MsLockYourPostsVolunteer5 years ago

lankisterguy - I hope he picks up on your post. He has had all kinds of skin issues related to treatment.

PaulaSVolunteer5 years ago

Hi Art,

I was sorry to hear about your rash. I can empathise, because I too have had problems with rashes.

The first one started a few months after starting Ibrutinib. It was on my face - red/brown blotches that looked strange but weren’t itchy. After being prescribed a steroid skin cream and reducing my Ibrutinib dose from 3 or 2 capsules, it faded away. But it’s left some small brown blotches that can look as if I haven’t washed my face properly.

The next rash started a couple of months after the first one, and appeared a few days after I started taking Co-Trimoxazole (as a prophylactic antibiotic).

This rash was much worse, with lots of raised red spots on my arms, neck and shoulders (but not my face). The itching was so bad it would sometimes keep me awake at night. My whole left arm became red and slightly swollen. It was hot to the touch, and we wondered if I was getting cellulitis. However, after stopping the Co-Trimoxazole, it very slowly (over about 6 weeks) eased off.

I was not on Gazyva, like you are, and our situations are somewhat different. But I can understand your frustration and relate to the way your rash interferes with quality of life, especially as you think towards your son’s wedding in October.

I do hope you find some answers soon.

In my case, the worst rash seemed to be prompted by adding an antibiotic to the equation, and I wonder if you too might be taking any other medications that are adding to the problem?

I also noticed that going out in the sun made things much worse – even though I covered up with long sleeves and a big hat, and used sunscreen. I’m still avoiding the sun as much as possible, which has been rather sad this lovely summer (in the UK).

Do let us know how you get on.

Wishing you well,

Paula.

Art2018 in reply to PaulaS5 years ago

Thanks Paula you are very kind.

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mnmnewtons5 years ago

I had THE RASH too. Not pleasant, almost debilitating. I went to Zydelig and did well for over 15 months. Acalabrutinib must be on the horizon soon and may not have such off target effects.

Art2018 in reply to mnmnewtons5 years ago

Thank you for your input. I have read that Acalabratinib brings the same problems as Ibutinib. They have the same composition. Venetoclax is one of my docs consideration if I need it in the future. Good luck and goid health.

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bhayes845 years ago

I had blistering rashes appear 7 weeks after staring IB at 280mg/day. After pausing it four times and even trying IB at 140mg/day I and my oncologist gave up on it. He prescribed Acalabrutinib / Calquence, it was approved under Medicare part D and I'm now waiting to see if I can get assistance to cover the co-pay (I haven't seen how much it is but I know it will be high). It's only approved for MCL, not CLL, but a phase I/II safety study was completed last year and phase III studies are under way. More than a few doctors are prescribing it 'off-label' for patients that fail on IB. A few members have posted on here about their success with it.

It's probably worth discussing this option with your doctor.

Good luck with your future treatment and the upcoming wedding.

Bill

Art2018 in reply to bhayes845 years ago

Thank you for responding. Please keep us up to date on your progress. Best of luck to you.

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skinkade5 years ago

I wish I had some answers too as i started getting a rash on my forehead during Gazyva treatments and it has continued to spread throughout my body even though I've been off treatments for 18 months. The conclusion is that the lymphoma and or treatment has changed my immune system and I am allergic to many substances that I wasn't previously. I've used so many topical drugs that help a bit but I'm itching constantly. The docs say that this is not common with lymphoma, but what I'm hearing is more and more of us are dealing with itchy skin! It's definitely a quality of life issue for me.

Art2018 in reply to skinkade5 years ago

Thank you for responding. I'm so sorry to hear about your rash.

I don't know the answer to all this. When I had FCR nothing like this happened.

My doctor also talked about Cart T cell . I want to wait until they improve the outcome and then go to Philadelphia to have it done.

Good luck to you and keep me posted about your health.

Ro

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skinkade in reply to Art20185 years ago

Thanks, I'll likely be starting a Bendamustine Gazyva treatment soon so it will be interesting to see what that does. Thx!

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