Day 82 update
 

Hi All - Closing in on day 100. For the most part I'm doing well - getting to go home where I can take walks and see my dog - otherwise I'm still going to the hospital for blood and treatments at least once a week. its taking a long time for my numbers to rise - Hgb hovers around 8 and I still am getting transfusions - although slightly less frequently - My platelets were up to 60 but have drifted down to 19 and I needed a transfusion yesterday - first since leaving the hospital. Good news is my WBC and neutrophils are well into normal. The other good news is there is no sign of disease or cytogenetic abnormalities in the marrow. At this point I'm 88% donor - with another BMB scheduled at day 90.

A couple of weeks ago GVHD began to develop on my skin - they gave me a big dose of prednisone which worked well for a time - but then they tried to taper me - which only achieved a stalemate - I'm on 50mg prednisone daily and the rash covers most of my body - from shoulders to feet - mostly red with some small raised welts - it can get itchy and annoying and I'm nervous it will get worse. Prednisone is wasting away my muscles, causing edema in my legs and spiking my blood sugar - eager to stop the stuff.

The plan is to start me on Retuxin tomorrow with the hope of clearing up the GVHD and getting me off the prednisone - they also hope it will generally help my counts. Have others tried Retuxin for acute GVHD?

Trying to maintain a positive attitude and exercise as much as I can. Mostly trying to be patient - Anyone take so long for counts to get closer to normal? Best to everyone.
Thanks
Paul

Paul, so much to identify with my experience. I was on prednisone (160 mg/day). It did affect my muscles. Also, I got diabetes from the prednisone. Fortunately, it went away when I tapered from the prednisone. My glucose numbers fluctuated greatly (from 550 crashing to 40s). I was doing insulin twice a day.

My skin GVHD was not as severe as yours and cleared up in a couple of weeks with a steroid crème. I would get it on my shoulders, then it would clear up and move to both arms, then to my legs. I couldn't feel it, so that was good.

I was on Tacrolimus so I can't give you an experience with Rituxan.

Keep up the good work!! I understand the mental part of this you are suggesting. Thank you for the update.

Hi Bailie - Good to know I'm not alone - I'm also on tachrolimus and mycophenolate to prevent GVHD - they want to get me off the mycophenolate as they think that also maybe holding down my counts - I've been on these drugs since the transplant - When the rash started my face became quite swollen - especially around the eyes - and they started on 160 mg of prednisone with the idea of fixing it and tapering quickly. - my sugar hasn't gotten that high - but I was also on prednisone in the hospital and needed a couple of shots of insulin there -

I'm supposed be using a steroid cream as well although I go through a tube ever couple of days given the extent of the rash. While it itches, its fairly tolerable and also seems to respond to an antihistamine - i know people have much worse - just hoping it doesn't progress.

If the retuxin works the rash gets better, they taper the prednisone and eliminate the micophenolate and my counts go up and all is good in the world. Not sure what the plan C would be - so I'm going with plan B for now. Plan A was prednisone and cream...

At least there's no problem with appetite with all the prednisone.

All the best
p

Paul, I got my steroid crème in 1 lb. tubs. It is much better that way, especially if using a lot like you are.

Hi Paul,
Thanks for the update. Sounds like you are doing well other than the GVHD and the low counts. Glad to hear you are getting to go home and see your dog. :)
I hope your counts get up to normal soon. Keep up that positive attitude! It gives me encouragement every time I see one of your posts.

I see my transplant team next Friday to discuss what the plan is going to be. I plan to start Vidaza again in January, since it will most likely be months before I would even be well enough to do the transplant.

Praying for your counts to continue to climb.

Tracey

Hi Paul, and thanks for the update. My GVHD is slowly getting better. I had pred, ritux, photo treatments, and a few other things for almost 4 yrs. I have shingles right now, but my trans. doc had me start on an antiviral again, and they are getting better. The transplant process can be slow and annoying w/ all of the meds and appts, but I would do it all over again. Good luck and keep us updated.

Mario

Mario, what did they say concerning a shingles shot after transplant to prevent shingles? I know there is a waiting period because of the live virus vaccination, but I thought that you would have had the vaccination before four years. Congratulations on the "almost four years". I wish you continued success.

insulin and counts
 

HI - I Spoke too soon about my blood sugar - its now persistently high mostly 200 something but it has spiked higher - and I'm monitoring it and taking insulin. My hands are very dried out and sore - bottoms of my feet are painful too - presumably from GVHD - and the rash ebbs and flows but covers about 2/3 of my body in mostly reddish slightly raised rash. I got more of the cream but not sure its working other than maybe helping prevent it getting even worse. My blood counts are still low and seem to be dropping - now the WBC dropped just below normal - neutrophils still ok - my legs are pretty swollen which makes walking more difficult - trying to stay positive but Im getting nervous. i start Rituxin Tuesday... but it feels like I'm going backwards...
p

Paul, I understand how you are feeling. Don't give up. It is easy to become discouraged. Do your best to battle the mental part of this. I fully understand how difficult that is. Remember your blood tests can bounce all over the place. I thought about you a lot last night. Do your very best to deal with this, sometimes people turn this around quickly.

Hi Paul - Just want you to know that you are in my thoughts and prayers.

Have you read the info on GVHD here: http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html It's a very readable explanation and I think it gives a lot of hope too.

Hi Paul,
Sorry to hear about your blood sugar and the counts and skin issues. I agree with bailie - be your strong and positive self! We know you can do it! Will be praying for you that your issues all turn around before you know it. Hopefully the Rituxin will help. We are all here for you!

Thanks again Baillie for the encouraging words - I am NOT giving up -( who'll make the latkes)? - But this process can be discouraging - and I have a long ways to go. I was never a good distance runner - guess its all about letting go of fear and staying positive no matter what - I won't get through this without always being grateful, humble and positive -which is not always easy - some of the stories one reads on the internet can be very depressing.

Thanks for the thoughts and prayers Cheryl - the link was also very helpful/hopeful.

Tracey - with what you're going through just to get to the transplant I've no business whining - Thanks also Mario for providing some perspective.

I start Retuxin today and get new counts - Screw GVHD - . I'll let you all know how it goes.

Paul

all good
 

Hi all - My blood counts were all up today - the Hgb was the best its been and seems to be rising on its own finally - platelets still low but holding - whites back to normal and neutrophils still good - I tolerated the Retuxan well and feel much more positive. I really thought i was starting to fade - Quite an emotional roller coaster - thanks again everyone for the encouragement.

What wonderful news Paul. I've been following your progress and praying for you. Keep it up and blessings your way.

Glad to hear Paul

Excellent news, Paul!

That is fantastic news Paul! So happy things are turning around!