Day +483 status update

[DanL]

I have been a little remiss in posting updates except as part of other threads, so I thought that I would send out my progress report and see how other people who have gone through transplant in the last couple of years are doing.

At day +483, I have the good news of being able to say that I am still making progress. The biopsy that we completed in late May came back clear of blast cells, mds cells, abnormal clones, etc. This represents 6 months of good biopsies since we detected some relapse back in August of 2014. To get there, I went through 6 cycles of Vidaza to help along the new system.

I have been working with mild-chronic GVHD and have been on steroids, tacrolimus, photopheresis, IVIG, and a few cycles of Rituxan. I still have cGVHD and it flares from time to time, but overall has been pretty manageable. Primary impacted areas are my skin - i have two red zones - my head and arms - and then some recurring folliculitis, my mouth and GI tract, which we control with dexamethasone and budesonide as needed, and then my eyes, which we treat with some really expensive eye drops a couple of days a week.

Some of the other issues that have popped up include acquiring drug-induced type 2 diabetes that I am finally getting control of, edema in the feet and lower legs, some neuropathy which is resolving, and the one that we are working on currently - avascular necrosis of the hips. The avascular necrosis is not new - i had a bout with it back in 2010 where the pain subsided, but between the chemo and steroids, it was bound to come back.

The plan - I have been doing some pain management for the avascular necrosis for the past 4 months, but my left side does continue to deteriorate, so I am electing to go in for hip replacement sometime in the next month, pending doctor approval of course.

I think that one of the questions that comes up for me and for others is - what are your blood counts - is everything normal? The answer - they are good enough for a lot of things in life, but they are not normal. Since transplant, I have been very fortunate not to require a single transfusion, no injections of neupogen and have been pretty stable. My hemoglobin hangs out somewhere between 9.9 and 11, white blood cells (Vidaza cycles aside) hang out in the 2500-5000 range generally - I have a lower lymphocyte count due to the Rituxan rounds - that will probably persist for another few months, and my platelets, bane of my existence, have come up to be in the 80k-130k range over the past couple of months - numbers I haven't seen since before diagnosis in 2010.

Again, the purpose of the update is to share some of the experiences that I have been through and the ongoing decision making, complications, changes in plans that seem to happen post-transplant. Every day I am glad that I was fortunate enough to have a donor, to be able to get the transplant, and to be here again today. The complications I have experienced I view as speed bumps. Need to slow down a bit, but there is plenty of open road ahead.

My hope is that anyone experiencing difficulties or doubts through the BMT and post-BMT process stays positive, encouraged, strengthened, and empowered by every day that they beat MDS or any of the other blood disorders.

[traceyn11]

Glad to see the update Dan! Also glad to see how positive you are given your "speed bumps" and that you are making progress.

I appreciate seeing posts like yours of what can happen post transplant so I know what to expect, but still see that you are so positive!

I hope the hip replacement surgery goes well and takes care of that issue.

Sending you prayers and positive thoughts.

Tracey

[bailie]

Thank you Dan. I am at Day +313 so it it interesting to hear your situation. Where do you think we are at in the grand scheme? I have quite a few studies that paint a not so good picture following relapse after a SCT. I relapsed for about a month before the Vidaza brought my counts back to normal. I get the idea that we are at the mercy of how long the Vidaza is effective. I'm not sure if the "cure" is still in the picture? It is my impression that it would be a real longshot (the cure) at this time.

I have had very minor (a couple of weeks of rash, Day 80) GVHD of the skin and that is all. My problem mostly is that I am tired, but still functional most of the time. I sleep about 10-11 hrs. and often take 2 hour naps. I would not have a problem if my health stabilized at this level. My medications are at the lowest level since SCT. I am taking Acyclovir, posaconazole, sprycel and Sulfamethoxazole-Trimethoprim. I went golfing today, but walking the six mile course is out of the picture so I spend much of the time riding in the golf cart.

What does your doctor say about the Vidaza? Are we on it the rest of our lives?

[DanL]

@Tracey - all prayers accepted and reciprocated. Everyone on these forums, patients and family go through so much and I am sure that like me, we all appreciate the support.

@Bailie - the studies that I have read about post-SCT relapse are not very thorough, have lots of gaps, lack good scientific data, and have to cover a very wide range of what is called relapse. Examples are ranges of chimerisms, wide range of blasts, wide range of disease -meaning some to low grade MDS, and some to the various types of AML.

The most comprehensive studies I have seen seem to point to an overall cure rate of about 25% to 30% in relapsing patients, and these mostly were treated with Vidaza - with or without another drug, and sometimes with a donor lymphocyte infusion. The biggest problem with this study was size and that it was retrospective, so there were no real controls on the study to show that one treatment was better than the other. A second transplant was used in some of these cases as well.

As for me - I completed my sixth cycle in early February and have not had any additional cycles since that time, and we have not discussed continuing any further as everything seems to be moving along in an acceptable direction, so vidaza may or may not be in my future.

I have talked to a couple of patients that had similar relapse profiles to mine that are doing well 2 and 3 years after the initial relapse and who are no longer on any maintenance type of chemotherapy, so I am holding out hope that I will follow their success.

As for the sleeping and being tired - yep - happens. There are days where I am awake and productive for many hours per day, and days where I probably sleep 16 hours including naps and just flat out melt downs. Hopefully the people around you understand that you give everything that you have everyday - and some days it just isn't as much as you would like. We have to make choices and sometimes they suck - i really like cooking Sunday dinners for our many family members and occasional friends - and sometimes by about 4pm I am on the collapsing side of the day - it has to be all hands on deck to help me get through - but they are getting used to it and coming over earlier - helping earlier.

Life is good. Not always easy, but always good.

[bailie]

Thank you Dan. Your comments really help. I can identify completely with your sleep/tiredness. My experience has been as you described.

The Vidaza information you have seen is interesting. It is similar to the studies I have read (and probably the same ones). The Vidaza brought my donor cells back to 100 percent, no trace of leukemia and no mutations before the beginning of my 3rd cycle. It is the hope that the donor vs. leukemia effect will be strong enough to take care of the leukemia. It will be interesting to see how long my Dr. keeps me on the Vidaza. The big question I have would be if a Vidaza maintenance program (5 days -6 weeks) would be beneficial or would a person's body become immune to the benefits of the Vidaza and relapse again. Or, would it be better to do as you are doing and stay away from the Vidaza until relapse might occur again. I doubt if there are any studies available that could answer that.

Again, thank you and best for you.

[Chad S]

Bailie and Dan, Thank you for posting your updates, I know they are so helpful to others in the same situation. There are many success stories but they aren't told enough, so I want to add an update on my wife's status. She had her 2 year follow up at MD Anderson in May and all of her counts are normal and she had no blasts in blood or marrow. She is not on any type of chemo or immuno-suppressants and has had all of her immunization shots. The doctor gave her a hug and told her to come back in a year. We are not out of the woods yet but her chances for relapse dropped significantly at the 2 year mark. She did not have acute gvhd and has had very mild chronic gvhd. Mainly itchy eyes and occasional stomach cramps and nausea, but her symptoms are not frequent.

She was diagnosed in February of 2013 with MDS RAEB II. She presented with pancytopenia and 19% blasts (blasts in marrow and blood) and normal chromosomes. MUD BMT in May 2013.

She went to the beach this May and can now have a glass of wine with dinner, so life is good. She still gets tired easily and can "overheat," which is a term we use for when she is outside in hot weather for too long and she gets a horrible headache and just feels awful, so we work very hard for that not to happen. When she goes to the beach, our son's baseball games, etc she stays under shade at all times.

The reality of what she went through is always in the back of our minds, and a part of us feels like we are sometimes waiting for the other shoe to drop. But life is very good right now and we are enjoying it!

I read all of your stories on this forum and hope and pray for continued progress for you.

[PaulS]

Thanks everyone for sharing your inspiring if sometimes sobering stories - and I wish you all continued progress. Stupid speed bumps.

[DanL]

Chad,

Congratulations on your wife reaching 2 years disease free. That is awesome. It is great to see success stories. I am weaning off of some of the immune suppresives which is great, and a beach vacation is definitely in my future once I am off of enough of the drugs that cause hyper sun sensitivity. Way to go!

[JanetB]

Thank you to all for sharing. My husband, 54 is about six months post BMT from donor. He has had four rounds of Vidaza since BMB at 30 days showed cancer cells. We're awaiting results of new biopsy. He has had skin problems. Dermatologist diagnosed follicuitis at Friday appointment. We're wondering if it's from GVHD or a side effect of Vidaza? He couldn't tolerate tacromilus (made him certifiably crazy) so he's on siromilus. His face worsened after his dosage was reduced from 2mg to 1.5 mg. We obviously don't know if he'll be cured, but I have read that mild GVHD helps kill the cancer. (Doctor at University of Florida specializes in using GVHD to kill blood cancer.) We have befriended a gentleman, 71, who had a BMT for AML 11 years ago. There are success stories and even if we only get another 10 years, we'll feel mighty blessed.
Janet
Dennis diagnosed with MDS RAEB II in August 2014; allogenic bmt in February. All his counts were very low prior to diagnosis. Multiple blood transplants prior to BMT. One since transplant.

[bailie]

I am sorry for the relapse. It would be difficult/impossible for any of us to know if it is GVHD or a side effect from Vidaza. I have had no side effects from Vidaza and would guess that it is probably GVHD. You are correct, it often helps to have some GVHD to combat the return of MDS. What does your transplant doctor say?

What percentage of donor cells are showing now? Was he ever 100 percent donor cells? Are his blood counts bouncing back now that he has had four rounds of Vidaza? What is his blast count?

I relapsed at about Day +230 and am now have completed four cycles of Vidaza.