1 year post-relapse update
 

I just wanted to provide an update on my progress. I received my bone marrow transplant on February 26, 2014. Although engraftment was solid, chimerism was 100% donor and my energy was pretty good, my recovery was not strong in terms of blood counts. I did not have any blasts or other truly negative indicators, but something wasn't right.

On August 13th, my wife's birthday, I got a phone call from the doctor indicating that my latest biopsy showed evidence of relapse. There was only one cell out of 21 that showed relapse, but it was enough to be an issue. I did not have excess blasts. The one cell had trisomy 8, 19, and 22 as well as -1q, so it met the criteria of complex cytogenetics. My cellularity was also very patchy and ranged from 5% to 60%. Chimerism was still 100% donor. I met with the doctor shortly thereafter and we decided to put me through 6 cycles of vidaza for the relapse and 6 cycles of rituxan for gvhd. We were trying to utilize steroid sparing anti-gvhd treatments as I had developed avascular necrosis.

My November 2014 biopsy showed no evidence of MDS, no blasts, no trisomies, no excess blasts. This was one biopsy down, I was hoping to continue with clean biopsies. The following months, I experienced many hospitalizations - the result of my avascular necrosis for pain management. I had pneumonia with 80% of my lungs involved, I had 3 bouts of cellulosis in my feet, 2 requiring hospitalization, and then I spent about another month in the hospital for undetermined GI symptoms. All told, I spent about 100 days in the hospital.

This month, I received the results of my November biopsy - I now have 1 year of clean biopsies - no cytogenetic issues, no excess blasts, 100% donor cells, 55-60% cellularity in the marrow. My peripheral blood counts have finally recovered - 235k platelets, 8.5 WBC, HGB hovering between 9 and 10. I would not say that I am out into the clear just yet as 2 years seems to be a pretty good number for MDS, but 1 year without relapse feels pretty good. I am expecting to get my left hip replaced within the next month, right one a few months after that. I am hoping to see my recovery accelerate in the next months.

Although this has been a bumpy road, I am still very encouraged and hope to have a full recovery over the next couple of years.

I am also wishing all members of this forum good health and success with their respective treatment plans.

Hi - Thanks for posting your update - great news about the November biopsy!!

Bumpy road indeed - hopefully you're near the end of the rough patches and it will be autobahn the rest of the way - I admire your great spirit and perseverance.

I have a friend who had a hip replacement and is doing great - enabled him to be much more physically active, as he had been before he developed hip problems - the surgery really changed his life - so hopefully that will help you too.

How's the GVHD now - has it improved/improving?

There is some talk about giving me a maintenance round(s) of a low dose of Vidaza after about six months from my transplant - not sure for how long - but perhaps your Vidaza treatment served the same purpose - of knocking out any residual disease that tried to resurface.

All the best for a great Christmas and a very healthy 2016.
Paul

Sounds very promising Dan. Your situation is so meaningful for me since I am about six months behind you. Thank you. My experience is similar, but I haven't had the problems of GVHD. I did have a pretty serious relapse that is still to play out. With both of us it seems that the Vidaza has been very influential in our progress. Your CBC numbers are considerably better than mine. The Vidaza and dasatinib (Sprycel) has kept my numbers in the low range. My platelets (240) and HGB (11.0) have been fine. The 100 percent chimerism is comforting. Your experience and determination are very encouraging. I have completed my 7th Vidaza cycle post relapse with the last three BMBs being perfectly clean.

I wish you the best for your upcoming surgeries. As Paul said, I have heard nothing but great successes concerning the hip replacements.

Hi Dan, thanks for the update. I am close to 4 yrs post trans for PNH. I was wondering if your avascular necrosis is related to your MDS and treatment, or is it unrelated. No relapse or serious issues for me post trans, only some photo treatments and meds for GVHD. A long, lengthy, and very involved process that I would do all over again. I was sick and tired of being sick and tired!!

Mario

Mario, were all numbers on a continuous upswing? Was your chimerism always at 100 percent? Are you still experiencing being tired or is your energy level good?

Hi Bailie. I believe that my chimerisms were at 100% when they did my 1st bmb after my transplant. Yes, my #'s went to normal in a fairly short amount of time. I never had any blood other than when I was in the hospital and I never had any meds to increase my white count. I did have photo treatments and meds for GVHD. I was taking Nilotinib which is usually used for leukemia, but dr's have found that it can also be used for GVHD. My energy level is mostly good, but I had PNH symptoms for so long, I forgot how normal should feel. I thought that my fatigue was because I was low on testosterone, and a GP who did a blood test found my hemoglobin at 7.4! So by that time in 2011, I prob had PNH for 8-10 yrs.

Thanks for the update Dan! Good to hear that you are doing well and got good news. As Paul already said, we admire your spirit and perseverance. Good luck on the hip replacement.

Tracey

Great update
 

Very happy for you