”There was a preacher who fell in the ocean and he couldn’t swim. When a boat came by, the captain yelled, “Do you need help, sir?” The preacher calmly said “No, God will save me.” A little later, another boat came by and a fisherman asked, “Hey, do you need help?” The preacher replied again, “No God will save me.” Eventually the preacher drowned & went to heaven. The preacher asked God, “Why didn’t you save me?” God replied, “But I sent you two boats!”
For those patients who have a myeloma specialist on their team and are part of an on-line or local support group, there is no need to read further unless you are just interested in understanding how smart you really are by being your own best advocate.
You may be saying what on earth is he thinking. Of course, I would double my life expectancy if I could!! Lets just look at the math. There is about 80,000 myeloma patients in the USA and if the world has the same rate then there are a total of 1,750,000 people in the world living with multiple myeloma. So it is my guess that the estimated 200 multiple myeloma specialists in the world are not able to see all of these patients. Nor do I believe that there are enough support groups in total or support groups local to myeloma patients to satisfy this patient population. So why do you need to be part of a support group and have a myeloma specialist on your medical team?
1) If you go to my web site www.myelomasurvival.com you will find that the average life expectancy for a myeloma patient is currently listed at 4 years by the US National Cancer Institute, whereas the patients of multiple myeloma specialists have excellent survival rates and have life expectancies of 8 to 10 years.
2) In addition support group membership has the benefit of learning more about the newest and best treatments, getting feed back on side effects, caregiver fears and help, medical billing issues, friendship, fellowship, and support. An audit that I conducted with some of the IMF support group leaders indicated that active support group members lived twice as long as the US National Cancer Institute published average.
There are two reasons why I think that people are not taking advantage of these two key elements for longer life expectancy. The first is that the best multiple myeloma specialists have a life expectancy two times greater that the 4 years quoted by the National Cancer Institute, and if all people were obtaining this quality of care the National Cancer Institute life expectancy would be closer to 8 to 10 years. In addition, you can get a second opinion for less than $300 from the web site 2ndMD at https://2nd.md/disease/multiplemyeloma, however it is my understanding that some of the multiple myeloma specialists listed have had few if any requests for a second opinion. The second reason is that there are two on-line support groups, one by the LLS, Leukemia, Lymphoma, and Myeloma Society which meets every Tuesday and is based on a Chat Line format, and the Cure Panel Support Group that is once a month, and uses an on-line interactive format. I have participated on both and there were only 2 to 3 people participating, and I was one of them. How sad!
If you are one of the hundreds of thousands of patients who do not have access to a support group you can be one of the initial members of two great support groups.
– The Cure Panel On-Line Broadcast is hosted by Pat Killingsworth, who is a MM author, a tireless advocate, and founded an IMF support group in west Florida. You can sign up for the next support group meeting which will be held on June 27th at 6:00PM if you just CLICK HERE. The topic for the meeting – “Be Your Own Best Advocate: Becoming an Empowered Patient!”
– The LLS On-Line Myeloma Chat is held every Tuesday and you can register if you just CLICK HERE.
– Another good resource is the Acor Myeloma Patient to Patient Support Group which is one that has been around for years and has close to 2000 members. You can sign up to be on the list if you CLICK HERE.
– If you do not have access to a myeloma specialist you can get an on-line second opinion from one of four excellent myeloma professionals at the web site.
– And if you don’t have access to one of the two possibilities above for a second opinion, you can ask your hematologist/oncologist to follow the mSmart program published by Mayo Clinic. mSmart happens to be a cook book method of myeloma treatment that is intended to allow your hematologist/oncologist to follow the same methods used by Mayo Clinic and then to hopefully duplicate for you Mayo’s excellent life expectancy and survival rates. You can read my blog post on this subject if you CLICK HERE.
As always good luck and may God Bless your families myeloma journey/ Gary Petersen firstname.lastname@example.org