BODY CHANGES

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.

((hugs)) 

Hi Shelley,

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.

Greg

Hi Shelley,

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...

hugs xxx

Hi Guys,

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. 

Regards

Mark

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).

Wendy

Hi Shelleyyy/Wendy,

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. 

Hugs xxx

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. 

Regards

Mark