[DallasGG]

Newly diagnosed 6/20/2013

by DallasGG on Thu Jul 04, 2013 12:24 pm

Hi all. I'm a 56 year old athletic male and I'm just getting over the shock of being diagnosed with multiple myeloma a couple of weeks ago. I really had no symptoms other than mild tingling/neuropathy in my feet but thought that might be caused by my long bike rides. I had no idea that anything was wrong when all of this started.

About 6 weeks ago I had a routine annual physical exam and my blood levels (HGB) were slightly low. My primary care physician did a couple more tests including reticulocyte count and they came back abnormal. He referred me to a hemotologist/oncologist who looked at my slightly lower than normal blood counts and didn't even think I should be tested further but decided to do a blood test just to double check things. My blood levels were slightly lower than before (HGB=10.2, RBC=3.21) so he decided to run more tests. My Monoclonal protein level came back as 4.0. He said I probably had multiple myeloma based on that but confirmed it with a bone marrow biopsy where he said the I had 80% infection (not sure what the technical term for this is). Anyway, he suggested based on those tests and my anemia that I start treatment on 7/8/13 with Revlimid, decadron and Velcade. I understand that this is a fairly standard first course of treatment. Is that correct? I'm trying to look for some good news in this and that is that my skeletal xray came back with no bone damage and my kidneys are functioning normally. Is there any evidence that having caught this early with no bone or kidney damage that my prognosis might be slightly better? Or does it basically come down to how well I respond to treatment? (I'm guessing my response to treatment is the main thing to look at.)

Any suggestions for a new patient would be appreciated.

[Ron Harvot]

Re: Newly diagnosed 6/20/2013

by Ron Harvot on Thu Jul 04, 2013 2:38 pm

When I read your post I could not help but notice the parallels to my diagnosis. I am also a avid cyclist and was diagnosed after my annual physical blood work and urinalysis showed excess protein. I was diagnosed with stage two light chain myeloma as I have never had an M spike. I too started on VRD. I reached a CR within 5 months and have never had a stem cell transplant. I am on maintenance dosage now with a Velcade shot once every two weeks accompanied by 8 mg of Dex. I have been in remission for 4 years and have actually picked up my bike riding since my diagnosis. There is post about biking I started and you can find it by doing a search. I will be competing next week in a 2 man 12 hour team time trial in Waco Texas. Temps will be in the low 100s. My partner and I will alternate laps on a 24 mile course and see how many miles we can cover in 12 hours. I just finished a 70 mile training ride this morning in preparation for the race.

I work full time as well. So if the VRD works, and you will know very quickly, then it is possible for you to lead a relatively normal active life. That has been my experience. I have had some set backs as this disease manifests itself in a variety of ways. Many people have had much worse experiences and there is no "common" ground that I can see. But the main thing is that with the new novel agents a large percentage of people are getting very good lasting results.

Keep the faith and keep biking.

Ron

[DallasGG]

Re: Newly diagnosed 6/20/2013

by DallasGG on Thu Jul 04, 2013 11:59 pm

Ron, thanks for passing on your experience with multiple myeloma. It gives me hope that I can continue to workout and exercise in the future. You're much more of a hard core biker compared to me. I was biking about 15 miles 3-4 times a week when all of this started. For me, it's more of a good aerobic workout to go along with swimming and weights. Anyway, I'm impressed that you can go on 70 mile bike rides, especially in the Texas heat!

My journey with multiple myeloma has just started but I hope it goes as well as yours has so far. It gives me hope when I hear a story like yours. Good luck with your ride in Waco!