[RayGunter]

New to the forum

by RayGunter on Tue Apr 09, 2013 7:03 pm

Hi all -

Just sharing my story.

In the summer of 2011 I started having really bad shortness of breath. I was 38, a little overweight, but I worked out somewhat regularly. I'd go to the gym and start feeling really tired after like 5 minutes. It progressed to where I'd go for a walk and make it a half mile before I had to stop and rest. Finally went to my cardiologist and told him about it. I had been seeing him for high blood pressure for awhile. He did an EKG and sent me to the ER for a suspected heart attack. Freaked me out a bunch since I was pretty sure I didn't have one, but obviously something was wrong.

After a weekend in the ER and about 1000 tests, they suspected multiple myeloma but couldn't exactly explain the shortness of breath. One of the tests was a chest CT which revealed bone lesios all over my spine and rib cage. Had biopsy following week and then got the results a week later which confirmed it all. They also did a congo stain as they suspected the shortness of breath was caused by amyloidosis. Everything came back positive and they went right into describing the treatment. It all just blew me away.

My shortness of breath continued and we started RVD treatment. Lots of bad side effects from it all. After another trip to the ER for breathing issues they confirmed the amyloid in my heart and my GI tract. Put me on low salt diet and that REALLY helped with the breathing. The salt made me retain fluids and caused my heart to work extra hard to make me breath. So the diet change and chemo seemed to really be helping things. I went from about 250 pounds to about 200 in a matter of 3-4 months.

My RVD lasted for 16 weeks and worked pretty effectively. In Jan 2012, they harvested and in Feb I had my first SCT. I got a lower dose of the melphalan (140 instead of 200) and it went about as smooth as you could hope for. 2nd SCT was in June and went even smoother. The lower dose chemo was because of the amyloid and heart issues. They didn't want to give me too much and kill me.

I recovered pretty quick and am doing really well now. My doctor has me on monthly maintenance of subQ Velcade which I've tolerated pretty well. We will add in Zometa and a steroid soon. Haven't been able to add those yet because I've had some dental problems and those drugs don't mix well with dental problems.

It's been a crazy year and a half. I got hit with a fairly rare cancer, even rarer for someone 38 years old to get and then I got the even rarer complication of the Amyloidosis.

I love my doctor - Jayesh Mehta at Northwestern. He has been aggressive with me due to my age and the amyloid and he explains things really well. We are on the same page with everything.

All tests now say I'm in complete remission. My life has gone back to almost complete normal. I do still get the poison every month and take a bunch of pills every day. The only lasting effects of the chemo has been neuropathy in my feet.

Now I'm not sure what happens next. That's the million dollar question I guess. I have my 3-4 month checkups where they re-do all the tests. Scares the crap out of me as I wait...has it come back? What will happen when it does?

I like to think of myself as a success story. You hear so many bad tales from people. I went from someone who never really shared anything to someone who shares everything now. If anyone ever wants to talk about anything, feel free to contact me. I found it really helps.

-Ray

[dishevelled]

Re: New to the forum

by dishevelled on Wed Apr 10, 2013 1:43 am

Wow you went through a lot in a short period. I was just diagnosed 1 week ago and I am 36. I have to meet with the specialist next week. From reading your post, I'm thinking maybe I should let my doctor know about the chest pain and fluttering I have almost daily for 6 months . Right now I am confused as to which symptoms I have are due to the disease and which are from something else. I just found out I don't have any CRAB symptoms yet but I have a lot of back, hip, rib pain and shooting pains down my legs. It is really comforting seeing all you went through and now you feel close to normal. I am here to talk but I am only learning about everything. Hope your remission lasts, and lasts.