And we have a date

[Cheryl C]

How exciting not to have any evidence of dysplasia! Well done - hope this progress continues, DanL.

[Whizbang]

Dan,

Congrats on your 100 days, just wait, the second 100 goes by in a blink, I'm at 216, and 100 seems like yesterday...

Praying for you daily, May God Bless!!!

Dave.

[DanL]

Dave,

Are you doing any work currently or are you still out on disability? Just curious to see when people are going back. I feel like I am still several months away, but maybe everything accelerates a bit between 100 and 200 days?

Glad to hear you are well.

[Whizbang]

Dan,

I'm planning on going back after 9 months, 8/1/14... I'll probably go back 3 days a week for 3 months, and then work my way back to full time after 12 months..

Of course this all assumes no complications...

My stamina is not there yet to work full time, and other than walking, any real exertion can get me winded pretty quickly...

My doctor put it this way: "the first 75-85% takes 6 months after BMT, the remaining 15-25% takes another 6 months, and that is best case scenario"...

Recovery is very slow going anyway you slice it...

Best Regards,
David

[Wife of Diver Down]

So glad to hear of your progress and great results!!

We are at d +104 and trying to make small steps toward improvement. BK hem cystitis nearly resolved - no more bleeding for over a week and minimal symptoms and serum BK PCR down from > 2 million to 2000 copies with no antimicrobial intervention.

The skin GVHD continues to be problematic with recurrent flares - though of lesser intensity - when oral steroids are lowered. Now down form 80 bid Prednisone to 50 bid but with another flare and hoping we don't need to increase the dose again as he currently has steroid induced diabetes and proximal myopathy.

Local docs continue treating with photophoresis and steroids but I have heard Sirolimus can potentially be added to tacrolimus and assist with lowering steroids. Do you know anything about Sirolimus?

I see you are on topical Lidex and Desonide. On which areas are they applied? Do you also apply Aquaphor over the steroids to enhance potency?

Best to you!!

Congratulations again!

[bailie]

Very good to hear the positive directions for all of you. I am looking forward to matching your mental stamina. I will draw on your positive outlook and willingness to do the hard work.

Interesting that the only matches for me came out of Europe. One 20 year old male and one 20 year old female. They couldn't find anything close in the U.S.

[DanL]

@Bailie, all i can say is thank goodness for the Germans and French. I had 6 ten of ten matches to choose from all French or Germnan in origin. You are also very fortunate that they are both so young, especially the female if she has not yet given birth.

@wife of diver down, I am very glad to hear of your husband's progress. I was quite worried about him for a while, but he sounds like one heck of a fighter. I am sure that you are proud. I am using lidex on my arms and and a couple of spots on my legs, but using desonide on my head, face, and neck as needed.

I had not heard anything about using aquaphor to enhance the effects, but it might help with the peeling and burning that lidex seems to induce, and maybe with the skin regeneration. Lidex tends to burn me a bit. Because I have never been biopsied, I do use clotrimazole 2 times per day on the arms as well, because I had issues with fungal infections initially.

Lastly, it is somewhat common to add sirolimus to tacrolimus to provide additional immune suppression, but oral steroids are the standard, so long as the patient can deal with the side effects.

It is really great that the BK virus is diminishing.....I have been seeing a pretty good trend in the right direction myself, although I don't know the exact clone copies, I can tell you that they are down based on how I feel.

[Heather8773]

It is amazing how fast and slow they pass keep up the positive post mindset and action!!
Prayers!

[DanL]

It has been a while since I provided a meaningful update and thought that writing this today while I have seen some improvements and putting the obstacles in context was the best time to write. I know that at times our news and experiences become negative, and with me, I always try to live with balance, so here is my update with a little bit of both.

Since about May, I had been seeing a steady decline in my platelet count from 140k down to 53k, while red and white counts were doing well. I had a persistent rash on my arms and neck, but really nowhere else. I was starting to show some signs of GVHD of the gut and mouth, and probably the eyes as well. About 5 weeks ago, we took a skin biopsy and found that the rash on my arms was indeed GVHD ranging from grades 2-4. We hadn't really staged the gut symptoms as I had been taking budesonide for a few weeks and it seemed to be helping. Because of the declining platelet count and the mouth GVHD and the skin GVHD, it was suspected that I might have a little more going on than meets the eye. As a result, sirollimus was added to the tacrolimus that I was taking. We were trying to avoid adding steroids as I have some avascular necrosis, which steroids do not help.

My 90 day marrow biopsy was clean and looked good, but platelet production was down.

After two weeks of sirolimus, I was experiencing more fatigue, and my platelets dropped to 23k, which was a little alarming since I had not been that low since being in the hospital for transplant. Red blood count and white blood count also dropped, and there appeared to be a hemolytic anemia developing, lots of marrow stress, and even NRBCs in the CBC differential, which I had not seen since transplant.

Fortunately, when I went in for my regular checkup, the doctor recognized that I might be experiencing a reaction between the tacrolimus and sirolimus, so we stopped the sirolimus and started on prednisone. The doctor pulled a peripheral chimerism study to see if there were any engraftment issues as well, and was ready to order another marrow biopsy. Two weeks later, platelets have doubled, red and white counts are back up, and I am feeling a whole lot better (never thought I would say that while on prednisone, but it is completely true!) I still have GVHD symptoms, but my arms almost look normal, gut is doing better, and vision is clearing up a little - enough to see the computer screen pretty clearly today. The chimerism study came back 100% donor still, so the declines are being attributed to systemic GVHD, which appears pretty obvious now.

We have been decreasing prednisone each of the past two weeks and are seeing where it takes me.

Along with all of the other changes, my team of doctors has really been working on the nutrition and supplement front -- meaning that I am on insulin to take care of the spikes in glucose levels from the prednisone and budesonide that I was previously on, I am beginning to take prescription strength vitamin D and have been on IV magnesium, I have been to an endocrinologist to check hormone levels and bone density, and see a nutritionist weekly to every couple of weeks as needed to make sure that I am doing what is needed to reduce infection risks, eating well, and maintaining as much muscle mass as possible while on steroids.

Although the only constants are adjustments and changes, the open communication, responsiveness, and consistent interaction with my team has been tremendous, and it feels like they are helping me take care of the many needs that are present post-bmt. I know that there is a long way to go and that there are many potential risks and obstacles ahead. I am not a person to share much about my health or life as a whole, but given the number of people going through transplant, making life-altering decisions, and the relative paucity of information explaining post-transplant life and expectations, I wanted to share a little bit about my ride. I fully expect more change to come, probably new treatments and a continuation of various bouts with GVHD, but see these as acceptable and necessary parts of my recovery.

Last thought for today, I am so appreciative of the members of this forum, you, your health, strength, and courage are in my prayers daily.

[Whizbang]

Dan,

It's great to hear that things have swung in the right direction... We all know that this road is not an easy one, and there will be many things that stand in our way... But if we just keep moving forward, we'll be one step closer to reaching our goals...

All the Best, and may God Bless us ALL!!!
David

[sbk007]

Dan, Its great to see you post.
Sounds like you hit a few bumps but luckily your Docs are on the ball.
you dodged a major bullet there when they caught the drug interaction.
Hopefully they get the GVHD under control very soon and you get back to your regularly scheduled program.
Take Care,
Steve

[bailie]

Dan,
Great to hear that the situation is getting better. Keep it up!!

What is your living situation when dealing with the issues? Are you home or in the hospital? Or, checking back with Drs daily? I am also curious about therapy? Are you on your own or are you in a therapy program?

It seems the closer I get, the more questions seem to pop up in my mind.

Thank you.

[DanL]

@Bailie, I have been home since day +17 or so and have not been readmitted to the hospital. I have been following the guidelines that were given to me pretty closely - something changes or doesn't feel right, call the doctor. Have a question, call the doctor. The staff is on call 24 hours a day and I have called them 3 times during those on-call periods since getting out of the hospital. I am able to take care of almost all of the physical aspects of living - I cook, shop, clean a little - very few chemicals.

My team of doctors has on-staff social workers, psychologists, and other counselors who work with transplant patients. They also have physical therapists that they work with on a regular basis as needed, so I would say that I am not on my own for any of these issues. I would certainly ask your team about the different services they provide to you as a potential BMT patient though. I interviewed 3 different centers before deciding to stay local because of the amount of support and experience that they have doing transplants, particularly with MDS/AML.

@Dave and Steve, thank you for the well-wishes as always. It is a journey, not a quick stop and fix.

[slip up 2]

Dan.....it is wonderful that you are doing well and onto great things.....your positive outlook and your tremendous knowledge of the disease has helped many of us thru times of stress and understanding....

I still come to these forums from time to time, all that all of you go thru, will one day help in a cure.....

All the best to you and your family
Kate

[Neil Cuadra]

Kate,

I'm always glad to see your posts. You are such a strong supporter of the patients and family members here.