50,000. Lenalidomide costs even more, about $6,000 per month (Pollack 2010). Think about the implications of this. In 2009 there were 20,580 new US cases of multiple myeloma (ACS 2009). If each of these patients received rituximab for a two years, this would cost society about $1 billion. Follicular lymphoma is the most common form of lymphoma About 30 percent of low-grade lymphomas are of this type. If we estimate about 20,000 US cases of follicular cancers per year, then that would also cost $1 billion per yearly cohort. But as each year's new cohort of NHL patients would need to be similarly treated, it would add additional billions in cost (and in chemotherapy sales). As the late Sen. Everett Dirksen once said, in a different context: "A billion here, a billion there, pretty soon it adds up to real money."
I understand the Ralph is saying in his article and I agree with his assessments. I want to add that revlemid and thalidomide are "antiangiogenesis chemotherapies. Dr. William Li points out, in the video linked below, that there are a number of natural forms of antiangiogeneisis supplements including curcumin and resveritrol.
I have been taking both curcumin and resveritrol for about 5 years now and have not experienced any side effects from them and I have remained in complete remission since 4/99.
William Li: Can we eat to starve cancer?
http://www.ted.com William Li presents a new way to think about cancer treatment: angiogenesis, targeting the blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that beat cancer at its own game.
David Emerson
The practice of extending remission after a peripheral blood stem cell transplant through "maintenance therapy" is still relatively new. The article linked below documents a clinical trial that extended remissions by 54% after pbsct.
"Maintenance therapy with lenalidomide (Revlimid) after autologous stem-cell transplant reduced the risk of recurrence by 54% after three years, compared with placebo, according to Michel Attal, MD, of Purpan Hospital in Toulouse, France."
Further, many of the trial patients had not come out of remission after the end of the three year study period was reached.
"After three years, he said:
- 143 of the 307 patients in the placebo arm had either progressed or died, compared with 77 of the 307 in the lenalidomide arm.
- Median progression-free survival was 24 months in the placebo arm but has not been reached in the lenalidomide arm.
- Progression-free survival was 34% at three years in the placebo arm and 68% in the lenalidomide arm, for a hazard ratio of 0.46, which was significant at P=10-7."
As the first bulleted point indicates, 25% of the trial subjects (77 of 307) did not respond to Revlimid therapy.
The video linked below is of Dr. William Li, student of Dr. Judah Folkman, father of anti-angiogenisis therapy in myeloma.
William Li: Can we eat to starve cancer?
http://www.youtube.com/watch?v=B9bDZ5-zPtY&feature=email
"William Li presents a new way to think about cancer treatment: angiogenesis, targeting the blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that beat cancer at its own game."
Dr. Li talks about natural forms of angio-genesis therapy such as curcumin and resveritrol. A myeloma patient has to wonder if natural forms of anti-angiogenisis supplementation will also extend remission the same way Revlimid does.
David Emerson
In the 18 minute video linked below, Dr. William Li, student of Dr. Judah Folkman, father of anti-angiogenesis in cancer therapy, talks about the existance of natural forms of anti-angiogenesis therapy.
Myeloma patients are familier with this concept because of conventional chemotherapies such as thalidomide and revlimid. What is interesting is that Dr. Li identifies natural sources of anti-genesis- some that are more potent than conventional therapies.
Please take 18 minutes to watch this important video.
William Li: Can we eat to starve cancer?
David Emerson
There may be many reasons why patients don't discuss the cost of treatments and drugs with their oncologists. When I was undergoing my induction chemotherapy it never occured to me to ask my onc about any of the costs. I assumed my insurance would pay for anything my onc prescribed.
Boy was I wrong.
The cost of drugs like thalidomide, velcade and revlimid are high and going higher. Some drug therapies may not be covered by your insurance. The fact is, managing your cancer means also managing your financial health.
"In the case of prescription drugs, we know that 20%-30% of patients report cost-related nonadherence," Alexander adds. "As former Surgeon General C. Everett Koop famously pointed out, 'Drugs don't work in patients who don't take them.'"
The cost of managing myeloma has become complicated.
Myeloma diagnosis? Average annual costs of Thalidomide, Velcade, Revlimid plus organizations to help-
David Emerson
The supplement curcumin has been shown time and again to benefit cancer survivors. Myeloma survivors, in particular, will benefit from supplementing with curcumin- whether taking curcumin by itself or to enhance the effect of velcade.
The b-m.org archives are filled with articles, studies and posts about the benefit of curcumin.
A nagging concern with curcumin, however, is the low "bioavailability" of curcumin, that is the difficulty the human body has in absorbing curcumin into the blood stream. The study linked below showes the benefit of piperine (pepper) in enhancing the bioavailability of curcumin-
Influence of piperine on the pharmacokinetics of curcumin in animals and human volunteers.
"The study shows that in the dosages used, piperine enhances the serum concentration, extent of absorption and bioavailability of curcumin in both rats and humans with no adverse effects."
David Emerson
I wrote a blog last week about the benefit of vitamin k supplementation for blood and bone health and for vitamin k's anti-cancer properties.
"Because of vitamin K 1,2,3's broad array of health benefits, all that I focus on for my own health including heart health, bone health, blood health and anti-myeloma and anti-cancer properties, I will begin supplementing with broad spectrum vitamin K in the comming weeks."
I came across this study by the Mayo clinic this morning. Though non-hodgkins lymphoma is not multiple myeloma, there are many documented similarities between the two blood cancers.
Therefore, not only does vitamin k supplementation have a documented anti-cancer effect, it also has documented bone and blood health effects.
Vitamin K May Protect Against Developing Non-Hodgkin Lymphoma, Say Mayo Clinic Researchers
"At the 101st Annual Meeting of the American Association for Cancer Research (AACR), the researchers report that the risk of developing Non-Hodgkin lymphoma was approximately 45 percent lower for participants who had vitamin K intakes in the top quartile of intake in the study (>108 ug/day), compared to participants who had intakes in the bottom quartile (<39 ug/day). This association remained after accounting for other factors such as age, sex, education, obesity, smoking, alcohol use and intake of foods with high amounts of antioxidants."
David Emerson
There are two basic kinds of clinical trials. The first is the kind sponsored by the government and the second is the kind paid for by the manufacturer. The editorial linked below is is talking about the kind of clinical trial sponsored by the government.
"The government-sponsored trials can be invaluable in comparing one therapy against another (manufacturers rarely want to put their products up against a competitor’s), combinations of therapies, or therapies for rare diseases with little commercial potential."
As a myeloma survivor, I care about comparing one therapy to another (melphalan compared to thalidomide) or combinations of therapies (VAD compared to RDV)- and myeloma, at 20,000 diagnoses per year, is pretty rare.
"Yet a series of reviews in recent years found that the testing operation is mired in bureaucracy and poorly coordinated. A typical trial must navigate past dozens of overlapping reviews by different boards and agencies that must approve the original concept for the trial and then the protocol that will govern how it is conducted before the investigators can start enrolling any patients.
The average time between developing the concept for a study and getting it started is about 2.5 years. The longer a study takes to get started, the more likely it is to become scientifically out of date, and the less likely it is that doctors or patients will want to participate"
Further, clinical trials paid for by drug manufacturers are rife with problems "Marcia Angell has been a stern critic of U.S. health care in general and the pharmaceutical industry in particular. She is scathing on the topic of how clinical trials are conducted in America" http://en.wikipedia.org/w...
Cancer survivors and caregivers need to understand that they cannot rely exclusively on conventional therapies that come from clinical trials. When my oncologist told me that "nothing more can be done for you..." she meant was that nothing more can be done conventionally speaking. The fact is that there were many more therapies that were available for me to try.
Thank goodness I did.
David Emerson
Readers of this myeloma blog know that I rely heavily on supplementation as a componant of my anti-cancer lifestyle. I take lots of vitamins, minerals and antioxidants. The main reason for my extensive supplementation habit is because I have several long-term side effects and health concerns in addition to my goal of remaining cancer free. So the question today is, do I add yet another supplement to my daily regimen?
I have come across a number of articles/studies recently that point to vitamin K 1,2,3 as both an anti-cancer supplement and specifically anti-myeloma supplement.
"Vitamin K2 induces differentiation and apoptosis in a wide array of human cancer cell lines. A search of PubMed reveals studies published in 2008 that discuss the role of different forms of vitamin K in the treatment of cancer.1-15
A goal of cancer researchers is to identify compounds that cause cancer cells to self-destruct. Vitamin K2 has been shown to induce apoptosis (cell destruction) in leukemia cells in vitro. A study published in July 2008 identified yet another pathway by which vitamin K2 causes the degradation (via autophagy) of leukemia cells’ own components. The scientists noted that apoptosis and autophagy in leukemia cells could be simultaneously induced by vitamin K2.8 In the laboratory, vitamin K2 demonstrates inhibitory effects against myeloma and lymphoma, suggesting possible applications for individuals fighting these all too common cancers.40"
"This newly discovered subfamily of receptor tyrosine kinases has also been associated with cell growth regulation and tumorigenesis. Discussions of vitamin K-dependent proteins related to lymphoid malignancy, (25) lung malignancy, and multiple myeloma (26) have been published. While they were not related to possible treatment of malignancy with vitamin K derivatives, they are mentioned here for completeness."
Because of vitamin K 1,2,3's broad array of health benefits, all that I focus on for my own health including heart health, bone health, blood health and anti-myeloma and anti-cancer properties, I will begin supplementing with broad spectrum vitamin K in the comming weeks.
A cancer diagnosis thrusts a patient/caregiver into a world of medical jargon. From your diagnosis to your staging, your therapies, even achieving a (pr) partial remission, (vgpr) very good partial remission, or (cr) complete remission- all roads lead to confusing lingo and anacronyms.
The key to surviving cancer is to understand conventional, complimentary, integrative and CAM therapies as fully as possible.
Over the past few years, conventional oncology has developed a number of "novel" therapies- chemotherapies that can put a patient into remission for a time. These chemotherapies are called novel because they are new- not yet FDA approved and not the standard of care. Combinations of these novel therapies can put large groups of patients into remission- again, for a time.
Therefore, it is more important than ever for the myeloma patient to understand what clinical trials are- what is being evaluated, the phase of the trial, 1,2 or 3, and what the trial might mean for you.
The article, linked below, in The Myeloma Beacon, explains the clinical trial process thoroughly. My writing about this article should not be taken as an endorsement of clinical trials or conventional therapy. Bringing your attention to this article means two things- first, myeloma patients need to understand every therapy-conventional, integrative or CAM, that is available to him/her and second, the article linked below explains clinical trials well.
Guide To Clinical Trials For Multiple Myeloma Patients – Part 1: Learning About Clinical Trial
"This guide, which will be published as a series of articles over the next couple of weeks, is intended to help clarify the clinical trial process and to answer common questions so that you can decide whether a clinical trial is the right option for you. The guide will explain the different types of clinical trials in this first article, and subsequent articles will address common myths, provide answers from physicians to common questions, describe patients’ clinical trial experiences, and provide resources for finding a clinical trial."
David Emerson
As a myeloma survivor, I am lucky in that I have never had problems with my spine. There is frequent discussion, questions, etc from mmers who have spine problems asking about kyphoplasty and vertebroplasty. I came across an article this morning that explains the basic differences.
"Vertebroplasty is a treatment for pain. Theoretically, 2 mechanisms may account for the pain reduction associated with the injection of methylmethacrylate. The first mechanism may be as a result of acrylic fusion of the fragments into a single block, preventing the painful motion of the individual fracture fragments against each other. The second mechanism of pain reduction may be related to the heat produced by the polymerization process as the acrylic hardens. An added benefit is that deposition of acrylic within the vertebra significantly strengthens osteoporotic bone, reducing the likelihood of repeat fracture.
Vertebroplasty does not restore the height of the compressed vertebral body. A related procedure, kyphoplasty, is intended to restore lost height by inflating a balloon tamp within and between the fracture fragments prior to the infusion of methylmethacrylate. The procedures result in similar relief of pain due to vertebral compression fractures."
In 1984, vertebroplasty was first successfully performed in France for the treatment of a cervical vertebral hemangioma (see image below).1
In a vertebral hemangioma, the fine trabeculae are replaced by venous channels, which predispose the patient to painful microfractures.
Since then, the application of vertebroplasty and kyphoplasty have been expanded to include the treatment of the intense pain caused by vertebral compression fractures (see image below) that is refractory to conventional therapies such as analgesic use, bed rest, and bracing. Vertebroplasty may also be applied prophylactically to an at-risk vertebra between 2 other abnormal vertebra.
Anterior wedge compression fracture with intact posterior vertebral cortex.
Vertebroplasty and kyphoplasty involve the injection of an acrylic cement under local anesthesia and either fluoroscopic guidance or, less commonly, CT guidance to control the pain of vertebral fractures associated with osteoporosis, tumors, and trauma (see image below). Typically, vertebroplasty is performed in an outpatient setting, while kyphoplasty typically requires hospital admission. Pain reduction or elimination is immediate, and the risk of complications is low. Neither vertebroplasty nor kyphoplasty is intended for the treatment of intervertebral disc disease or arthritis.2
Anterior wedge compression fracture after fusion of the fracture fragments with methylmethacrylate.
Vertebroplasty is a treatment for pain. Theoretically, 2 mechanisms may account for the pain reduction associated with the injection of methylmethacrylate. The first mechanism may be as a result of acrylic fusion of the fragments into a single block, preventing the painful motion of the individual fracture fragments against each other. The second mechanism of pain reduction may be related to the heat produced by the polymerization process as the acrylic hardens. An added benefit is that deposition of acrylic within the vertebra significantly strengthens osteoporotic bone, reducing the likelihood of repeat fracture.
Vertebroplasty does not restore the height of the compressed vertebral body. A related procedure, kyphoplasty, is intended to restore lost height by inflating a balloon tamp within and between the fracture fragments prior to the infusion of methylmethacrylate. The procedures result in similar relief of pain due to vertebral compression fractures.
Fractures and osteoporosis
The fractures may be as a result of bone weakened by osteoporosis, trauma, or tumors such as metastases, multiple myeloma, and hemangioma. Osteoporosis, however, accounts for most fractures. The disease accounts for an estimated annual incidence of 700,000 fractures per year; of these, approximately 260,000 are vertebral compression fractures. Once a vertebral compression fracture occurs, the risk of additional fractures in adjacent vertebrae increases 5-fold.
Fractures are identified in 26% of women aged 50 years or older and are radiographically present at a rate of 500 cases per 100,000 persons in patients aged 50-54 years and 2,960 cases per 100,000 persons in patients older than 85 years.3 Vertebral compression fractures are twice as common in females,4 occurring in 153 females per 100,000 compared with 81 males per 100,000. For reasons not clearly understood, only one third of spinal compression fractures are painful; most of these are refractory to medical management. The remaining patients report a history of significant spinal pain in the past or do not have pain at the time of diagnosis.
There have been many articles and studies pointing out that multiple myeloma increases the risk of a blood clot or deep vein thrombosis.
What is different about the article linked below is that it talks about a study that clearly indicates that MGUS, monoclonal gammopathy of undetermined significance, also can lead to blood clots-
Arterial and venous thrombosis in monoclonal gammopathy of undetermined significance and multiple myeloma: a population-based study.
"Patients with multiple myeloma (MM) have an increased risk of venous thrombosis. Interestingly, excess risk of venous thromboembolism has been observed among patients with monoclonal gammopathy of undetermined significance (MGUS)."
I have taken broad spectrum enzymes to reduce my risk of blood clots. Papain breaks down blood clots IN ADDITION to breaking down myeloma cells.
"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."
David Emerson
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