pink patches on skin

[Tortina]

Hi

I am 44 days post SCT and am at home recovering .

I’m feeling quite well . I am 68 and have no other health issues .

My blood counts are ok considering it’s not long since I had the transplant .

haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils 2.54 I get tired which is to be expected .

So far the worst thing has been pink patches on top of my feet and on my knees . Also a very small area on my knee with more of a rash .

In the mornings after a good nights sleep all is well but by lunchtime the pink areas return . They definitely get worse as the day goes on . My consultant prescribed a moisturiser and steroid cream which I have been using as required . She thinks it’s mild gvhd .

I have noticed that if I put my feet up and rest the pinkness disappears . If it was gvhd would that be the case ?

Anyone else experienced similar after their stem cell transplant .

My hospital treatment has been amazing . The staff and nurses have been wonderful .

Faced with a median life expectancy of 35 months I decided to go for the SCT .

I’m so glad I did . I now have hope for the future and so much to live for .,

Tortina

[Scaredy_cat]

Glad you are doing so well after such a short time though don't be surprised if your counts yo-yo. Mine did and I've just passed day 200. No I've not had these patches but it is something that needs to be discussed with the transplant consultant; repeatedly if necessary. Has it been there for her to see herself? Perhaps take some photos. This would be good to have as reference for size and location over time anyway

[Joetcalr]

It’s so good to hear from people who have had SCT and come out the other side with things looking up.

I’m interested to know how ill you were when they offered it to you? I hear from people that we have to be in good shape, but also a median of 35 months survival sounds very serious. Best wishes for your good recovery. Jo

[Tortina in reply to Joetcalr]

I was quite well when I was offered the SCT .

I had been monitored on watch and wait for a year previously . I noticed a few months before the final diagnosis that I thought my spleen was enlarging . It had a bit . When I discussed it with my consultant she sent me for a bone marrow biopsy and that’s when I was diagnosed with myelofibrosis .

It had been identified that I had the JAK 2 gene but I had no other mutations .

During the watch and wait period my consultant told me I had MPNU or a myeloproliferative disorder which was unclassified but likely to become myelofibrosis .

My consultant told me it was best to have the treatment before I became poorly and was still feeling well . Other than tiredness I didn’t have any other symptoms . She also told me it was best to have the treatment in the summer when there are less bugs around .

I was quite active too but starting to moderate my expectations as to what I could do in a day .

I don’t have any other health conditions and have had nothing wrong before this episode .

Due to my age I felt it best to crack on as I am just 68 now and the hospital don’t like to give SCT’s to people over 70 . That’s what the consultant told me anyway .

I hope that is of some help .

My consultant told me that 65/70% get through and are in remission after 2 years .

She also told me after my many questions ‘ that they do work you know otherwise we wouldn’t be doing them ‘

The ward I was on was a bit like a factory . People constantly having the procedure . I was told they do 200 in a year . They did 9 that I know of in the week I had mine .

Not only that the procedure costs the NHS a lot of money . I can’t believe they would get funding like they do if it isn’t justified .

Under my circumstances snd after having all the necessary health checks I asked the consultant what she would do in my circumstances . The answer was very clear ….. she said she would definitely have the treatment ….. so that’s what I decided to do.

I hope that is some help . That is my take on it all but everyone has to make their own decisions before proceeding based on their own situation .

Everyone has their own story .

Best wishes to you

[Tortina]

Thanks for your reply .

Yes I have discussed it with my consultant a couple of times but she is not overly concerned .

I was just wondering if anyone had experienced the same .

I have been warned that my blood counts can yo yo .

[Otterfield]

Congratulations on your transplant, if that's the right word. I can't remember my counts at 44 days but I don't think they were as good as yours. I'm six days away from my first anniversary. As far as I know, skin GVHD can vary a lot. Within my first 100 days I had a really uncomfortable itchy rash on my back and stomach. I now have dry, red patches on my shoulders and I'm expecting more as I'm having donor lymphocyte infusions to improve my immunity. Only your consultant can say if your red patches are GVHD and I think sometimes they're not sure. Best wishes for your continuing recovery, Jennie

[Tortina in reply to Otterfield]

Thanks for your message Jennie Good to hear about your experience .

I wish you well going forward . Best wishes for your continuing recovery too ! H .

[Zingawinga]

Wonderful to hear youre doing so well, in your new life! Best wishes

[Tortina in reply to Zingawinga]

Thankyou for your good wishes !

[Wyebird]

Fab news about the SCT. Hope someone can help with the rashes and a solution is found soon xx

[Tortina in reply to Wyebird]

Thankyou . Hopefully they will disappear !