Chronic Itching Post-Auto Stem Cell Transplant (ASCT) for Hodgkins Disease

Hi again James and so sorry to hear that this is still going on.

I am safe to say that in the two years I have been on the site I have not come across this. As you know I had skin NHL and my Allo SCTs have done a great job but over the past 3+ years I do suffer from a skin fungal infection in some delicate areas but nothing like what you are describing.

I think you said that this had been biopsied and that there was T-Cell infiltration into the skin...... this, at its basic level, was what my Cutaneous T-Cell was. Are you being seen by a Dermatologists? Have your team any plans to recheck this with a biopsy?

I don't know if you did this but you could also send your question to Jane our Heamatology Nurse who has experience in SCT Link

Lets look for anyone who has been sitting in the background looking in to come along with somer help. 

Hi, James,

yes I suspect you’ve been left a) with a sensitive skin after the HL and b) post-chemo itchiness.

i hope it settles, but guess it may take some time and treatment; might a dermatology referral from your team help? Plus maybe rather than steroid tablets, a steroid cream/ointment be more specific onto the skin? 

Hugs xxx

Mike,

Many thanks for the reply. 

I have been checked for T-cell infiltration and, while I can't recall exactly what they advised, it wasn't determinative.  

I have seen dermatologist and tried a number of things from topical lotions to UV light treatments - all to no avail.

While my skin is slightly red, the itch is really seems to be coming from the inside (rather than topical), which leads me toward endocrinology (they couldn't help) or something to do with the gut or maybe its just a GVHD issue between my old and new immune systems, however rare that may be.  However, after 2 1/2 years post-ASCT, I would have thought that it would have resolved itself by now (after all, the transplanted cells are mine!).

At this stage, I need to revisit everything to see if we missed something so I'll check the T-cell assessment again.

Hope you're well.

Thanks,

Keith

Hi Moomy,

Thanks for the thoughts.  I have seen a few dermatologists and topical relief helps for  very short periods of time only and I sort of have to cover my entire body multiple times a day to have even a brief impact so it's just not practical. 

Whatever is causing my problem, it seems to be an internal problem rather than something that can be attacked topically.

There is one new oral anti-excema drug (Dupixent) that I am looking into (its wildly expensive) and a process called ECP that I am also investigating.  So there are things to explore...however remote.  ECP is for severe skin issues with allo stem cell transplants.

I'll let you guys know if I find a solution.

Best,

James

Hi Keith, after all you have been through this is so frustrating for you.

As you say, it’s all about working through the known triggers that can develop skin issues. I am sure you have, but have you been checked for gluten and other allergies. A good friend who has lived with very bad Psoriasis, she spent a year working through all known triggers like gluten etc and the difference is amazing.

All the best.

hey,

I have been tested for gluten (although its recommended to do that a few times as there are often false readings) but I haven't had a full allergy panel, which is definitely something I need to do.  

Good nudge.

Tx,

James

Hi Mike - The Highlander

It turns out - after about 3 years of searching - that I have CTCL, which you suggested above. 

We had looked for CTCL a couple of times through lymph node and skin biopsies but couldn't really pin it down.  I'm not sure where the 'miss' lies, but it's academic at this point. 

I was doing ECP - until coronavirus stopped it - and now I'm on Bexaroteen.  I am supposed to add Interferon at some point.

I read your history. Quite a journey.  I hope you're doing well.    

Any advice beyond what you've got in your very helpful history?

Best wishes,

James

Hi again James well there you are then and as you will have read it took a good year, a couple of CTs and 6 biopsies to get my CTCL diagnosis.

Yes doing very well and rather enjoying the lockdown!! ..... getting lots of stuff done around the house that was put on the back burner during treatment.

But this is rather confusing, did they get your initial diagnosis wrong or have just been very unlucky and developed CTCL as they are rather different types of Lymphoma.

I never had ECP and this is also often used for Skin GvHD following an Allo SCT.

Bexaroteen was initially very effective BUT make sure they are checking your Cholesterol and Thyroid every 4 or so weeks as it can have a very bad effect on these....... also you MUST take the Bex with your main meal....... learned the hard way and I was very ill.

Interferon is very straight forward and also effective as it cut the blood flowing through any skin tumours.

No more to say at this point but you will have seen the main thing that did the job for me was a lot of Radiotherapy and Allo SCT.

Happy to answer any questions 

Mike,

You've asked the right question.  I think that I've just been very unlucky and this is in addition to the Hodgkins (typically a B cell lymphoma) although it is not entirely clear to me that the Hodgkins wasn't misdiagnosed.  Apparently the Reed Sternberg cell (Hodgkins) and the CTCL cell have a very similar morphology.

Most of the patients at ECP were allo GVHD patients.   I had to stop before we could tell if it was helping due to coronavirus.  I am hoping to restart in June assuming things start to normalize at the NHS.  

We are checking my blood weekly and are very focused on the cholesterol and thyroid. I started Bex at 300 mg and we plan to go to 600 mg assuming the bloods support that.  I'm glad to hear that it was helpful.  How long did it work for you?

I'm sure I'll have more questions in due course.  I don't know anyone with CTCL at this stage. 

I guess these notes go into your email as well as being posted here.  

Glad to hear you're well.

James

I think I was in Bex for about 2 years before we had to reduce my dose as my Cholesterol went through the roof and my Thyroid was closing down and this was when my tumour on my forehead went out of control.

But up until then I did not have any other treatments including light treatments. We did try using the Interferon to control the tumour but it just went crazy....... so had to get the Radiotherapy zaps.... the rest is the story you have seen.

The maximum dose of Bex is weight related - my maximum was 800mgs - these were hard to get down as they are not the smallest capsules

Remarkably there is another man in Inverness who I first meet at our Maggies Centre monthly Heamatology Support Group has CTCL. My Heamatology/SCT Nurse Consultant could not believe it when he said he had the same condition.

He has followed the exact same treatment journey I had in 2015 having an Allo SCT and so far he is doing great.

Yes, I have indicated that I receive email notifications every time someone posts in the groups I look after - you can do the same just have a look around for the selection tool.

Always around to talk and help out - stay safe.