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Reflections From A Newly Diagnosed Multiple Myeloma Patient

Home/Reflections From A Newly Diagnosed Multiple Myeloma Patient

Reflections From A Newly Diagnosed Multiple Myeloma Patient

Here is a link to an article, written by a newly diagnosed multiple myeloma patient for a small, Minnesota newspaper:  A Hefty Decision With Multiple Myeloma.

Written by James Clark, the piece shares an overview of treatment options from a new patient’s perspective.  Here is a small excerpt from the story:

My consultation with the doctors at the University of Minnesota gave me a lot more information about my disease. They said when my treatment began, my bone marrow was 85% saturated with cancer. When I think back about how I felt and what I was doing, I would believe that. During that period, I had to deal with my Mom’s death, take care of my wife and deal with her death. In October, it was my turn as all that turmoil was over with. Was I too late? I guess time will tell on this one.

It was recommended that I have a transplant done. They said I would have to move to Minneapolis since I live far from there. I would have to spend 3 weeks in the hospital, then spend another 2-3 months in a center where I would need a caregiver with me 24/7. They have a powerful chemo drug that totally wipes out your bodily defenses and causes various side effects such as mouth sores, swallowing difficulties, nausea, lack of appetite, just to mention a few. The side effects do pop up within a year after the transplant.

When the transplant is done, then I would have to go on maintenance for the year. Maintenance consists of taking a chemo pill such as Revlimid, Thalomid, Steroids, etc. which is given orally. You continue to get blood tests each month to monitor your condition.

If you go just on maintenance, then you take an oral chemo pill, plus steroids to supplement the pill. This will last for a year. You need to have some bone marrow extracted so that they can see where you are at. If no cancer is contained in the marrow, then you are in remission. Treatments will stop until the cancer comes back.

Studies show that having a transplant and maintenance may provide you with 10 years of extra life. Whereas just going on maintenance alone, may provide you with 5 years of extra life. My dilemma? Having a transplant would put my body through more pain and turmoil. Still have to have maintenance, the cancer will still return. Going on just maintenance would just continue with what I all ready am doing, my body is used to this, and still, the cancer will return. Either way, the cancer comes back.

I am going to make you read the article to find out what decision James makes. 

Please note the information he shares isn’t completely accurate:

Studies show that having a transplant and maintenance may provide you with 10 years of extra life. Whereas just going on maintenance alone, may provide you with 5 years of extra life.

There are currently no studies limiting someone who chooses maintenance over a transplant (SCT) to “5 years of life.”  James also doesn’t take into account he also has an option to decide to get a SCT later–or try a more aggressive, Total Therapy approach which uses tandem transplants, along with an aggressive maintenance therapy regimen.   I’m glad to see James is having his cells harvested either way.

The “ten years of extra life” part for a younger patient without any genetic/chromosomal abnormalities who recieves quality care is in-line with recent estimates.  But that is all they are–estimates.  After all, the two most effective and often used novel therapy agents today–Revlimid and Velcade–haven’t even been around ten years.

All in all, James writes this article with the not uncommon pessimissem I often see in younger, newly diagnosed patients.  Once one has time to adjust to the cold, hard reality of their own mortality, five or ten years starts sounding better.

And of course, if you can live another five years, who is to say you can’t live ten.  And if you can live ten years, who is to say you can’t live longer…  Hope springs eternal in the minds of multiple myeloma survivors, fueled by the rapid rate of research in the field.

Feel good and keep smiling!  Pat