Six Month Update

[PaulS]

Hi Forum -

It's been a little over six months since my transplant for MDS and figured it was time for an update - I hope my experiences are useful for those undergoing or contemplating a transplant - and I thank the forum for much great advice and encouragement. I'll summarize briefly -

After nearly three years of watching and waiting - I became transfusion dependent - EPO didn't work - Vidaza didn't work - My Hgb would drop into the 7's without a transfusion - and got as low as 5 - platelets also started dropping - especially after Vidaza - but they were low before. Finally blasts started showing up in the marrow - maybe as high as 8% but probably much lower - a troubling mutation also showed up in my cytogenetics - although it disappeared in a BMB closer to transplant. At that point we decided it was time to transplant. A MUD was found and the transplant process started.

Pre-transplant screening showed some coronary artery disease and pulmonary hypertension - the former was addressed with a stent - the later was likely associated with a build up of fluids due to frequent transfusions -

As a result of the heart issues - they did non-myloablative conditioning w/o TCell depletion - Chemo and transplant were going smoothly when I got an infection in the hospital - ended up a couple of scary days in the ICU but recovered fairly quickly - from that point on it was a lot of waiting for my counts to go up - which took a very long time. Five weeks in the hospital and I finally left for an apartment near the transplant center - Counts took a long time to rise - and around 100 days GVHD showed up with a rash all over my body - and itchy red, swollen face. Mega dose of prednisone cleared it up somewhat - stopped the itching - but created a new set of problems - high blood pressure, diabetes, wasting muscles - Reached a stalemate - GVHD stable but not gone, counts still low (platelets 20's), taking too much prednisone -

Next tried Rituxin to get rid of the GVHD - four cycles and it worked! GVHD mostly gone - and they began to wean me from prednisone - counts started to rise. During this time - maybe 3-4 months - I was getting frequent RBC transfusions and occasional platelets - as well as IVIG. Had my central catheter in all that time - very unpleasant.

Finally the counts started to rise - didn't need transfusions, started to wean from prednisone and mychophenolate - lost the catheter - which made a huge difference in the quality of life and ability to exercise.

In February - around five months - my BMB showed 100% donor and no sign of disease or cytogenetic abnormalities - big milestone and very exciting news. My pulmonary hypertension disappeared. Counts continued to rise Platelets got to 75, WBC normal Hgb creeping up over 11 -- as a result I was able to achieve my goal going into transplant - going skiing in Colorado - I boarded the plane six months to the day post transplant - and slowly got back into skiing - a sport I love - Started slow - but by my seventh day of skiing bumps and really doing pretty well - felt great - almost normal. Sometimes I didn't think about my transplant at all.

I'm back from Colorado and my HgB is 13.5 - the first time I've hit normal in maybe five years! Platelets still low - in the 60's last time. My liver enzymes are slightly elevated and I have residual GVHD on my skin - little freckles and a red face - not too bad but as a result we are weaning from prednisone and MMF slowly - I'll probably be on tachrilimus for a while - but my goal is to be free from all those drugs eventually. I also need IVIG as my IG levels are all low. I'm gradually getting stronger and regaining my energy.

The transplant experience has been remarkable - I'm so grateful and humbled by the kindness and grace I have received - starting with my amazing donor - my awesome doctors, nurses and other health care providers - and especially my wife and family - People on this Board have also been very helpful and supportive - I especially miss Tracey as I write this - and am thinking of Data as he starts his transplant journey. Overall, I feel very blessed and grateful.

I still have a long journey ahead of me -

For those contemplating transplants now - there are a lot of scary stories out there - but a lot of positive ones too. Focus on the positive ones. Some lessons learned - Stay positive and stay grateful - attitude is very important. Don't be afraid, we all die sometime and we don't really control when or how, fear just gets in the way. There is power in faith and prayer. Keep moving. Enjoy taking showers.

Thanks again to everyone on the forum who have been rooting for me and offering great advise and insight.

Best to everyone
Paul

[bailie]

Paul, as always I/we appreciate the detail of your experiences. Your progress is encouraging for everyone.

You (or anyone) mention your doctors. How many are involved? I have one primary transplant doctor who I still see about once a month. In addition, one FNP for BMBs and check-ups and the nursing staff for labs and Vidaza. That is about it except when something irregular happens. I have heard some talk about a "team" of doctors. I have not seen a "team".

[PaulS]

Hi Bailie - I have my hematologist - who managed my case until transplant - got me to the transplant doctor and also to my cardiologist - she still follows me and is totally awesome - my transplant team consisted of my transplant doctor, his PA - and several doctors, fellows and PA's who rotated every couple of weeks on the transplant unit - there was also my local hematologist who worked with my main hematologist to get me transfusions an Vidaza locally - also the team of nurses in the local infusion center who were also all wonderful. -- also the nurses and assistants on the transplant unit - who were all great - and the cardiologist at the cancer center who watched my heart through the last six months. After I was discharged I went to a transplant day hospital for about four months where I got transfusions, Ritixuin etc - I saw my doctor there as well as a special group of PA's and nurses. That was pretty much my medical "team." I feel really fortunate to have had such great people taking care of me.

At this point I see my transplant doctor or his PA - every couple of weeks and will start seeing a "survivorship" PA -- and I will likely see all of them for a while - hopefully with decreasing frequency There is some discussion of doing Vidaza as a maintenance program - and maybe Jadenu to chelate iron associated with numerous transfusions - my hematologist will be in on those decisions - and I expect to start seeing her again at some point - I also will start seeing my cardiologist at some point rather than the one at the cancer center. I haven't seen a primary care doctor since I was diagnosed.

How are you doing?

[DanL]

Paul,

Way to go! Thank you for the 6 month update. The forums can always benefit from success stories given the overwhelming nature of transplant. It is really good to see that you are doing well and back to enjoying life!

[bailie]

Paul, actually my "team" is very similar to your description. You were just better at describing than I was. I have heard some people describe their transplant "team" as a group of doctors, which I don't have. I also have a local hematologist/oncologist doctor who initially diagnosed my MDS and sent me straight to my transplant doctor at Oregon Health Science University. I see my local doctor and nurses for the Vidaza treatments. I have seen a cardiac/oncologist doctor once when I developed fluid around my heart which they think was a side effect from Sprycel (for the 9;22 "Philadelphia chromosome") that came with my AML relapse at about Day+210. I still haven't had a fever more than 99.6 (which lasted less than a day) since I was diagnosed.

I am doing/feeling great for now (Day+590). I golfed 18 holes this last week and plan to continue once a week for the rest of the summer. My BMBs have been perfectly clean for the last six months. It is a strange sensation to talk about that because we all know that things can change. I read the link that Kyis posted last week in which a doctor described our recovery as like the game "Whack-a-Mole" where you just get rid of one problem and another one might pop up.

I will have one more round of Vidaza (my 12th since relapse) and then my 17th BMB. We will then evaluate my situation. The last six cycles of Vidaza have been for prevention of relapse and hope (wishful thinking) of a durable remission. I have felt pretty good the last six months except for a couple of colds and the related fluid around my heart which slowed me down for a couple of weeks. I feel very close to "normal" which my good friends tell me is impossible because as they say I "have never been "normal".

Dan, it is always good to hear from you.

Everyone have the best day possible.

[vickij]

Always glad to see your posts. I am almost 3 yrs post SCT and I have been doing good. I feel very lucky that I have had very few problems. My biggest problems are still no energy and depression. I also have chemo brain that affects my memory and thinking. ( I like to blame it on chemo brain instead of old age ) I see my transplant Dr. every 6 mo. he said after 2 yrs there is very small chance of relapse. I go every month to oncologist for phlebotomy to help get rid of excess iron from all the blood transfusions. I also take jadenu. I hope you continue to do great on your transplant journey.

[PaulS]

Hi Vicki - glad you're doing well. I'm surprised you're iron levels are still high so long after transplant - i assume its been years since your last transfusion? I was hoping my iron levels just would clear up over time - not looking forward to taking jadenu - Are they treating the depression? I find this entire experience a bit exhausting and at times scary and depressing - I'm hoping that all gets better with time - or at least with increased physical activity. I was much more tired and depressed before the transplant. I hope you feel better in that regard.

Bailie - You are truly inspirational - but golf only once a week?

P.

[vickij]

I had to have transfusions every 2 or 3 weeks for the first year after transplant until my blood type changed to donors type. I have been taking jadenu for about 6 months with no problems. I have a new family Dr. and have started a new anti depressant .