Possible Relapse

[DanL]

Due to dropping blood counts, my doctor performed a biopsy at about day 150 instead of the normal 180. 1 of the 21 cells karyotyped had a few different chromosomal problems - +4, +8, +12, +19, +20 I think. The other cells were normal, but as it would appear, this means either that these were missed in prior biopsies due to sampling, or that the MDS clone has returned. I still have GVHD which we are treating, and will begin photopheresis next week to work on the GVHD while weaning me off of prednisone.

I started with Vidaza on 8/18 and will probably be on it for some time. At this point, we are not looking at DLI or re-transplant as I don't have any marrow blasts, there is tri-lineage maturation without dyspoeisis, but there is the chromosome damage. the hope is that the vidaza will give my donor's marrow enough of a boost to enhance the graft versus mds effect. I am still showing 100% donor in the marrow and peripheral blood.

I view this as a bump in the road and feel fortunate that we may have caught this relapse really early in the process.

[Whizbang]

Dan,

Keep your spirits up (stay positive), this to shall pass... Hope they can find the right mix to get you back on track, which I'm sure they will...

Too early to say relapse, just a bump in the road that needs adjusting...

All the Best, and May God Bless...

[Cheryl C]

I like your positive spirit, DanL. Thinking of you and all the other forum members who are battling post-transplant issues.

[katgio50]

Good luck Dan. My husband is also taking Vidaza due to relapse. He was still 100% donor in the marrow, but not the blood and he had 5-8% blasts. He is having a hard time with his counts, but we are hopeful the Vidaza will work.

[DanL]

Today was my 1 year re-birthday. I almost forgot entirely to celebrate, but did make it out to dinner tonight.

Since the last update about possible relapse, I have completed 6 cycles of Vidaza, and 3 days of anti-gvhd treatement with Rituxan, as well as a bunch of other drug changes from tacrolimus, sirolimus, prednisone and hydrocortisone. The good news is that I have had two biopsies since August that have come back with normal cytogenetics, normal blast population, and steadier blood counts. I have remained transfusion independent since leaving the hospital.

My current regimen includes photopheresis, lower dose steroids, tacrolimus, and Rituxan. We are working on reducing immune suppression overall, which is what the Rituxan is all about. Overall, doing pretty well with all of the changes. Some of the predictable issues - I think that I have avascular necrosis once again and will be going in to see the orthopedic surgeon again tomorrow. This is probably the result of corticosteroid use, but the option is GVHD that can run out of control - hips are easier to replace than rampant GVHD is to cure, so a little pain and potential surgery in the future are acceptable.

The photopheresis along with the prednisone and Rituxan seem to be doing a nice job of eliminating skin and gut GVHD as my symptoms have improved. For the first time in a long time, my arms, face and neck have normal color to them - it does not look like I have been exposed to the heat lamps for too many hours - good progress. The doctor has been working to get me away from prednisone for some time and we have begun yet another taper. My body has held up well in terms of liver enzymes, kidney functions, and chemistries, but long-term toxicity is always the concern.

As Bailie has said in the past, if I had to do this over again, I would. It has been the right decision for me, and I still believe strongly in the team of doctors that I have, that the outcome will be the best that was available, and that despite the bumps in the road, that transplant was my best option. I won't say that any of it has been easy or that it is a smooth road, but a road without bumps seems boring.

Thank you all for being available on the forums for the past several years of this journey. I look forward to hearing more success from all of you in the coming year.

[JordanN]

Dear DanL,

Congratulations on your one year re-birthday! I'm so happy to hear that you are doing well and having success with treating the many issues that you have had to fight post-transplant! It is wonderful that you feel so strongly that you made the right treatment decisions for you - I think that can make it easier to endure the bumps and hurdles when you truly believe you did what was best for you!

When my dad was first diagnosed with MDS, I was upset that he was not eligible for a transplant as he was a very active 80 year old with no other medical issues, and it seemed as though he might do as well as patients who are younger. However, after seeing how much low-dose Vidaza affected him and hearing about all the realities of the transplant process, I am glad he did not have to make the choice to try a transplant. I think it would have made things much harder (or worse) for him. I truly admire all of you that have had to make that very scary choice of trying a transplant with all of its risks and long-term issues or living with a disease that can turn on you at any moment. You and all the other on this forum are incredibly courageous people!

So, congratulations and here's to many more happy re-birthdays for you to enjoy!

[SLB]

Happy re-birthday Dan! Sounds like you have had a busy year! Glad things are looking up and all your counts are good. Keep fighting the good fight... Congrats.

[bailie]

Dan, that's great! I was thinking you were getting close. Looking forward to seeing Year #2 for you.

[PaulS]

Congratulations - hope the road gets smoother.

[Cheryl C]

Wonderful news Dan - so glad to read that things are improving and that you are finding that in spite the difficult patches it's all been worthwhile.

[Bhutt]

Happy first birthday. Wishing you continued success with everything.

Blair