Questions & Answers

We stopped my treatments and still my numbers will not go high enough. When the numbers go up they tend to fall the next week. I can't see what I am doing different from week to week.

Other blood work is close to normal and only slight signs of cll.

Looking it up on the internet, it doesnt seem very effective, and it looks pretty toxic, so I would love to hear from anyone who has had any experience of this drug, or any alternative treatment, for double-hit lymphoma.

This challenge is from the LLS and raises funds for patients to get financial assistance for the expensive medications and cover the patients copay. My first grant for 5 months paid the copay fully but has run out and it’s been hard to get more $$ for my BTK blocker ($3,550 per 1 month of the pills is my copay) after my Medicare pays the other 2/3 of the cost. It means that after tomorrow, I run out of this main medication while still locating new financing. So I’m gathering pledges to climb the… read more

I was diagnosed with stage 1 b CTCL Mycosis Fungoides Nov. 2017, started methotrexate Dec. 2018, and am in remission since early 2023. They say you never really get rid of this type of lymphoma; you'll die with it, not from it. So, on average, how long do people stay in remission?

Has anyone any experience of RCEOP and any advice or information please? Dad can’t have RCHOP due to pre existing heart failure. Thanks x