Vancouver, B.C.; email@example.com
1962 / Class of 2003 / Type: IgG / Matched-donor allo transplant / Updated: 12/06
My Journey with MM started in April of 2003 following a mountain biking accident. A slight fall "tweaked" my back and I knew something was not right. A trip to the doctor the next week was followed up with x-rays which showed that I had a compression fracture on my lower back. Physio was recommended and with that things seemed to improve over the summer.
In the fall of 2003, I was out in my boat and when I jumped off to the dock my back literally gave out. I was stuck lying on the dock with the boat running. With one hand holding on to the boat I lay on the dock waiting for my friends to find me. They came down and found me, helped me to the car, and to home. From there, we called for an ambulance and I went down to Emergency where the gave me painkillers and sent me home. Over the next week things did not improve, so it was back to the doctor. He didn't want to do blood work but ordered a CT scan. On a rainy dark Friday my wife received a phone call from the doctor saying that "something" had show up on the CT scan and he wanted to see us that afternoon. After some small talk he told us that I had lytic lesions on my spine and the chances were it was either lymphoma, or Multiple Myeloma. He said he didn't know much about it and we were referred to an Oncologist the following Monday. From there it was off to the hospital for the all the tests and the confirmed diagnosis of MM.
I was put on a program of Dex, 4 days on and 4 days off, which I didn't tolerate very well. I found that I really bonked when I was off it, but it did do its job in reducing my protein levels. The decision was made to do a transplant. Most of the younger patients are given that option in Vancouver. I went through the priming chemo and stem cell harvest without a hitch, but at the next doctors' meeting I was told that they didn't want to use my cells because my protein level was high and the disease would just come back if they went that route. It was donor time and I was lucky that my sister was a perfect match. The thought of having an Allo transplant terrified me, as I have seen some of the stats and they didn't look too good.
On April 13th I was admitted to the hospital. It was extremely hard to say goodbye to the family. I tried to put on a brave face for my boys but I couldn't. I had 6 days of chemo and then the stem cell infusion. I felt pretty good for the first week and then I started to feel pretty lousy. It started with mouth sores, then nausea, then GVHD, then I passed out and reinjured my back. All and all in tough 7 weeks in the hospital both physically and mentally but I made it through and I am at home!
Today is day 75 and I am getting there. I still have little energy but it is coming back. The GVH seems to flare up and go away so I really don't know what it's going to do. I am on Prednisone and Cyclosporine for the GVH as well as medications for blood pressure. I anxiously await day 100 to see what the results of the transplant are. I consider myself a hopeful survivor at this point, as I am just post-transplant. I have a goal of being a survivor and making it through my boys' teenage years (they are 8 and 10). That would be a blessing. And I feel there is hope for this with all the research that is going on. If anyone wants to chat, email me.
April 10, 2006: Well I have just passed the 2 year mark since my stem cell transplant and it is amazing how life has changed. When I was first diagnosed I heard people talk about the experience of cancer and how cancer for them was a good experience in the way it impacted their life. Honestly at the time I thought they were NUTS! But now I can see where they were coming from. The life changes that I have gone through, some by necessity, and some by choice have been positive for me and the people around me. I spend more time with my children and just enjoy life more in general.
Since my transplant I have not had to go through any additional treatments and last summer I was back to sailing, biking, and walking. In October I participated in the Ride of the Roses in Texas which was a wonderful time and I rode 40 miles.
Kind of a ramble but I guess I just wanted to let those of you who are starting out on this journey that it does get better and you can live a wonderful life even though you have MM.
December 18, 2006: Well, time for another update. 3 years has passed since I was diagnosed, which for me was quite a day, as originally I was told that I would live about 3 years, so much for stats!! It is amazing to look back and see all the people who took time form their lives to support myself, my boys and their mother during this time.
I guess through all of this I have learned that I can have some days that I donít feel very well, but they are still great days. I was at the BMT ward today and saw some people currently undergoing treatment and was amazed how far I have come. I have received no further treatment for MM since my transplant and my numbers are the lowest they have been! Still dealing with GVHD but a small price to pay in the scheme of things.
Kind of a ramble but for those of you just starting out, there is a light at the end of the tunnel.
Merry Christmas to all!
Take care and Live Strong!!
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