Blog Posts

High Risk Multiple Myeloma - Finally There Is a Hopeful Prognosis!!!

8/14/2014

*** Can Success with High Risk Myeloma mean the cure for all myeloma is getting closer? Dr. Sagar Lonial of Emory University discussed High Risk Disease and his teams success at the treatment of this extremely hard to treat form of myeloma on the August Cure Panel Broadcast . You can listen to the rebroadcast of this exceptional program if you CLICK HERE. ***

There is light at the end of the tunnel for high risk Multiple Myeloma

A recent post on Pat Killingworth site discussed the Emory University's Dr. Sagar Lonial's views on Stem Cell Transplant. You can see his post if you CLICK HERE. However, the item that caught my eye was a comment by one of his readers who quoted some quite remarkable high risk multiple myeloma survival rates. He mentioned a December, 2013 article in Leukemia which stated the following:

Consolidation and maintenance therapy with lenalidomide, bortezomib and dexamethasone (RVD) in high-risk myeloma patients

A K Nooka, J L Kaufman, S Muppidi, A Langston, L T Heffner, C Gleason, D Casbourne, D Saxe, L H Boise and S Lonial

Prior studies have shown that myeloma patients exhibiting either genetically defined high-risk disease or plasma cell leukemia have a poor outcome with a median overall survival (OS) of 3 years. Results of IFM 2005-01 and 02 suggest that relatively limited bortezomib-containing induction regimens did not produce a major survival benefit among these patients. However, results of recent studies suggest that combination therapy may benefit these patients when given early and again later in the treatment. We evaluated a combination maintenance/consolidation regimen (RVD) following autologous stem cell transplant (ASCT) for high-risk patients to evaluate the impact of this approach on outcome. Following initiation of RVD maintenance, 51% of patients achieved stringent complete response (sCR), with 96% achieving at least VGPR as best response. Median progression free survival (PFS) for all patients is 32 months with a 3-year OS of 93%. The regimen was well tolerated with no grade 3/4 neuropathy. Early ASCT followed by RVD maintenance is a promising strategy for high-risk myeloma patients and delivered excellent response rates, and promising PFS and OS.

Why this has not been a headline story for myeloma everywhere is beyond me, and I am a little embarrassed that it has taken me this long to become aware of this data. The National Cancer Institute lists the average 3 year relative survival of all patients(high and low risk) at 60%, and the 3 year relative survival for the Emory trial of high risk patients is 98.8%. This is a truly remarkable performance where the subjects in the trial have a 3 year life expectancy nearly equal to the general population at age 70. Thank You Dr. Lonial for such remarkable work.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

4 Comments

Multiple Myeloma - Stay Alive, Act Went Your Temperature is 100.5 F!!!

7/27/2014

0 Comments

I recently received a email from a friend and fellow myeloma support group member. She wrote me this comment:

"Gary, I just got out of the Hospital and they diagnosised me as being sepsis. I had 3 days of IV antibiotics and sent home with on 10 more days of antibiotics. I found that this infection was so slow coming that some of the symptoms I though wee just going to be my lot in life. Like running out of breath when I was talking and my sinuses being stuffy all the time. I wound up vomiting and running a temp of 100.3 my GP told me to get right to the emergency room."

This reminded me how fast things can go from normal to really bad in a short period of time when you have a compromised immune system. This brought back memories of my own bout with septic shock caused by pneumonia, which in my case put me in the hospital near death. This is what I wrote at that time:

" I  had been visiting my family up north in Wisconsin, and having a wonderful Christmas. My daughter has a cold and my granddaughter has a cold as well and it seems that everyone in the state is hacking. But I am ready, at the first sign of anything I start on Tamiflu, and then as I start to get a fever the next day (Christmas) I start on my stash of Z-pak. After the first dose my temp goes down from 100.4 to 98.8, but the next day it is back up to 100.4. The last time I spiked a fever and waited to go in until it got to 103, I ended up in the hospital with septic shock. According to the Sepsis Alliance, 40% of patients diagnosed with severe sepsis do not survive. This number is greater for septic shock and a lowered immune system from MM makes it even higher. So this time we went in just as a precaution. At the Janesville, Wisconsin Mercy Medical Center Emergency Room they took tons of tests and determined I had pneumonia. They put me on an antibiotic drip, gave me a shot in the rear, and another antibiotic prescription to take in addition to the Z-pak. The next day my temperature was back to normal.

One of the reasons that we went when my temperature was 100.4 is that at the last IMF support group meeting the group leader, who went through a similar situation to what I describe in this paragraph, recommended that we not wait until 101 as most doctors recommend, but rather to go in at 100.5. I listened to her because she recently lost her husband and my friend from their episode. So her advice to be extra vigilant saved me from a long-term hospital stay at the least, and who knows what at the worst. If there is any take away from my story, it is that you should always, always err on the side of safety!"

The immune system responds to invaders by kicking out antibodies to fight infection, and it increases the body temperature to assist in the fight. If you have a compromised immune system, you can expect that the bacterial load would be much greater to get the same response. In other words, you may be as sick at 100.4 as a normal person at 103. This is not scientific, but in this way I can understand that there is a real reason for, and benefit of, an MM patient going to the doctor with a temperature much lower than that of a person with a normal immune system.

A recent Swedish study reported that multiple myeloma patients were found to be 7.1 times more likely to develop a bacterial or viral infection than the general population. The risk was especially high during the first year after diagnosis where the rate was 11.6 times that of the general population. Without a robust immune system, I would suggest all myeloma patients ask their doctors for a prescription for Tamaflu and an antibiotic so they will be available when needed.    Like our support group leader suggested, "Act at 100.5 to stay alive!"

Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

0 Comments

Multiple Myeloma - Kill The Root Kill the Cancer, Dr. Rodger Tiedemann Has Found the Root

7/6/2014

5 Comments

Dr. Robert Tiedemann was the featured speaker at the July 8th Cure Panel Broadcast. You can listen to a rebroadcast if you CLICK HERE. Nick Van Dyk provided a summary of the broadcast if you CLICK HERE.

Dr. Roger Tiedemann is a scientist at the Ontario Cancer Institute and a hematologist specializing in multiple myeloma and lymphoma within the division of Medical Oncology and Hematology at the Princess Margaret Cancer Center and is an Assistant Professor of Medicine at the University of Toronto with appointments from the Department of Medical Biophysics and in the Department of Medicine. Dr. Tiedemann is a New Zealand-trained hematologist and fellow of both the Royal Australasian College of Physicians and the Royal College of Pathologists of Australasia. He is an author of a US patent application for a new cell cycle therapeutic. His research focus includes multiple myeloma stems, progenitor cells, genomics and the development of new therapeutic strategies for myeloma based on an understanding of the tumor biology.

A brief explanation of his work can be found at the following link: http://www.uhn.ca/corporate/ForMedia/PressReleases/Pages/Rodger_Tiedemann_Myeloma_Relapse.aspx

In this publication they write, "Clinical researchers at Princess Margaret Cancer Centre have discovered why multiple myeloma, an incurable cancer of the bone marrow, persistently escapes cure by an initially effective treatment that can keep the disease at bay for up to several years.The reason, explains research published online today in Cancer Cell, is intrinsic resistance found in immature progenitor cells that are the root cause of the disease – and relapse – says principal investigator Dr. Rodger Tiedemann, a hematologist specializing in multiple myeloma and lymphoma at the Princess Margaret, University Health Network (UHN). Dr. Tiedemann is also an Assistant Professor in the Faculty of Medicine, University of Toronto.

The research demonstrates that the progenitor cells are untouched by mainstay therapy that uses a proteasome inhibitor drug ("Velcade") to kill the plasma cells that make up most of the tumour. The progenitor cells then proliferate and mature to reboot the disease process, even in patients who appeared to be in complete remission.

"Our findings reveal a way forward toward a cure for multiple myeloma, which involves targeting both the progenitor cells and the plasma cells at the same time," says Dr. Tiedemann. "Now that we know that progenitor cells persist and lead to relapse after treatment, we can move quickly into clinical trials, measure this residual disease in patients, and attempt to target it with new drugs or with drugs that may already exist.

I think you will find this of great interest, I know the panel is. Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

5 Comments

ASCO 2014 Multiple Myeloma Double Header

7/5/2014

0 Comments

Now that these broadcast have aired you can listen to the rebroadcast from Mayo Clinic's Dr. Shaji Kumar if you CLICK HERE. Dr. Durie's rebroadcast is now available if you CLICK HERE.

The ASCO (American Society of Clinical Oncology) annual meeting is now over and the experts have had a chance to digest the mountains of information on Multiple Myeloma presented at this important meeting. Two great opportunities to get some outstanding perspective about this data can be obtained at the following two presentations. I will be listening to Dr. Durie, and participating on the Cure Panel Broadcast with Dr. Kumar. This should be a great educational opportunity for all myeloma patients and caregivers.

Dr. Brian G.M. Durie will explain what’s new and exciting from the American Society of Clinical Oncology (ASCO), the European Hematology Association (EHA), and the International Myeloma Working Group Summit (IMWG) This teleconference will be held on Thursday June 26, 2014 at 7:00PM EST

Dr. Brian Durie is an attending physician at the Cedars-Sinai Medical Center, with offices in the Samuel Oschin Cancer Center. Dr. Durie's clinical expertise is in multiple myeloma. He is the Senior Advisor for Hematologic Malignancies and National Program Director for Multiple Myeloma and Related Disorders for Aptium Oncology. Dr. Durie founded and now chairs the International Myeloma Foundation and serves on its Scientific Advisory Board. Dr. Durie is also a Marquis member of "Who's Who in America" and "The Best Doctors in America. To register CLICK HERE.

Myeloma ASCO Updates with Dr. Shaji Kumar of Mayo Clinic on June 27 at 5:00 pm EST - This is the second year Dr. Kumar, who is one of the remarkable MYELOMA DREAM TEAM, will be providing his views on the most important findings presented at this year's meeting as well as discuss his views on the future of myeloma treatment. You can sign up and obtain more information on the program if you CLICK HERE.

Dr. Shaji Kumar is a hematologist at the Mayo Clinic Transplant Center in Rochester, Minnesota. He is American Board Certified in Internal Medicine, with medical interests in multiple myeloma and amyloidosis. Dr. Kumar completed medical school and his internship at the All India Institute of Medical Sciences in New Delhi, India. He completed two residencies in Internal Medicine – one at the Mayo Graduate School of Medicine and other at the All India Institute of Medical Sciences. Dr. Kumar completed his fellowship in hematology and medical oncology at the Mayo Graduate School of Medicine

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

0 Comments

Why Patient Advocate Voices are Important to the Multiple Myeloma Community - by Gary Petersen and Suzierose

6/22/2014

2 Comments

Why have myeloma patient advocates been so important to the success of the fight to improve outcomes for multiple myeloma? We advocates are motivated by the most basic human need, survival. There also is a belief that we can use our experience and knowledge of myeloma to provide help to others who find themselves in the same situation.

Unlike many diseases, myeloma is not just a rare cancer but it is also a cancer where the experts have divergent views. For many of us, this factor alone creates lots of anxiety when diagnosed. Not only have we not heard of the disease, but we also learn our doctors do not have definite answers for how to proceed. We find ourselves seeking out multiple voices and resources to learn not just about what the disease is, but also what therapy we should select. We become stakeholders in the process. Patient advocacy is one way we do so. We may not always agree, but we respect each other's educated views, and are unafraid to debate them rigorously. From this we all learn. Maybe this is why we have such a visceral response to censorship, and to those who try to manage the message.

The Patient Advocates usually conduct extensive research, find the best sources of information, but still feel there is an unfulfilled need, and are determined to make a contribution. Some of these contributions include:

The International Myeloma Foundation (IMF) is a non-profit organization dedicated to the education, research, and treatment of multiple myeloma. It was founded in 1990 by Brian and Susie Novis, along with hematologist/oncologist Dr. Brian G.M. Durie, directly following Brian Novis' myeloma diagnosis at the age of 33. Kathy Giusti saw a need to bring together researchers and industry to prioritize clinical research and drive the pipeline for new & effective therapies, so she initiated the MMRF.

When Pat Killingsworth was diagnosed, he became a support group leader and wrote several books to help patients understand what it is like to live with Myeloma. Then there is Nick Van Dyk, who was diagnosed as a young man and decided to share his myeloma journey on a blog describing his choice for very aggressive therapy. If you talk to Pat Killingsworth or Nick Van Dyk, you discover that their patient advocacy views on therapy are similar in some regards, but differ when it comes to conservative or aggressive therapy and the institutions they selected for therapy. Then there is Jenny Alstrom and Dana Holmes, who looked over the myeloma landscape and discovered a different area that was missing. Jenny Alstrom believed that patients needed a professional dialogue platform with access to the brilliant minds in research to share the evolving clinical choices on the cutting edge, thus we have mRadio. Dana Holmes couldn't find a source that focused solely on asymptomatic (smoldering) myeloma patients, and she initiated a Facebook forum where patients can exchange information and keep abreast of the rapidly changing therapy guidelines for a group of myeloma patients being designated today as pre-myeloma. In addition there are our stories. Gary Petersen identified the need for myeloma patients to be able to learn what the survival statistics were for myeloma patients at different treatment institutions and academic centers. Suzierose started a blog that focused on the science behind the therapies as they move from the bench to the bedside and she shares the latest published clinical literature with trial outcomes. Others include Matt, Cindy, Lizzy, Nancy, Danny, Mike, and more. And we can not forget those like Barb and Sandy that are no longer with us.

All of these patient advocates have one thing in common, they understood the need to share and empower those who were diagnosed with myeloma so as to derive the best possible care. More importantly they felt the need to become part of the solution. Which brings us to the focus of this post. As patients there is no group for whom it matters more, and so editing out critical information is detrimental to the overall goal of educating as many patients as possible to save lives.

When we are confronted with an illness many feel is incurable and life ending, it feels like the future has been snatched away from us and not by personal choice. Such that when those who have far less urgency seek to take away our voice, we push back on any censorship to control communication from the true stakeholders in all of the research, data and choices that are being made daily to ensure that we not only survive but thrive with myeloma. The internet, advocate web sites, IMF, and MMRF allow the advocate forums to provide their frank, independent, educated, and uncensored contributions to the myeloma patient survival effort.

Working together "WE WILL SAVE LIFE"!

2 Comments

Myeloma Beacon's - "Choosing a Mutiple Myeloma Specialist" My two cents!

6/7/2014

3 Comments

The Myeloma Beacon recently ran an article on how to "Choose a Multiple Myeloma Specialist", and although well written, it seems to minimize the one absolutely key requirement. Other than in the title it did not emphasize the necessity to make sure the person is a skilled multiple myeloma specialist.

You can read the article if you CLICK HERE. It says you can find the one specialist who is right for you if you answer the following questions.

1. Is the doctor a Teller or an Asker?
2. Is the doctor well established?
3. Does the doctor have ties to the area?
4. Is the doctor certified in hematology?
5. Is the doctor covered by your insurance?
6. How much are you willing to do to get the doctor you want?

All good questions, but only after you are satisfied that the doctor is one of the 100 or so SKILLED multiple myeloma specialists in the USA and maybe double that worldwide. I left the following two comments, which I hoped would help to make this point, however for some reason my comments are considered spam, or they chose to leave them in limbo awaiting moderation. I obviously irritate someone at the Beacon. It is for this reason I have chosen to write this article because I feel my two comments are worth airing. And for all of those who feel their comments have been censored about this subject, please feel free to provide them in my comments section. My comments were as follows:

Comment 1 -

I think the most important part of this article is the title, "Choosing A Multiple Myeloma Specialist". Based on the National Cancer Institute's data, the average life expectancy is just 4 years, whereas many Myeloma Specialist's provide survival data of 8 to 12 years on average. If you find one who is more compatible with your needs, all the better. But with maybe 100 really good ones in the US, availability, supply and demand may play a major role. Best to all on your myeloma journey.

Comment 2 -

Paul, your main point is right on, “find a multiple myeloma specialist which fits your requirements” if possible. However, there is no degree called Multiple Myeloma Cancer Specialist that I am aware of. I will provide you with what I believe is the definition of a Multiple Myeloma specialist.
Characteristics of Multiple Myeloma Specialists
1. First, they are usually hematologist-oncologists.
2. They practice at hospitals that have a defined MM treatment program or department.
3. They attend the big MM seminars, ASH (the American Society of Hematology) and ASCO (American Society of Clinical Oncology).
4. They have MM publications and have most likely given presentation at ASH and ASCO.
5. They participate in clinical trials for MM.
6. They usually are located at larger, more prestigious hospitals like Mayo Clinic in Rochester, Dana-Farber Cancer Institute, MIRT (Myeloma Institute for Research and Therapy) at UAMS, Moffitt Cancer Center, M.D. Anderson Cancer Center et al.
7. The facility or department where they are located has myeloma in the name, like UAMS-MIRT or IMBCR( Institute for Myeloma & Bone Cancer Research).
Another step in finding a specialist near you is to search the web using the key phrase “(insert your state) Multiple Myeloma Treatment Centers”, or “(insert your state) Multiple Myeloma Treatment Programs". If you find a Multiple Myeloma specialist, or you want to get more information on one of the doctors listed here, you can search his name as follows: “Dr.(insert the name) Multiple Myeloma Specialist”. If you get a lot of great multiple myeloma information, chances are you have someone who is 95% more qualified than your average local oncologist. Just try this with a google search of Dr. Rajkumar, Dr. Barlogie, Dr. Berenson, Dr. Durie, or Dr. Palumbo.

I hope that this helps you to find a multiple myeloma specialist, and I have found some patients will get a consult with one of the best MM specialists and have the treatment in their local area using one of the 500 CIBMTR (Center for International Blood and Marrow Transplant Research) facilities. Not all hematologist/oncologists are skilled multiple myeloma specialists.

Just wanted to have a chance to put my two cents into the conversation. Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

3 Comments

Delayed Diagnosis of Multiple Myeloma! - What Can SAVE YOU?

5/24/2014

0 Comments

Just Outrun the Reaper!!

The data is in, 25% of patients are diagnosed 306 days after first symptoms, and the average life expectancy of an untreated myeloma patient is 9 months or 279 days. This results in the experience the UK's National Institute of Health reported that 20% of newly diagnosed patients die in the first 2 months. This sounds grim, however there is hope, if you RUN, DO NOT WALK and get IMMEDIATE treatment from a multiple myeloma specialist. The USA SEER statistics show a 25% average first year death rate, whereas the listed myeloma specialists have a I and 2 year death rates of between 0% and 12%. So you are at least 2 times more likely to die if not treated by a myeloma specialist. You can find a listing of myeloma specialists if you CLICK HERE.

I would like to think that no one would be put into this situation, and we all would receive a timely diagnosis and have adequate time to evaluate our situation. But If you are diagnosed with stage 3 myeloma, I would say this is your one best chance of survival. One day, but not anytime soon, the general practitioners of the world will become more skilled at multiple myeloma diagnosis, and the older population(60+) will get yearly blood tests that help to find anemia, high calcium, and elevated proteins in the blood. But now with just 3% of the population with any knowledge of mulitple myeloma, I think this will not happen for a long long time.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

0 Comments

The Multiple Myeloma "Catch 22"! What is Wrong with this Picture?

5/10/2014

0 Comments

For some myeloma patients they are caught in a CATCH 22. CATCH 22 is when you are caught in a can't win situation. There was a Vietnam War movie called CATCH 22. In order to get out of Vietnam on a medical discharge you had to be insane, but if you tried to show them you were insane they would not believe you and make you stay. So what is the Catch 22 for some 25% of myeloma patients.

What is wrong with this Picture?

According to a recent study, it takes an average of 163 days from the first symptoms to diagnosis for myeloma, and 25% of patients take over 306 days to diagnose.

The average life expectancy for myeloma patients if not treated is 279 days.

No wonder the UK reports 1 in 5 patients die in the first 2 months, and 1/3 of the patients in the USA are gone by the second years. They basically are dead at diagnosis! We must find a way to get the patient awareness up from 3%, and find ways to improve the General Practitioner's dismal ability to diagnosis this disease. The training of the GP must be improved to identity myeloma in a far more timely fashion. We must find ways to get the word out to the family doctor. And some of the doctors who take over a year to diagnose patients must be held to account.

The only bright spot I see in this data is that if you can make it past the first year, you will live on average of 7 to 9 years not the 4 as noted in the most recent National Cancer Institutes SEER database. Far more if you have a myeloma specialist on your team. The bad thing is that 20% or more of patients died in the first year from a delayed diagnosis.

Without a major Public Service Awareness Campaign our best approach is for EACH of us get this message out to our facebook, twitter or other social media contacts and give it to our family doctors. Just Click the Twitter and Facebook icons at the end of this post. The United Kingdom's National Institute of Health has put out a pamphlet for family doctors, just CLICK HERE. World renowned myeloma specialist Dr. Edward A. Stadtmauer of the University of Pennsylvania has a web based educational program for general practitioners and it should be required reading CLICK HERE.

Good Luck and may God Bless your families Cancer Journey. For more information on mutiple myeloma go to www.myelomasurvival.com or you can follow me on twitter @grpetersen1.

0 Comments

Multiple Myeloma - What Would The Hematologist Say?

5/4/2014

0 Comments

When you go to a truck stop and find it loaded with cars, you jump to the conclusion the food is wholesome, reasonable prices and good. It is what we call anecdotal evidence. This is the same type of conclusion you might come to when you see that most Multiple Myeloma advocates, like Pat Killingsworth, Nick Van Dyk, Lizzy Smith, Matt Goldman, Jenny Ahlstrom, Jack Aiello, et el. have a multiple myeloma specialist on their team, and they all are doing well and some have lived 2 to 5 times the national average life expectancy.

However, when you have a nationally known food critic recommend food as 5 star, you don't have to assume it is good, you know it just might be an excellent food choice. I got the same feeling when a hematologist wrote and told me he self diagnosed, but researched his disease and found some of the best multiple myeloma specialists to plan and lead his treatment. So, " What Would The Hematologist Say?" Thank you Dr. Robert Ira Lewy for being so kind and caring to let patients know that the myeloma specialists are a special breed of hematologist/oncologist and are a requirement for effective treatment.

"I'm a hemalogist/9 yr myeloma patient and I wanted to thank you for bird dogging this data. I get treated at SloanKettering by the same fellow who did my tandem at MD Anderson originally, and I cheat by seeing Niesvisky at Cornell (actually they both know and hold my hand). Of course sometime they mildly disagree.I was lucky to have a 7 yr stringent CR, on Rev, then relapsed late 2012, now on Velcade and Dex with small spike. Possible the most advanced cases are both found after neglect or lack of routine lab, they get poor treatment too? That is sobering.

Sergio Giralt did the transplants and has another in the freezer for me. He is now at Sloan Kettering heading transplants there. My myeloma is familial so subconsciously that's why I went into hematology."

"When I diagnosed myself with myeloma in 2005 i had only anemia and no kidney or bone disease. Revlimid was just being used at Mayo with velcade and decadron so it's effectiveness really hadn't been established yet. The CALGB has a protocol using tandem transplants which I opted for. It proved to be the right decision as I needed the second transplant to get a complete remission which then lasted almost 7 years maintained with revlimid which by then was approved tho when I started I got it from the manufacturer. I considered another protocol, total therapy 3 which was being offered at UAMS and also was a tandem transplant but involved two years following of intense chemotherapy. Results from it have been excellent, better than the CALGB study, but both are highly effective. I was advised to not get the UAMS study by some colleagues because of the high toxicity and future risks of complications such as myeloid dysplasia. So far my blood counts have been excellent. In relapsed on revlimid in 2012 and after 6 months needed treatment only because of a rising M spike. I chose another Mayo program, CyBorD, and got a partial remission which has continued to improve over a year of treatment. During that time more stem cells were collected for an anticipated salvage transplant if needed. If and when my present treatment fails I'm a candidate not only for transplant but for Carfilzomib/Pom, daratumumab or oral velcade, among other choices. Another choice is a transplant with high dose Revlimid preparation

My treatments have been easy and I only have spent one night in the hospital ever. While I have had friends who rapidly progressed and died from their myeloma, sometimes getting quick enough rescue treatment, or progressing to kidney failure after 10 years of frustrating treatments, I'm hoping to stretch my course out.I don't think vaccines or immunotherapy will be ready for relapsed patients such as myself and will probably remain part of transplant regimes.

I should add that even though i am an expert, I waiting too long to get treated initially, so human nature plays a part. I might have had kidney damage or bone lesions tho fortunately I didn't. Tho I knew all the other experts, my care would have been the same if I had just gone to md Anderson, the Texas state cancer system where I was living. It allowed me to enter a study which was highly positive ,which I never would have entered if I had chosen a local cancer program. I expect my next treatment may be investigational too, tho some excellent drugs have been approved since then."

Dr. Lewy was in fact his own GP(General Practitioner), and even with his expertise, feels he should have started treatment earlier in his disease progression. A brief bio of Dr. Lewy is as follows.,

Robert Ira Lewy MC FACP

Diplomate American Boards of Internal Medicine and Hematology
Member,,American College of Physicians,,American Society of Hematology and American Society of Clinical ONCOLOGY
Franklin and Marshall College 1964 A.B.magna cum laude
University of Pennsylvania School of Medicine MD 1971
Mercy Catholic Medical Center 1977
Cardeza Foundation of Hematological Research 1979

Associate Professor of Internal Medicine, Baylor College of Medicine and University
Of Texas Health Science Center at Houston 1979-2005

Methodist Hospital, St Luke's Episcopal Hospital, Houston 1979-2005

Retired 2005

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

0 Comments

Multiple Myeloma Life Expectancy Prognosis Remains Stagnant for the Fourth Consecutive Year ! :( What is Wrong???

4/26/2014

9 Comments

If nothing changes, nothing changes! Every year in April the National Cancer Institute updates their survival data for all cancers, and every year I have high expectations the numbers for the average life expectancy for multiple myeloma will show significant improvement. And also in some small way I and my fellow advocates might have had a limited but important part to play in this success, and that our efforts would have some value to the myeloma patient community for this improvement in survival.

But as is the case again this year, the average life expectancy remains at just 4 years. It has not improved at all for the last four years. I had seen some progress in the 1st year survival and hoped this would translate into improvements in the two and three year survival the following year and it has, but only marginally. The two and three year life expectancy improved by 6%. The one year survival went down from 81.4% to 80.7%. To view the NCI myeloma survival table CLICK HERE.

So is this another example of insanity as defined by Albert Einstein? Do we continue to do the same things year in and year out, and expect the different results? On the surface I think not. We do see a number of new drugs coming to market, myeloma specialists have survival rates 2 to 3 times the 4 year average, Clinical Trials continue to identify new promising drugs like the monoclonal antibodies, and the continued and expanded efforts by patient advocates, doctors, IMF, MMRF, and LLS to improve awareness. Or is what we are doing the definition of "FUTILITY"? Futility is doing the wrong things over and over again and expecting different results. - Anonymous

Everything which has been accomplished seems to be the right things, however if the results do not improve, I can only think we are not pushing the right buttons to improve results in a Revolutionary not Evolutionary manner. Might we be missing the things which when accomplished would improve results in a Revolutionary way?

Let us look at the history of other cancers to see what in fact has caused their Revolutionary improvements.

Breast Cancer: Was it new drugs, new procedures, imaging, or breakthrough surgical methods that made such improvements? No it was awareness of the need for self examination and mammograms, and the great promotional and awareness work of advocates like Susan Komen and Breast Cancer ads everywhere.

Colon Cancer: It was the same thing here with advocates like Katie Couric, and improved awareness of the need for Colorectal Cancer Screening. Screening has gone up significantly which should result in an excellent improvement in survival because polyps are removed before they become phase 3 or 4 colorectal cancer cases. The big news here is that the rate of new cases per 100,000 population has dropped by 34% from 58 to 38 per 100,000. This represents 25,917 fewer colorectal cancer deaths each year.

I could go on, however we can learn from this success in other cancers. The UK's National Health Service has noted that 20% of myeloma patients die in the first two months after diagnosis, in the US one third of patients die in the first two years, 25% of patients are diagnosed more than 306 days after going to the family practitioner for the first time, the majority of patients are treated by a local hematologist/oncologist without a myeloma specialist as part of their treatment team, and in a study in the UK 97% of the population had never heard of multiple myeloma.

What could be done? I am no marketing expert, however it would seem we have a visibility issue. No one knows we exist. I often say you can not improve that which you do not measure, but maybe our biggest hurtle is that myeloma patients, family practitioners(GP's), oncologists, and the general population "Don't know what they don't know!" , and the general public and GP's will continue to not know until we find ways to get awareness up from 3% to more like 90%+. We need a major "Public Service Myeloma Awareness Campaign." I am coming to the belief that the numbers will not change until the general population and family practitioners know the symptoms, and oncologists know that they need a myeloma specialist on the treatment team. Otherwise, unless something changes, nothing will change!

Without a major Public Service Awareness Campaign our best approach is for EACH of us get this message out to our facebook, twitter or other social media contacts and give it to our family doctors. You may not know someone with myeloma symptoms but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post. The United Kingdom's National Institue of Health has put out a pamphlet for family doctors, just CLICK HERE. World renowned myeloma specialist Dr. Edward A. Stadtmauer of the University of Pennsylvania has a web based educational program for general practitioners and it should be required reading CLICK HERE.

The Symptoms of Multiple Myeloma can include:

Bone pain and skeletal fractures, including compression fractures of the spine, which can cause severe pain, particularly in the back. A backache that lasts for months can be a signal that multiple myeloma is affecting bones in the spine and/or the ribs.
Frequent infections, especially bacterial infections of the respiratory and urinary tracts, which occur because the immune system is weakened.
Fatigue, weight loss, and general discomfort caused by anemia (insufficient red blood cells).
Nausea, vomiting, altered mental state, depression, and headache, caused by abnormally high calcium levels in the blood (hypercalcemia).
Loss of kidney function, leading to fatigue, buildup of fluid in the lower limbs, nausea, and vomiting.
Bruising, rashes, nosebleeds, vision loss, headache, dizziness, and peripheral neuropathy (numbness, tingling, and burning pain in the extremities) caused by blood that has thickened (a condition called hyperviscosity) due to high levels of protein.
Shooting pains in the arms and legs caused by a tumor in the spinal column pressing on nerves.

In about one-third of patients, multiple myeloma is detected before symptoms appear through routine blood tests that show elevated levels of immunoglobulin proteins.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

9 Comments