Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi everyone!!! just wanted to discuss whats happening to me after having had a Stem Cell Transplant from an anonymous donor on 28th February 2019.
I mentioned about the extremly dry flaky skin on my scalp and face which has now spread down my torso. I am dealing with this using Aveeno cream and coal tar shampoo as recommended by my Doctor. The skin around my eyes has now become sore and I have stopped using any makeup in case that is irritating it. I have noticed though, that my wrinkles are disappearing (always a rainbow). My hair is growing back curly (which I was warned about), after having had straight hair all my life. It is also black instead of dark brown (well, salt and pepper thanks to the grey). My eyebrows and eyelashes are also returning the same colour black. I am also covered in downy hair.
All the above symptons are nothing compared to the treatments I have been through and dont really cause me any problems but just wondered if this is all normal and other people who have had SCT have experienced the same?
Hi Shelleyyy, sorry for the delay but we have had a full house.
Sorry to hear you are having skin issues - I checked my diary and I had skin issues from day Day 85 - 157 post SCT. I was under my SCT Team for two years 8 months post SCT so my GP was not in control of my aftercare.
SCT Team put the skin thing down to GvHD and was given various steroid creams to treat each area. They also my Cyclosporin going until the skin improved.
It looked like nasty red rashes on various!!!! parts of my body including my face...... but the cream pushed it back turning into dry flaky skin then it just clear up. I went from the steroid creams to using Hydromol Skin Cream and Dermol Shower Cream (both from my SCT Team).
As I lost my hair three times my hair is now very thin with hardly any eyebrows and eyelashes......oh the joys, but no complaints from me.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
The only problems I had with skin post-SCT were GvHD related, which was quickly sorted out with steroids, and due to being nil by mouth for a month which made me very dehydrated, which was sorted out with topical creams. Yours sounds like it is going on longer than I experienced, so I really hope you get some good progress soon.
As to hair, yours sounds very similar to mine. It grew back curly after both times I lost my hair, which lasted a couple of months until it went back to its normal consistency. I was worried I was going to come back grey like my brother is going (he’s my donor) but it came back just the same as before. All other body hair returned to normal soon after also.
Hope your skin clears up soon.
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skin reactions are seemingly pretty common, are they trying you with any topical creams/ointments apart from Aveeno/ coal tar? Any steroid based creams? Do discuss the soreness with your team, as around the eyes can cause irritation leading to eye irritations.
Hair does grow back differently for some folk, daughter found hers grew back fairly normally after ABVD (her first line chemo) but much thicker and wavier after her auto, but it fined down more normally about a year later. After her allo it grew back much slower, in fact she did worry about how slow it was, but it came back as her ‘normal’ slow and steady.
Hope you improve steadily...
I never lost my hair until I had BEACOPP and when it came back it wasn’t my lovely strawberry blonde colour (ginger) but slightly darker. Then when I had my Auto last year it took quite a few months to come back and was certainly finer and was even darker. I never had any real skin issues during any of these treatments so was fortunate there.
I am now bald again following my Allo 7 weeks ago but already the hair has grown on my face and is pure white so I haven’t got a clue what colour it will be on my head but again it’s also really fine. I do also have dry skin this time which is worse on my feet but is not causing any issues so they’ve advised to put cream on. Another thing I’ve noticed is a constant ringing in my ears which is accompanied by the feeling you get when you are going up in a plane. I constantly feel I need to pinch my nose and blow to make my ears pop but when I do, nothing happens and it’s definitely affected my earring which is annoying but hopefully it will clear when I get off the Cyclosporine.
Thanks everyone, it helps to know that what is happening is pretty normal. I will talk again with my doctor and mention whether I should have steroid cream. No doubt that my skin problems will eventually righten itself but some other problem will take its place. Other than that I am feeling more like my old self and am getting my old fitness back so I cannot complain. I made a list yesterday of everything that has happened to me during my treatment and I almost ran out of paper!!! The human body is amazing what it can take. I cannot wait until I get the green light to start going on holiday again, my bucket list is sooooo long. Good luck to everyone on this forum xxxx
Enjoy the holiday planning - this will come round x
Sorry you're suffering! You still sound optimistic, which is impressive! I also quit wearing makeup because the skin around my eyes was so sensitive. Itchy skin all over was a problem for a while but after almost 2 years, its not bothering me anymore. Hope you feel better soon.
Thanks Alissa, I still have my skin problem. Its worse on my scalp and my new hair feels as though its stuck tightly to it but doctors not worried about it. I wil be starting to have my immunisations in a couple of weeks and I am quite worried as this will be at my G.P.s. As my immunity is still below normal levels I am not looking forward to sitting in a waiting room full of ill people but my practice says their nurse does not make house visits. I think I will be masked and gloved up when I go (lol).
when you get those immunisations, ask to sit away from others at the surgery, and yes, I tend to agree with the mask. Daughter too had to go to the surgery but it was ok.
The steroid cream definitely works and my feet have nearly cleared completely but they can still be a little sore.
With regards to wearing a mask I was told they were not very good and should go about my life as much as normal whilst using a bit of common sense. I am on day +59 and eat out, go shopping etc pretty much the same as before I went in for my transplant and have done since been discharged from hospital. I don’t know if I’m just pushing my luck but with three children in the house I feel if it’s going get me, it’s going to get me. Touch wood, but so far so good.
Hi Wendy, totally get your thoughts about the GP surgery, it’s the same with going into hospital clinics.
There is always a chance of picking up a bug especially in a GP surgery as it is full of sick people ;)
I would always go with clean handkerchief that had VIck or Olbas in it, over my mouth and nose. But my GP surgery were great and always arranged that I was taken immediately, even although they may have been running behind as they understood the risks - give the surgery a call.
My Heamatology and SCT Clinics actually had dedicated ‘clean’ rooms for those who were more at risk so we did not have to sit in the crowd.
My skin issues did not start until day 85 to 150 but creams did the trick for me.
You are doing great.
Actually, looking back. Two of my five stays in hospital post SCT can be conducted to catching infections from other people including my granddaughter - it’s just a lottery and some folks go though post SCT with no infections - but the average is 2 hospital admissions in the first year post SCT.
If I have to go to the GP - which I try to avoid - I am let in through the back door and sit in an empty room until my appointment. My consultant has told me to refuse to sit in the waiting room and insist on being kept separate.
My immune system is still very weak and I am still not revaccinated, 21 months post allo. I still wear a mask if I go into places that are busy with people and only rarely go out to eat if I have rung ahead, explained and asked if they can make arrangements - as far as possible - to keep me away from other people. Invariably this has been accommodated with sensitivity. I carry wipes to wipe supermarket trollies and dont touch chip and pin machines. I wash my hands frequently and carry antiseptic gel.
Fabulous service at the new Terrace Restaurant at RHS Wisley on Thursday. There is space between tables anyway, but they steered newcomers to the restaurant away from tables near me and reserved me a table tucked out of the way. They explained that they had cleaned the table extra carefully for me, too. Five stars for them!
I have not caught a single infection since my allo - other than one cold that I caught, ironically, while I was still a patient on the transplant unit and the flaming virus hung around, but without any symptoms, for 11 months.
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