lankisterguyVolunteer2 years ago

Hi Provence, -

I had a low level rash since 2006 prior to my 2008 CLL diagnosis. The dermatologists and pathologists always threw out many possible causes.

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Each time I was treated it got a little worse, but Ibrutinib 2015 really ramped it up to angry, red and itchy.

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My CLL expert had me pause Ibrutinib for 2 weeks and the rash went away (I had been taking Photo Therapy/ Light box treatments with UVB rays to reduce the symptoms). After a 4 week pause I restarted Ibrutinib but the rash came roaring back despite the Photo Therapy.

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So we stopped Ibrutinib and after 6 months I progressed enough to need treatment and we started Venetoclax in mid 2016.

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My CLL has been well controlled by continuous treatment with Venetoclax but I have just restarted Photo Therapy with a home unit to deal with the rash that has gradually gotten worse over the last 4 years.

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An expert pathologist that works with my CLL expert has narrowed the issue to T-cells that accumulate in my dermis and cause an autoimmune like psoriasis. Dr. Cynthia Magro weillcornell.org/cmagro says it is not yet CTCL but T-cell dyscrasia. My CLL expert attributes it to my refractory HHV6a viral infection.

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There have been many reports from our members of skin rashes attributed to Ibrutinib, if you paste this string into a Google search you can see many of them:

site:healthunlocked.com/cllsupport ibrutinib+skin+rash

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Len

Provence in reply to lankisterguy2 years ago

Dear Len, that is so helpful. Thank you for responding so fully. It teaches me to not just go along with the superficial approach to treatment of my present dermatologist . I already felt that l I need much more than this, because of the degree of discomfort I am experiencing all day long and because the rash is spreading, but now after reading your article I realise that it is also possible to have a serious dysfunction and that I need to make sure to get good expert support and guidance. The problem is that I live in a rural area of Provence where there happens to be a big shortage of dermatologists at the moment. I have been extremely grateful that I could find one at all, even though I have to travel for 1 1/2 hours to get to her. But I think I will try to discuss ( on the phone since he is always very busy as well ) with my haematologist and see what he says about finding another dermatologist more familiar with CLL.

In the meantime I am ignoring the instruction to put the cortisone cream only twice a day on the rash. It is just not possible! I put it on more often and use a anti-biotic cream as well ( this was not prescribed for this, but it helps a bit ) and am constantly plastering myself with green clay.

I will now go and study what has been said previously on this in the link you forwarded.

Thank you again,

Kunderke

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HappyCatUK2 years ago

Hi ProvenceAlthough I have not had any CLL treatment, I have Grovers disease on my central chest area and so I know how miserably painful it can be and I really feel for you, especially with the other rashes you're experiencing too.

I don't know if this is of any help to you...mine was diagnosed four years ago and the dermatologist prescribed hydrocortisone 1% cream and Dovonex cream on alternate days. After six weeks the area had virtually cleared up.

I have noticed that it seems to flare up if I have more sugar or wine then normal, so usually around birthday and Christmas celebrations, and sure enough it's been a bit of trouble these last few days 🙄. So then I use Eumovate ointment and also some simple Sudafed cream (for nappy rash!), try to keep the skin cool and cut back on the sugar and wine and it eventually settles down again.

Interestingly, when this was first diagnosed, I asked if it was connected to the CLL and was told no. But they also said that about the melanoma I had removed around the same time as my CLL diagnosis ten years ago, and we now know that CLLers are more at risk of skin cancers!

I do hope that you can get some relief from all of this and wishing you a much better New Year. HappyCat x

Provence in reply to HappyCatUK2 years ago

Hello HappyCat, thank you for your response. The Grovers disease is not my main problem but yes, it too can be really itchy and painful. I have been applying a cream called Betamethasone ( 0, 05%) twice a day since September and that stops most of the itching, although it does not heal the rash itself and new spots keep on developing. But I can live with it ( just about ) unlike the rash on my scalp. I will look into the creams you mention as well. Can I ask how often you applied the hydrocortisone cream per day?

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HappyCatUK in reply to Provence2 years ago

Well, I can't definitely remember and the frequency was not recorded in the correspondence from the haematologist, but I think it was twice a day every other day. Then after 6 weeks I had to reduce to twice a week and then tail it off completely as it cleared up. I'm sorry I can't be more definite about the daily application.

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Provence in reply to HappyCatUK2 years ago

Thank you. Have a Healthy and Happy New Year

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kitcat492 years ago

I am so sorry to hear that you are suffering like this. It sounds like your body is screaming at you....stop poisoning me. Is there nothing else they can put you on ?

Provence2 years ago

Thank you for your empathy. I am seeing my haematologist on January 27 and I imagine that he may take me off Ibrutinib. Of course I have mixed feelings about that since I have had such a good response in terms of the cancer, but for sure I cannot carry on indefinitely like this.

54542 years ago

I have the same rash on scalp and neck had 3 punch biopsy done results were both fungi and bacterial the fungal was cally malessia and it is yeast related . Bacterial was staphylococcus. which it appears to be something we all have naturally on are skin and I had problems before Ibrutinib but the medication made it so much worse . I still believe that CLL has something to do this but for know I have had some relief from ketoconosole shampoo 2percent daily and keep it dry you can buy Nizoral AD shampoo in stores or on line has 1percent .Derm also beliefs Ibrutinib plays in to it were avoiding steroids because of the fungal which can be more aggressive from steroids but what do I know he'll I'm just the patient oral antifungals are some what effective but don't play well with Ibrutinib. Seems like a rock and a hard place. Just sharing this in comparison to everyone and looking for anwers best of luck to you.

Provence2 years ago

that is great information, thanks a lot. I will go and try to find this shampoo. And maybe I should also have these punch biopsies. It is difficult however since everything is closed down due to Christmas and there is no way I can get in touch with any of my doctors now and next week they will probably also be very hard to get hold off. I am certainly going to try and get an appointment next week. In the mean time I will look out for this shampoo and any of the creams that have been suggested.

Josephine23312 months ago

I have been having trouble with rashes. I'm on the third different type. First I had A very scaling rash, second I had a very, very itchy type, this has morphed into something that looks like I've been scalded. Skin very rough. Dermatologist put me on prednisone the first time, eventually it went away. This time only on steroid cream. It isn't helping. Suggest my hematologist discontinue imbruvica. She did so reluctant ly. Dermatologist took biopsy to hopefully see what it is. Tired of dealing with this type of thing.

Provence in reply to Josephine23312 months ago

Hello Josepine233, I am so sorry to hear of your awful rashes. It must be an ordeal!But I feel I should also tell you what happened to me after that post more than. 1 year ago. My haematologist reduced my dose of Imbruvica to 140 mg a day and I am still taking that dose now with good results. It has proven to be strong enough to manage my CLL. I was also given daily anti-histamines and took those for 6 months. They worked and the rash subsided quite quickly. After 3 months I tried to reduce the anti-histamines and that did not work, the rash started to come back and I had to go to the previous dose of anti-histamines. But after another 6 months, I was able to stop with the anti-histamines altogether and have not had any skin rashes since.

I hope you too can find a way to manage these awful rashes whilst continuing with a treatment.

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Josephine23312 months ago

Thank you for your input. I am also on antihistamines, although they aren't doing anything.