Hi, did anyone suffer from acute GVHD of the skin post transplant? It seems my sister is not responding to steroids or ECP so they are suggesting buying a drug from the US that could cost a minimum of £1000 a month to be.
She hasn’t been on ECP that long so we are wondering if it just needs more time to help.
Any advice or similar stories would be helpful
Hi, it sounds a worrying time for both of you. I cannot answer your question but I have always found it is best to ask my medical team about all my questions, fears, thoughts and feelings and to give myself time to make my decisions. What’s it like for you being the sister?
We are and have asked the Drs but my sister sort of sends me out to get patients perspectives and experiences. This way I can giver her perspective on the information as she tends to only see the negatives. It’s amazing how stories from others can help you process the prognosis or new treatment paths given to you by the Drs. It’s hard to see the road ahead and sometimes you need someone to shine a line on the road to help.
As the sister, I see my role as the one to keep her, my family and her young families positivity in check and to help her maintain perspective and patience.
Hi, I just wanted to welcome you to the forum. I have no expertise in gvhd but as a blood cancer patient know that this will be a stressful time for you and your family. You don’t mention your sisters diagnosis, but there may be a specific website for that disease, I have ppcl myeloma and we have our own website with a nurse led phoneline you can call. I am very happy that your sister has someone like you to support her, you will be very important in her treatment and recovery, so thank you for all you are doing.
Apologies, she is almost 1 Year post BMT for AML FLT3. She has had many set backs to get to this point, pneumonia 3 times, sepsis with a stay in ITU and on dialysis. She has also had CMV and RSV.
It’s a very long road for all patients but there seems to be little in the way of a patient to patient knowledge base.
Hi, I was so sorry to hear of your sisters suffering, I myself was not eligible for a stem cell transplant because my chemo damaged my heart and I also have total kidney failure and am on full time dialysis. I am currently in remission after 6 months of chemo. I understand your desire to leave no stone unturned in finding solutions for your sisters gvhd, she probably just wants to get rid of any reminders of what she has been through and have a degree of normality. I think it helps to get an objective opinion on pursuing any treatment that will involve extra expense.
The cancer research uk has a interesting article on the drugs used for hvcd which I have included below .
I hope you are taking good care of yourself , carers are so important.
I also found this for you from Anthony Nolan
6 months post sibling allograft (BMT) I developed acute GVHD.
Initially this affected the skin of my lower legs and back, but despite an increase in my immunosuppression, over the next 6 months the condition went chronic making me quite ill, requiring admission for IV steroids.
I was referred for ECP to “try” and by the time I started at Guy’s Hospital the palms of my hands and the soles of my feet had split, together with my lower legs, looking and feeling like they had permanent sun burn off the worst sort.
I can distinctly remember hobbling from London Bridge station to the unit in the Bermondsey wing; it must have taken me at least15 minutes!
Over the next 3 months of fortnightly ECP my condition stabilised (ie did not get worse) and over the following 3 months slowly, but slowly improved.
Around about this time GVHD dealt it’s trump card; ocular GVHD. But that’s another story!
After a year we reduced the ECP to monthly and another year later quit all immunosuppression (cyclosporin & steroids). That was June 2016.
Since then i have been back on fortnightly ECP for 3 months following a bout of pulmonary GVHD before reducing back to monthly.
Last autumn we tried 6 weekly for 3 months but the GVHD spiked again - so now back monthly. .
In my case GVHD has been a wicked condition.
I liken it to a game of Snakes & Ladders; you think you are nearly at the finish line then you land on a snake (maybe something as simple as a cold virus?) and back down the board you go.
Whilst I have learnt to live with it over the years, there are times when I am thoroughly bored with it.
Another long story from me I am afraid.
But the point is that whilst ECP has for me been a life saver, it is a long job; 4.5 years in my case.
Don’t give up on it, as it the only immunosuppression that does not carry the nasty side effects of long term use of the other drugs.
Thank you for your post, it really helps to hear a first hand experience of this problem and I am sorry to hear you have been through so much but glad things have improved for you in recent times. As blood cancer patients we all have different obstacles to overcome some higher than others but we still have a lot in common. My treatment had less side effects but my prognosis is terminal, but I have a reasonable quality of life so can’t complain too much.
Thank you so much for sharing with us. I am so sorry to hear about your experience and I honestly cannot imagine how difficult it must have been for you. I think its so powerful that you label GVHD as a game of Snakes and Ladders. Please don’t worry about sharing long stories on the forum. Our community members are quite open and eager to share and read stories such as yours. You mentioned last Autumn your GVHD spiked. How are you feeling now? Is it going smoothly that since you last spoke on here?
How are you and your sister doing @Jennymoss, has there been any change or improvment in her GvHD?
I know it was a little while ago but thank you for sharing your experience of GvHD so openly and honestly @Robson I can imagine it will be really helpful for others to gain some insight & understanding. How are you at the moment?
Just wondering how things are? Has your sister seen any improvement ?
I am in remission from AML with a different mutation so not had a transplant yet.