Back on track for a SCT

[Data]

After a little scare and delay because of a possible reoccurrence of prostate cancer I am back on track for a stem cell transplant. My new admit date is 29 March 2016. I wasn't real happy that it is a month away but evidently that is the best the donor could do. They have already told me he is a 20 year old male with O Negative blood (I have O Positive).

At my last doctor's visit I found out I have several gene mutations (TP53, TET2, TET1, PMS2, PML, MSH6, FLT3, EZH2, DNMT3L, DNMT1, and ASXL1). I also had monosomy 7 in 10 out of the 20 cells analyzed in the last biopsy. My doctor said given all of this he puts my success chances at 30% and a median survival time of 3 years if the transplant is successful.

Wishing everyone else the best in their individual journeys.

Cheers

Data

[Neil Cuadra]

Data,

I hope the doctor is purposely underestimating those numbers to avoid over-promising.

Hooray for your donor. Blood type isn't that important, but a good HLA match is. I hope he's an excellent match for you.

[Data]

Originally Posted by Neil Cuadra

Data,

I hope the doctor is purposely underestimating those numbers to avoid over-promising.

Hooray for your donor. Blood type isn't that important, but a good HLA match is. I hope he's an excellent match for you.

Neil,
I had done quite a bit of research before I saw my doctor and expected exactly what he told me. I have seen multiple studies that are essentially the same as what he predicts. I think if it were just me in the picture I might not choose the transplant. I might get one last bike (a Goldwing) and make one last ride. I have to consider other people in my decision and have come to terms with the facts.

Cheers

Data

[rar]

It may be a different interpretation. The data I saw says that with MDS RAEB2 with a transplant the mean 3 year survival rate is ~30%. But if you make it to the 3 year point with no remission you are probably cured and then have a near normal life expectancy. I am half way there. I am voting for the less gloomy interpretation.

I wish you success.

Ray

[PaulS]

Hi Data - The statistics for transplant success, even under the best of circumstances, are daunting. For sure, you have a lot going against you that is out of your control - what's important at this point is recognizing what is within your control to help you end up on the right side of the curve - From my experience, and perhaps the best advice I had going in - was to believe you will be able to overcome any setback - believe you will be cured. Attitude is important - replace fear with determination and faith. The mind plays a big role in our health and recovery.

There are other things you can do to improve your odds - make sure you keep moving, exercise as much as you can - keep eating, keep hydrated, wash your hands and teeth, and maintain a clean environment before, take precautions, limit guest visits etc - during and after transplant - People die who stay in bed, don't eat, get infections - That won't be you.

Also - keep an attitude of determination, gratitude and love - a positive attitude greatly improves your ability to heal and overcome - you are loved and have a lot to live for - that too improves your odds - people are more likely to die if their angry, alone and filled with despair. That's not you.

Last bit of unsolicited advice - keep a goal - you don't want to go on one last bike ride - you want to be strong and go on many bike rides after you are cured. I'd set a goal for a good bike ride six months post transplant - start training for it as soon as you get in the hospital - make it an ambitious goal.

I told everyone my goal was to be skiing in Colorado in March - I told my transplant doctor and he said maybe next year - I said, no this March. I started walking and exercising upon admission and as much as I could during my stay - Inspired by Bailie, I ended up walking five miles around the hallway - but started with getting out of bed - breathing and moving my legs around. PT would come in to assess me and ask if I could stand up - I stood up and said the goal is to be skiing in March - then tried to out walk them in the hall - yes I'm very competitive - I believe this attitude helped keep me going, moving and positively focussed - and helped manage my health care providers expectations - even when things weren't so good - and there will be those times. While I am far from being able to declare myself cured - and I do have moments of despair - I feel that outcome is still within my grasp.

Don't let the odds scare you - believe you will be the guy who will be cured - really cured. Let your doctor know your expectations - odds are bad doc - but I'm gonna be the guy on the far side of the curve. Replace fear with determination and faith.

To paraphrase my transplant doctor - you are doing this so you can live - not just to keep you alive.

So - I'm expecting to hear about your epic bike ride sometime late summer.

All the best,
P.

[bailie]

Very good Paul. I agree that the best way to confront this disease is head on. You do everything you can to control things that are possible to control. It becomes a challenge for the competitive spirit. The most interesting part of this is that it is like putting a puzzle together and then realizing that you are the puzzle. I have felt the need to be a very active part of the solution. Knowledge is so important.

[PaulS]

Hi Bailie - I hadn't seen you post for a while and was starting to worry - how's it going?

You've been a very good teacher - you have given me some instrumental advice and perspective - I'm very thankful for that.

Rar - I share you're interpretation of the data - my understanding is if one gets past the first year the odds mare markedly improved - and start and after two years almost the same as five years - after which a relapse is very unlikely - I'm going with that for what its worth. How are you doing now?

Best,
Paul

[bailie]

Paul, I am having an interesting experience. About four months ago I developed a dry cough. They took a chest x-ray and told me I had pneumonia. It was strange, no fever and didn't feel too badly. I was given ten days of antibiotics and was feeling fine afterwards. Then I had my 16th bone marrow biopsy which was no problem. They tested several things. Still 100 percent donor, no mutations and no leukemia. The doctors referred to me as being "weird" (in a good way). About a week after that I started feeling weak, short of breath and couldn't walk more than about five blocks, but no pain. I had more x-rays, three echocardiograms,EKGs and a CAT scan. I had fluid around my heart (pericardial effusion). That was diagnosed as tamponade which can get your attention. They put me on diuretics and I lost 9 lbs. in a week. After about 15 days on the diuretics I was feeling fine and walking a fast mile again with no problems. I am feeling as well now as about any time since the transplant and ready to start golfing again (we have had a record rainfall winter). We still aren't sure what caused the heart/lung problems so that is what we'll be working on. I have no complaints about this and it has been interesting. I am at about Day 575 and have had it pretty easy. Can't think of any pain since the transplant and I am appreciative.

[PaulS]

Hi - great news about the marrow - are you still taking Vidaza? Pentamidine? (they give me this to prevent some kind of pneumonia. The heart thing is strange - do they know what caused it? Could that also have been some kind of infection? Do they think it was related to transplant? Funny concept having some kind of illness completely unrelated to marrow or transplant...

Hope you keep doing well and get back on the golf course soon.

Best,
Paul

[bailie]

Yes, I am on a 7 day/28 day Vidaza cycle. I have finished my 9th cycle since relapse at Day 210. I handle it pretty well. I haven't had any fever since transplant except a couple of days at 99.6 degrees.

They think the pneumonia could have been a "byproduct" of the Sprycel I was taking for the "Philadelphia Chromosome, 9;22" or perhaps some dust that I was exposed. A fungal infection has been ruled out and without a fever any other infection has been ruled out. Blood tests have remained as expected. I always drop to about 50 for platelets at about 10-12 days after Vidaza, then they bounce back to about 200+ before the next cycle. It has been very predictable.

It is strange how things come from different directions after transplant. You just deal with them as another piece of the puzzle and work toward completion.

I don't want to take away from Data on this thread. I wish him the very best to remain as patient as possible during this process.

[rar]

Paul, When diagnosed the odds were 4% that with out a transplant I would live 3 years and still have MDS. 30% odds that with a transplant that I would be cured in 3 years. At a year and a half most of my CBC are in range, the rest are close. Doctor thinks the odds of relapse are very small and "it is nice to see a success story for a change". The road to recovery was full of potholes but I don't give up. Currently I have mild to moderate GVHD of eyes and mouth so I am still indefinitely on my transplant medications. I exercise 45 minutes a day 7 days a week. For what I have been through I feel like I am cured and in excellent condition with a few minor problems.

Thanks for inquiring.

Ray

[Cheryl C]

Great news, Data. All the very best as you prepare for transplant. Will be watching for your posts!

[DanGrant]

Data,
My advice is to get ready for the surgery. During the early stages after your transplant you’ll be at increased risk of developing an infection because you’ll have a low number of white blood cells. When your white blood cell count drops below 1.0, you’ll need to be in a germ-free environment – called protective isolation. The main thing you should focus is the post op steps you will be taken. Discuss with your doctor and be sure that all of that is taken care of. I wish you fast recovery.
Regards,
Dan

[bailie]

Dan, what "surgery" are you referring? I was never advised of any surgery to expect. Are you referring to some other kind of transplant?

[DanL]

Data,

I am sorry for the scare and delay, but am very glad that you are able to move forward at this time. As with Neil, I am hoping that the doctor is underestimating the odds but as you utilize the nonmenclature of data, you already know the value of what I am going to share......Odds are aggregate, success and failure are individual. I went in with grade 2-3 myelofibrosis, 16% peripheral blasts, very high ldh, trisomy 8 in 20 of 20- cells and was failing Vidaza treatment. I knew that I had to win and that my doctors were going to help me win. 6 months after transplant, I relapsed - a very bad sign with MDS, w treated with Vidaza for 6 more months and then stopped. I have had several bouts of cGVHD as well as avascular necrosis. Even as recently as Novemeber I lost 20 pounds in a month. I just had surgery to replace my left hip, I have the best blood counts I have had in over 7 years, and my energy level is growing by the day. I know that I will win with the help of my doctors, and you will as well. I believe. The odds are yours to manipulate and use in the way you want ----- be the 30% on the right side of the equation and give yourself the best odds every day by complying with doctors' orders, staying in good shape, avoiding infections, and moving every day, regardless of the difficulties. Oh, I forgot to mention - I am one year post Vidaza, no evidence of any cancer cells, no mds, cells, no abnormal cells in the marrow nor the periphery, cGVHD is at a minimum. I have 200k platelets. 6.5 WBC, and a 13.4 HGB - which is the best it has been in at least 7 years........victory is yours to seize.

[PaulS]

DanL and Bailie - you both continue to inspire me - I'm glad, despite the setbacks you are both positive and doing well.

Data - No doubt stories of relapse, GVHD and such, while inspiring, can also be a bit scary - I'm very mindful that I'm near the time post transplant when DanL and Bailie relapsed.

There are plenty of other scary stories on this board and others - but there are also some very good outcomes who aren't necessarily posting ten years post transplant - There's always Robin Roberts for inspiration - perhaps you noticed how buff and energetic she was on the Oscars?

Going into transplant there is a lot to fear - but try and push the fear away and focus on the best results that could and will happen to you. Believe you will end up cured - and believe you will overcome the bumps along the way. We're all rooting for you!

Best,
P.

[marmab]

I'm not sure that I can add much to the excellent advice and encouragement everyone else here has given. We are all rooting for you. Going into my transplant, the statistics were that I had a 63% chance of living a year, and a 50% chance of surviving two. I am approaching the two-year mark (in July) and doing great. There were definitely a few scary bumps along the way, but I survived -- and thrived. My lab results from last week were the best I've had in years. As others have said, try to keep in shape and avoid infection. I did a good job of staying in shape, but I wasn't so vigilant about infection, and I did get a nasty one a few months after transplant. Thankfully I recovered, but nonetheless I will have to take Bactrim for the rest of my life (probably), for precautionary prophylaxis.

Hang in there. You are in my thoughts.

[GoodDay5150]

My advice is to be concerned but not worried about what can go wrong. Trust in your medical staff, friends and family, and your faith if that's your thing. My experience was not that bad, and I honestly did not do very much research about transplants and my disease until after my transplant. I was so sick for so long I was looking forward to my transplant. And remember that we are all here to help you along.


Mario