Why do people die from Multiple Myeloma? Lack of Awareness??????

3/21/2012

When I ask the question it is more of a shout to the world -- because I feel that many people die sooner than they need to, and I just hate the thought of it! I am just beside myself in understanding why there is such a difference between what is and what could be. That is the reason I started this blog in the first place. The what could be is that many centers have patients who live for an average of 10 years or more, and the average life expectancy for all multiple myeloma patients is just 4 years based on the most recent National Cancer Institute survival data. So why the big gap between the two?

Some of it is understandable, because I have seen patients who have been given just decadron as their only care when I know this is just such a substandard treatment. Then there is the patient who choses to only do holistic treatment. Or the patient who choses no treatment, because his faith will heal him. I, however, also have faith, but that faith is that my doctors will be guided by the hand of God. This was their choice, and I can understand it, but I certainly do not agree with the choices, and unfortunately the outcomes were inevitable. And one reader commented that it is caused by the lack of health insurance, and I agree that this has a an impact. However, only 16.3% of the US population does not have health insurance and the differences are not 15 or 20% but 200 to 1000%. So these cases I believe, are not the norm, and account for only a small amount of the difference. I can only therefore submit to you that this difference must be in the quality of care.

There are a number of people who somehow seem to beat the odds. Mike Katz, from the IMF(International Myeloma Foundation) is a 20-plus year survivor. Does the fact that he is aware of all the latest and greatest myeloma discoveries weigh at all in his longevity? Pretty dare good move Mike! Or Barb Hammack another 20-plus year survivor from the myeloma listserve(a patient to patient forum) who's doctor happens to have gone to school with Dr. Berenson. And Dr. Berenson a myeloma specialist from LA has some of the best survival statistics in the world. Are you starting to get the connection?

The point here is that there is a big difference between the skills of a myeloma specialist, and that of your local oncologist. Andrew Shorr of Patient Power had an interview with a Dr. Bensinger( a multiple myeloma specialist) and asked the question about whether patients should seek a second opinion. His reply "I do think it's very important that patients with newly diagnosed myeloma consider a second opinion. And the reason is that this is not that common a disease. Despite the increased awareness of the disease in the community and among physicians, this is still a relatively rare disease. There's only about 17,000 new cases in the US. It's only one percent of all cancers and only ten percent of all blood cancers. And so it's a relatively uncommon disease, and I think there's so much new information out there that even practicing oncologists can't always keep up with the new information. In addition, they should be made aware or least the patient should be made aware of possible trials that are available to them. That's how we've made all the progress in the treatment of this disease, is through clinical trials." So if this belief exists in the Multiple Myeloma specialist community, then why is there still such a disparity in outcomes? Sorry Folks, you got me? I can only speculate.

Part of it may just be that the disease is just so rare that the dissemination of this information would never reach the light of day if not for organizations like the IMF(International Myeloma Foundation). How many people know that March is Multiple Myeloma awareness month? The IMF has been at the forefront of this education process, but unfortunately the National Cancer Institute numbers continue to lag those at the best institutions. So if this life saving information is not reaching the myeloma patient community, how can we improve the awareness?

In this day of the internet, Facebook and Twitter, I therefore recommend that each of you send the following link to this page: http://myelomasurvival.com/3/post/2012/03/why-do-people-die-from-multiple-myeloma.html to all of your Facebook friends and Twitter followers, just to let them know that it is Multiple Myeloma Awareness Month and that a second opinion with a myeloma specialist could just "SAVE A LIFE". I will almost guarantee that one of the people you send this to will know a Myeloma patient who could benefit from this information. Because I have found that "Knowledge is power" and "Ignorance can kill!"

God bless all who have to be on this journey/ [email protected]

27 Comments

Floyd Boyle

4/21/2013 01:11:36 pm

I was diagnosed with MM in Dec. of 2012. I have been given Velcade and now the oncologist wants me to take Revlimid 10 MG capsules. Medicare has denied coverage so our supplemental insurance won't kick in anything. Is there somewhere else or an organization where we can go to get this medicine? We have been told it would cost about $4,000 a month. We are retired and on limited income. We can't do that at all! Can you give us some hope. I am 82 and was in very good health until this hit me. I eat right, no sugar or red meat and eat a lot of fish. I take vitamins regularly. Please consider a response to this memo. Thank you.

Gary Petersen link

4/24/2013 02:00:56 pm

Floyd, Do you have Medicare Part D, which is the drug plan. If so they should pick up much of the cost of this drug, but if not then you can sign up for Part D at the next opportunity. In the meantime Celgene the maker of Revlimid has a program for patients in your predicam ent. You can reach them though the link: http://www.celgenepatientsupport.com/ Also the Myeloma Beacon has a link discussing the same question, and you can find it at: http://www.myelomabeacon.com/forum/the-cost-of-revlimid-what-do-you-pay-t123-30.html

A good listing of all the copay assistance programs can be found at the attache link: http://www.themmrf.org/living-with-multiple-myeloma/additional-resources/

The IMF has a toll free hotline can be found at the link: http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=2991&aTab=-1

Finally, the hospital where you are being treated should have a department that provides help for their patients and be your advocate to obtain the drugs. Floyd, good luck with this and may God Bless your Myeloma Journey/Gary.

Amy Morrison

6/30/2013 08:30:07 am

You can apply to the Chronic Disease Fund. They are very good with helping people with limited income,

Kat H

9/8/2013 04:23:44 am

My brother was told he had Multiple Myeloma and went to the UAMC for diagnosis. It was MGUS, not Myeloma. We know UAMC has some of the best survival rates in the world, but he was told by his insurance company they would NOT pay for treatment there - only diagnosis. Treatment would have been 'out of network' - costing him hundreds of thousands of dollars he did not have. I'm sorry, but this says insurance IS still a huge issue in the treatment of this disease. We need to have clinics set up who completely follow the success of these best clinics - so that it can spread everywhere.

Gary Petersen link

9/8/2013 07:04:09 am

Kat, you make an excellent point about the limits that some insurance companies have on the choices that patients have.
Some people have no insurance at all, and that makes it even
more problematic. I do not know where you live but I have a list of myeloma professionals, most of which could follow a UAMS protocol. You can find this list at: http://www.myelomasurvival.com/myeloma-specialists-listing.html
I also wrote another blog post that you may find of interest which is at the link: http://www.myelomasurvival.com/1/post/2012/07/multiple-myeloma-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis.html
The very very good news is that you now have a great baseline with all of the best tests in the world from one of the best facilities in the world, which indicated your husband does not have Multiple Myeloma but have MGUS. I believe 90% of people with MGUS never progress to full blown Myeloma. Kat, that is great NEWS!!!!
See how valuable a second opinion from a multiple myeloma specialist can be. Gary

Terri

9/19/2014 01:50:35 am

I have medicare plus blue. They will only pay for 1 stem cell transplant. I often hear of people having 1, 2 or even 3 SCT. So, I am wondering how this is going to effect my over all survival? I think insurance can have many effects in a persons health in ways we don't even realize. I know many people who have insurance but not very good & high out of pocket expenses. A lot of those people wait way to long to get checked out for issues they are having. Catching something like this when smoldering as opposed to full blown when your back is broke can have a major effect. Just my 2 cents worth.

Gary Petersen link

9/20/2014 01:58:05 am

Terri, you make some very good points. I think Medicare is way behind the curve when it comes to treatment. Dr. Tricot would say the dual transplant is really one high dose transplant but broken into two phases to limit toxicity. And unfortunately too many patients find out they have MM when they are too far gone and have just a few months of life, and finding it at smoldering would allow time to be our own best advocate and find the myeloma specialist of your choice. Good luck and may God Bless your myeloma journey. Gary

Mike Jones

3/8/2016 01:27:44 pm

Kat - Even though you have a MGUS diagnosis...please...please insist on periodic tests to make sure it does not progress. I was MGUS for 10 years, then mid 2015 mine went to MM. I pray that doesn't happen in your case, but keep a close eye and react quickly if numbers start climbing.

Karen chapin

10/5/2013 07:47:20 pm

My oncologist keeps clearing me from my NHL Lymphoma. I finally looked up the symptoms of Multible Myeloma because I feel sooooooooooocrummy. My kidneys are working too hard. I always feel like I have a bladder infection but Dr. says no. My kidneys hurt and sometimes it feels like I am being punched there. Worst of all my Back pelvis hurts and aches. I am exhaustes and so limited suddenly. Though highly intelligent and a reader, I am feeling very confused and its all happening at an excellerated rate (sp) My father died of Multible Myeloma. I do not fear dying. Its just like traveling to me to unknown places and meeting new people and old friends. But I am in the middle of three quilts and finishing scrap books etc. I seriously do not have the time for illness. I survived lymphoma by have had to date equivilant sp of over 5000 x-rays. What should my Oncologist look for, I have not brought it up because I am weary of being treated like I am looking for something to be wrong. I am so mean or blessed, I was on RCHOP chemo with a truck load of Prednisone. I never got sick. I watched cooking shows and ate like a pig. I am not scared. I am concerned about knowing, or not. Karen

Rick

1/2/2014 08:27:07 am

Make sure you get results back from a specialist go and see a specialist somebody works strictly with multiple myeloma!!

Tracy

6/28/2014 05:45:16 pm

Hi, my Dad has MM stage3, they found it by doing a bone marrow test, not he said, ask for one, YOUR THE BOSS OF YOUR BODY, if you have ins.request/demand to ur doc u want one, then you will know, God Bless

Tracy

6/28/2014 05:46:46 pm

Sorry, typo, not fun test to have Dad said

Gift Ideas for Boyfriend link

10/14/2014 08:40:46 pm

This is a wonderful article, Given so much info in it, These type of articles keeps the users interest in the website, and keep on sharing more ... good luck.

Gary Petersen link

10/6/2013 02:20:25 am

Sometimes doctors will request a bone marrow biopsy for NHL Lymphoma, and this would show signs of MM. If you had one then your doctor would have this and could share it with you. Other tests are blood and urine tests to check for protein in either. And one of the best indicators is a light chain test which will show if you have elevated lamda or kappa light chains. A check of your M spike is also a good measure, but the light chain is better. If you are concerned get a second opinion from a MM specialist. Best Regards/Gary

Tracy

6/28/2014 05:49:06 pm

Gary, said it perfect,same things,tests, my Dad had done, when found MM stage3! Great wording Gary!

Mia link

1/28/2014 02:22:40 am

Hey there, you have here a quite fine article right now! I like so much a finely done site.

Tori

2/27/2014 11:07:38 am

Well said and I couldn't agree more.

Gary Petersen link

2/27/2014 11:28:10 am

Thanks Tori, and I hope we can increase myeloma awareness and SAVE LIFE. Gary

Dianna miller

3/27/2014 12:30:05 pm

Hello my name is Dianna Miller. I was diagnosed with Multiple Myeloma in October 2012. I do not have all of my lab information right now to give you however, I have had 2 stem cell transplants I have just finished my 100 the day of my second transplant. I have 3 different doctors in the cancer center that I see and one of the doctors is pretty sure I will not be in remission and is advising me to prepare for a donor transplant. I just had my 100 the day tests on March 3 rd and meet with the docs on March 31. I met with one of the docs 3 weeks ago and he told me of all the side affects that could come from a donor transplant along with the possibility of getting GVHD and I will be out of work for 6-12 months and maybe not even return to work. There is no guarantee that this will cure it or if it does cure the myeloma then there maybe other issues. I am feeling good and not having any difficulties with my health right now and I just wonder how many people out there have the transplant and have been happy that they did or if they had the transplant and wished they didn't I would like to get other views on this I only know of one mm doc in our area she is not in her office much and is out on maternity leave. I mainly see the transplant doctors and that is there focus and I want to believe their are other options out there. Is there anyone that could give me their thoughts and experiences on this.

Dianna

3/27/2014 12:39:54 pm

I just wonder if the donor ( allo) is worth all the risks, not having a job I am 49 years old. Sometimes quality of life is better than quantity. I am really having a hard time trying to make a decision. What good is an added couple of years if you are miserable and everyone around you is too. Also, this is coming from a transplant doctor not a mm doctor. Is he saying transplant because that is what he does? I have read a lot and some say allo cures mm others say it comes back if I could get another 20 years no question whether I would do it but an added year or two and be sick most of that time? Does anyone have any thoughts or experience with this.

Gary Petersen link

3/27/2014 09:53:32 pm

I would ask this question of Dr. Orlowski who will be on Cure Talk at 6:00 pm EST today March 26th. Go to http://www.myelomasurvival.com/myeloma-blog.html
Some things you may want to find out are: Is your MM doc an MM specialist with a lot of experience with mm patients, do you have any high risk features or are you low risk, Did you have consolidation, and then maintenance after your second transplant. The last thing is find an allo transplant location that has a high success rate and you can go to the following link to find out which have half the average death rate : http://www.myelomasurvival.com/1/post/2014/01/mirror-mirror-on-the-wall-who-has-the-best-allo-survival-of-them-all.html
Also Pat Killingsworth has just competed a multiple part blog post on the allo at: http://multiplemyelomablog.com/
Some points of note, younger patients do much better than older, mini allo has better survival, velcade use during and after transplant seems to be very successful in mitigating GVHD, an exact match sibling donor has better survival than non siblling donor. Best Regards/Gary

Tracie Roos

8/25/2014 09:42:27 am

I was just diagnosed 7/25/14. I have standard risk myeloma. My oncologist is running everything by mayo clinic in Rochester because our local cancer center was selected to have a partnership with mayo. Only one in the pacific nw. Isn't this the same as getting a second opinion from a specialist?

Gary Petersen link

8/28/2014 06:06:58 am

Standard Risk, you are in the money. It is even better than a second opinion as long as the plan is being developed by Mayo and your local oncologist is executing it. You may want to go to a well know CIBMTR hospital if you get a Stem Cell Transplant because those with experience have a better survival rate than those that do not do a lot of transplants. Best Regards/Gary Petersen editor@myeloma survival.com

Michelle Clever

9/2/2014 06:54:52 am

My husband passed away in May he was 52. We pretty much hit the bad luck jackpot with Myeloma. Stage IV at time of diagnosis, renal impairment, broken vertebrae etc. went to general oncologist which I believe was our first mistake. Had two mini auto transplants which did not even give us two years remission. Then he started on Velcade which gave us another good two years. However, when it came back the third time it was with a vengeance. Nothing worked. You are correct in my opinion to see a specialist right from the start. A mistake I regret to this day. If you are high risk like my husband the DNA is so sensitive that they have discovered that some treatments actually accelerate the disease. Cytoxin melphalan were sighted as the specific drugs not to use. See a specialist!!!

Click here link

4/13/2015 01:12:41 am

one of my sibling was told he had Multiple Myeloma and went to the UAMC for conclusion. We know UAMC has a portion of the best survival rates on the planet, yet he was told by his insurance agency they would NOT pay for treatment there - just conclusion. Treatment would have been 'out of system' - costing him a huge number of dollars he didn't have. I'm sorry, however this says protection IS still an enormous issue in the treatment of this malady. We have to have facilities set up who totally take after the accomplishment of these best centers - so it can spread all around.

Gary Petersen link

4/14/2015 12:31:15 am

[email protected], you make an excellent point. I often wonder why some of the best programs in the country do not have mini treatment and transplant centers all over the country. People could go to their local Mayo Health Mart or Barlogie Myeloma Mart, and get the same level of service across the county for all blood diseases. In this way low risk patients would get the 10 to 15 years of life vs. the current average of just 4 years. Sounds like a great idea to me!

terry

10/22/2015 02:46:44 pm

Just diagnosed with plasmacytoma from biopsy of a tumor that is growing inside of my left mandible. But the biopsy report says plasmacytoma vs multiple myeloma. I am now waiting for my insurance to approve a radiology oncologist. Wont he have to do a body scan to determine if I have any more tumors for them to determine if this is multiple myeloma? My blood work is normal so far, but I have pain in my lower back and numbness in my thighs. And of course alot of pain in my jaw. Thank you for this blog. I am so scared right now and reading all of this info is very helpful.

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Why do people die from Multiple Myeloma? Lack of Awareness??????

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