I’m a 35-year-old male who just finished my 2 year maintenance for T-ALL. I stopped taking 6-MP and methotrexate two weeks ago, and since then, I’ve developed a pretty bad facial rash along with a rash on my chest, neck, and arms. I also have very red eyes.
Has anyone else experienced something similar after stopping treatment? How long did it take to clear up? Any Advice?
My oncologist mentioned that an “immune rebound or response” after having a suppressed immune system for three years. But didn’t give me any advice other than wait it out.
Just looking for insight from others who’ve been through it.
Hi @zbove welcome, I hope others may be able to share their experiences for you.
Perhaps this is a very good question for your specialist nurse and ask if they can offer any help.
Waiting it out sounds miserable to me and I am always worried about my eyes.
If your specialist nurse cannot help perhaps you GP might be able to or your optician.
Look after yourself and please do let us know how you get on.
@Erica , thank you so much for your response! I’ll definitely press my nurse for more info. They also mentioned that if my eye issue doesn’t resolve, to go to an optician. Hopefully someone here might be able to share a personal journey as well! Very kind of you to reach out!
Hi Z, I have marginal NH Lymphoma, had 4 rituximab and 2 rituximab+bendamustine in december 23 janunary feb 24 and they stopped because i developped a very severe rash in legs arms, face. Wihin skin 9 biopisis they discovered afer one year on much pain, I have sweet syndrome. Treated by a dermatologist but with no sucsess. Now i am with Zanubrutinib for two months with a variety of side efects, buy the skin improved. Mi oncologist thinks the same than yours : ¨an immune rebound or response¨and asked me yesterday to interrupt Zanubrutinib for a week. The skin rashes make life very difficult, i use to relief symptoms with ice patches, and topic corticoids. For headaches Ice also worked for me, Havent find yet any relief for the eyes. I hope others may be able to share their experiences for you.
Hi @Janine welcome to our forum and thanks for sharing your experiences.
It sounds as if you have had a lot going on and that it has been really difficult for you.
The Blood Cancer UK support line is there for you if you need it on 0808 2080 888.
Be very kind to and look after yourself and I find that this is a good space to say how it really is for me.
@Janine, Thank you so much for sharing your story with me. It feels really nice know that your not alone. It sounds like you’ve had a tough journey. I have recently felt the weight of being treated for Leukemia for the last three years. Its been so long, I’ve forgotten what life felt like before cancer. Anyways, I will look into getting a skin biopsy, that is really good advice! Thank you <3