The trial at Hopkins that Karen went through was specific to reducing GVHD by treating with high dose cytoxan for two days right after the transplant. Do you think that maybe doing hycy now could be an option to explore?

I know it's a long shot but may be worth exploring.

Hang in there!!!!

NIH Trial
 

http://bethesdatrials.cancer.gov/cli...-0281#eligible

The link above is for a cGvHD study at NIH I've been reading about. Here's an excerpt:

• Trial participants will come to the NIH in Bethesda, MD for a comprehensive, multidisciplinary evaluation lasting 4 days.
• Participants will have blood testing, organ evaluation, and comprehensive consults with multidisciplinary team members.
• Recommendations will be made to participant’s referring physician for GVHD treatment options.

This trial also sounds like a distinct possibility for you, Laura.

Thanks for all the ideas....on a plane riht now to boston...so really quick...it sounds like they r saying cgvd...and want to start txment right away....i am on high dose prednisone and go downhill with each day....so will update more...apts first thing in morning...laura

Good luck, Laura! I'm thinking of you...

Good luck Laura.
i hope everything will be fine.
all good thougts with you.

I'm doing my best to send positive vibrations your way too, Laura! Hope the docs at DF can turn things around for you.

Laura,

I know I speak for everyone here when I say that we are deeply concerned and are wishing the best possible outcome for you. You have been such an encouraging and supportive friend and member here and it pains us to see you struggle this way.

Keep up your strong self advocating abilities and take things one day at a time - we are all rooting for you.

Get well soon,

Nicole

Have you got any update Laura? We're all thinking of you here...

Hello all...I am sorry to leave everyone hanging....I made myself update my site tonight...but feel so crummy I am going to be lazy and copy and paste here...but I will give you guys the real update that I can't post on my page because I have to be careful about Mayo there (basically the juicy details)....hopefully tomorrow?

Laura


I am sorry for the delay. And this will probably not be as updated as it should be either as I feel pretty crummy.

So basically this is the short version of the story.

Remember the drop in platelets? Well that was just the start...

So my platelets crashed down and I was started on high dose Prednisone (which the crash in platelets is most likely from the graft versus host disease too). A few days later I started noticing this weird skin rash that was very, very mild and wouldn't last long. A few days after I returned from Boston in June, after having been outside (sunscreen, shade the majority of the time, pants, hat, etc), I came in and my skin was very red and swollen. After a few hours it went away. Then because my platelets had gone up to the 100,000 range my Prednisone was dropped and things went out of control. The Prednisone was put back up to the highest level and then some on certain days but things continued to get out of control. It got to the point where basically any second of sun/uva light from lightbulbs/heat--including talking on phone for a minute, showers, cat sitting by me, etc would immediately swell up my skin and make me look like I had third degree sunburns minus the peeling and blistering. The longer the trigger, the worse it was and the longer it took to go away. My knees would swell and be so red, it was so painful I couldn't walk. Then my mouth started to go....my mouth became so incredibly dry, sore/painful, red/white spots...it hurt so bad I couldn't eat/drink/talk. However, SURPRISE!!!!!! My gut is basically normal since being on high dose Prednisone, which the theory is that it was from GVHD all this time. And my musculoskeletal symptoms have also greatly improved since being on Prednisone too, which the theory is that too was from GVHD all this time also!! And originally my fatigue was much better on Prednisone too, but when my skin went out of control so did my fatigue, so the theory is that my fatigue was because my body has been fighting GHVD this past year or so and anyhow....

There are a few other suspected areas of my body that also were being affected by GVHD too...

So what to do?

Well let me just say what happened. I went back to Boston a few weeks or so ago. I got started on Sirolimus. An immunosuppressant drug. Basically my donor's immune system has decided it doesn't like my body. The immune system is what recognizes what is foreign and destroys it...ie..you have a cold, it attacks the cold germs. Well my immune system got replaced with someone else's. And it has decided it doesn't recognize my body and so in order to protect itself it has decided to attack my body. The Sirolimus will suppress the immune system in hopes to suppress the attacking. Usually the first line of treatment for graft versus host disease (GVHD) is high dose Prednisone. And most of the time that is enough to take care of the problem and you can get weaned off it. However, I am on week six of high dose Prednisone and I was only getting worse by the day. So that is why the Sirolimus was added. I also was given Decadron (steroid) mouth rinse for every 6 hours to help the mouth. My skin is so much better. I still have issues but it is mild compared to where I was. And only after two weeks on the Sirolimus. My mouth is still pretty dry, but it isn't as sore and there are just a few areas left to heal.

From my understanding the plan is to continue on the medications until my symptoms go away and then remain on the medications for xyz (??) time frame. Then try and wean off the Prednisone alone. Prednisone is a nasty drug and the sooner I get off it, the better. (Already having to take Norvasc for high BP, watch my blood sugars and give insulin at times, etc because of the Prednisone. And not to mention I already have low bone density and the Prednisone could suck my bones even dryer and the risk of avascular necrosis.) Now here is where it will be tricky. The weaning process. If you go too fast, it could cause the GVHD to flare all over again, etc, etc. So the goal would be to wean the Prednisone carefully. And then down the road the Sirolimus.


Sadly about a week ago I caught bronchitis. I was started on the Z Pack, but the past few days I have gotten worse with wheezing, severe cough, congestion, possible sinus something or another going on, etc. So I feel pretty crummy. I am off to my primary tomorrow for a check. So that is why this is still a short update.

I am so thankful to Dana Farber in Boston and the medical staff there for basically stepping in and saving my life. I am so blessed they are willing to work with me. My physician at Dana Farber is actually chief of the program. He is also a pretty good leading authority on aplastic anemia status post bone marrow transplant and chronic graft versus host disease...sounds like me, huh? I can't help but wonder if God had it all planned out...he knew I would need this doctor...and he set the path in motion to allow me to have this doctor on my side...maybe that is why my gut was bad for so long? Because if it wasn't then I never would have gone to Dana Farber in June...and never would have connected with this doctor...so I wouldn't have had him in my back pocket to call on a few weeks ago when I so desperately needed his help.

OMG, Laura, so it was gvhd all this time? It makes me wonder why Mayo were so quick to dis-count it and put you through so many endoscopies and tests which didn't show it! But it makes sense that you were exhausted all the time, of course... You're so lucky to have gone to DF when you did!

Thanks for the update!

Laura, the whole thing sounds like a nightmare. I've never heard of such severe heat/UV sensitivity, and with the hot weather you've been having in your part of the country it must be just awful!

Following other peoples' transplants has been such an eye-opener to me. I never dreamed there could be so many complications this far out from the actual event, but I've sure been learning about them from several patients. I sure hope you can find a way to manage all of the GVH outbreaks and get your life back soon! You've been through so much.

I appreciate your keeping us updated.

Sad....had a big update and hit send...now I see it didn't post? ....

Don't you hate when that happens? :mad:

It may help to click the Remember Me? checkbox when you log into Marrowforums. But sometimes it's just a connection glitch. If I'm writing a long post I sometimes copy it to the clipboard before submitting it, just in case.

thanks for the tips. I usually do that too but was writting from my phone, so wasn't sure how to do that. Oh well...I will try it again once I get home to my computer. For now I will just leave it as still trucking along...still having problems with skin/mouth but I think it is better. Also still on Sirolimus/Prednisone. Sirolimus was increased a second time. Will update more once on computer.

But I was wondering if anyone had strategies for dry mouth. My dry mouth is driving me insane. And I feel at times it can be really bad and other times not as bad...but I think that has to do with eating the "wrong" thing to trigger things worse. Dr. Antin wants to start a silivia stimulant and I am eager to do so as it is such an awful feeling. Still doing decadron seish/spit...which bc my mouth is so dry...actually these past few days has been burning my mouth...and the dryness is causing pain now too...

Also has anyone heard of Prednisone causing heat intolerance?

More later, laura

(Sorry but another cheat post...a copy and paste from the update I just put on my caringbridge site.)

Since I last wrote, I have basically been focusing on combating the GVHD I have been fighting in multiple areas.

My Mouth:
After starting the oral Decadron from Dana Farber, basically a steroid I swish around in my mouth for about five minutes and then spit out, my mouth did get better. Not 100 percent, but better. However, the past few weeks, it has gotten worse. Actually the worse yet. Thankfully these past few days, it has gotten a tiny, tiny bit better. At its worst it was as follows: Severe dryness due to my salivary glands having been attacked by my donor's immune system. I was started on Salagen 5 mg four times a day as needed to try and force my salivary glands to make saliva. This has seemed to help. My gum tissues are red and swollen and are painful. I have some sores that bleed at times. I also have white/red patches. My lips, mouth, throat burns whenever any food or liquid is put into my mouth. My tongue also has sores and is sore and burns too. I require pain medication to even force myself to drink and eat hardly anything. Nothing tastes right or good. As a result of these changes, oral Prograf was also started last week. Prograf is an immunosuppressant medication. I basically mix the oral decadron and prograf together and swish it around in my mouth for about five minutes. Then I spit it out.

My skin:
My skin still flares and swells and turns red. However, instead of head to toe redness, it is more of a lacy red, rash. My cheeks and ears still can turn bright red though. My arms do not seem to be flarring currently but I also wear long sleeve UVA protection shirts. Per Dana Farber, this will take awhile to get better, but I am seeing improvement. I still have to avoid the sun, heat, UVA as much as possible. I also basically only wear UVA protection clothes too.

My Sirolimus medication has been increased a few times, in order to get my blood levels adequate. I currently am taking 4 mg daily.

I was also having severe knee pain and there was a fear of avascular necrosis occurring (side effect from Prednisone). This was checked out this past week. Thankfully, I do not have this. They are thinking because my knees swell when my skin flares, that the swelling puts pressure on certain parts of the knee and prevents normal movement or something like that.

Since I have been on high dose Prednisone almost three months and with the fear of the side effects, they are trying to wean me slowly off the Prednisone. About a week ago I dropped from 60 mg to 40 mg daily. And this week we are keeping it at this level. So hopefully nothing flares and my platelets don't drop. (Last level 103).

All my other counts remain normal.

That is a very basic rundown of where I am at now. Sorry for the delays in postings. It has been pretty crazy here.

Gosh, Laura, it has been a miserable summer for you, but there was nonetheless a bit of encouraging news in your post.

I'm so glad you are tied in with Dana Farber. I hope that you will be able to eat and drink more easily soon and that the weaning from prednisone goes smoothly.

Hang in there Laura...we are all pulling for you!

A message of support
 

Hi Laura,

Just reading through your posts it has been a tough few months, hoping that things are improving for you and will continue to do so. Just wanted to log on to say we're sending you positive thoughts.

Debbie

Hi Laura,

is there any new news?Did you drop your prednol dosage?Still 40 mg.

half-matched SCT
 

day 21

I was reading a Blog page of a young cancer patient (fighting with cronic GVHD , 3 years after having SCT)
& he says:
"Unfortunately Life has been harder after beating cancer then when I had it." :confused:

my mom feels almost the same right now :( i hope her thoughts will change after beating GVHD !!!