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

5/24/2014

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

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

5/10/2014

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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.

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Multiple Myeloma - What Would The Hematologist Say?

5/4/2014

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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

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

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

Multiple Myeloma - What Would The Hematologist Say?

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