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Myeloma Stories

Michele G. – Bradenton, FL

I went for a routine physical exam and my doctor told me that my blood work showed I was anemic. She did some additional tests and then referred me to a hematologist/oncologist. At this point, I still wasn’t worried. I thought there must be some benign explanation. So, off I went to the oncologist who did more tests.

All I can say is that I was shocked and horrified to discover that I had a blood cancer called multiple myeloma, for which there is no cure, at just age 57. I had faced cancer once before, having had breast cancer 8 years before. But that was easy to deal with compared to this. My breast cancer was found early and the prospects for my long term survival were fantastic.

The first few months of living with MM were very tough for me. I was depressed and scared about the survival statistics, and in my view, the prospect of being in a lot of pain and in general losing my life as I knew it. I would spend time with our grandkids and think about never seeing them grow up. I would travel and wonder if it was my last trip. At the same time I had these feelings, I was trying to be positive, though that was difficult to do.  Learning yoga and practicing meditation and guided imagery helped me cope and focus on inner healing. And, little did I know that I would be a survivor for many years and still going strong.

Here I am, 10 ½ years after my myeloma diagnosis, and I have a normal and wonderfully full life. I have hardly ever looked or felt like I had any problem. I have been lucky that my disease has always been just in the bone marrow and I have never had physical problems from it (other than some minor neuropathy from treatment drugs). I was on oral treatments for 8 years, and was able to play with my grandchildren (even welcome a new one to the world), play golf, and travel the world.

Five years ago, my husband and I decided to buy a home in Florida and now spend winters there and summers in WV. We now have a fantastic life in both places.

The only blip in my life was a decision to have an autologous stem cell transplant in 2012 because other treatments stopped working and my disease progressed for the third time. I had a very easy time with transplant and was back to walking a mile and a half a day and playing golf in just two months. Hair took longer to come back but that was a small price!

I have been overjoyed to see two of our grandkids graduate from high school and college, and another three will graduate high school this year. I promised myself when I was diagnosed that I would live to see all of them graduate from college and get married some day.

Since my health is so good now, we are going to China this year, and I am very excited about this trip. Now, I realize how much I have going for me, and have a positive outlook every day. Most important of all I have a wonderful, loving husband who talks about all of the years we are going to have together doing things we enjoy. Strong Support from family and friends, as well as my great medical team, have helped me immensely too.

I know I have been lucky in terms of the type of myeloma I have and that it has had such little impact on my life. However, I really believe that keeping positive throughout has helped so much. I even do visualization every day of ridding my body of myeloma cells and living a healthy and joyful life. So, I expect to fulfill my doctor’s predication that I will live to be an old lady (which he defined as in my 80s)!

– Michele

Categories
Myeloma Stories

Ronald C. – Bradenton, FL

I was diagnosed with Multiple Myeloma 9 years ago. It was a major shock to me, and of course I went to the internet for information. Seeing that the average life spam with MM was 3 years, I was ready to die soon.

Then, my oncologist said he would make sure I was going to live for a while. He put me on Thalomide for a year, but my IGG was still high. Next was infusions, and some powerful ones at that. I had to have ice on my hands and feet while on chemo. I was losing weight, skin off my hands and feet, and told my doctor I would be better off dying than going through that. He then put me on and old fashion oral chemo, Alkeran, and it worked. My IGG would go down, then I would be taken off, and back up it went. I did this for about 4 years, and he became worried that I could have other problems being on and off. He then put me on Revlimid, a maintenance drug. My IGG went from close to 8000, down to 948 , and it has stayed there. (The cost is unbelievable, $9200 for 21 pills). I take one a day for 21 days, then off 7, then start the 21/7. It works.

9 years, feel great, no problems, and expect be around for many years. There are so many new medicines around that seem to give hope to everyone. I have not had to have a Stem Cell or Bone Marrow transplant. My doctor is an is a great doctor and he cares about how I am doing. Plus I have a great God, and prayers do work. Be encouraged. It looks like the future is looking better all the time.

— Ronald C.