CLL & PLL: Long-term treatments and management question

Posted by northbay @northbay, Mar 30 7:19am

My husband was diagnosed with CLL. He had a white count over 750,000. He had chemotherapy for it and he responded well to treatment. A year and a half later the CLL transformed into Richter’s Transformation. He was given chemo yet again. A year after that he required an aortic valve replacement. And now 1 year later a lump on his neck on his lymph nodes turned out to be PLL or prolymphocytic leukaemia. The drug the doctor recommended was not an easy one for my husband as he was told he would have to take it for the rest of his life. He did research and found a research paper that suggested that anti-histamines have a positive affect on the cancer. Does anyone know anything about this as he is taking Quersitin and Claritin. He’s running 5 miles a day every 3 days.

Hello @northbay. Facing multiple diagnoses at different stages must be frustrating for both you and your husband. I'd like to invite some members who have talked about CLL & B-PLL in the following discussions from the Blood Cancers & Disorders group:

https://connect.mayoclinic.org/discussion/cll-referral-to-cll-specialist/
https://connect.mayoclinic.org/discussion/chronic-leukemia-terrified-bc-i-cant-tolerate-chemo/
https://connect.mayoclinic.org/discussion/b-pll/

@cormac, @81ue, @stuartg, @pecorara, @shaker1956, @jvertalka, ad @lesliem7600 have all discussed in those discussions their experiences with CLL and/or B-PLL and may be able to share some insights with you. @northbay, it may be helpful, if you are comfortable, to share what your husband is being prescribed for his long-term treatment that you are worried about how he will tolerate it?

REPLY

Sorry -said he wouldn’t be able to drive.

REPLY

The drug was ibrutinib

REPLY

I tried to say that my husband’s pharmacist told him he would become severely confused, wouldn’t be able to drive, have physical symptoms that would be extremely unpleasant and he was supposed to take the drugs for the rest of his life.

REPLY
@northbay

I tried to say that my husband’s pharmacist told him he would become severely confused, wouldn’t be able to drive, have physical symptoms that would be extremely unpleasant and he was supposed to take the drugs for the rest of his life.

Jump to this post

Please look at the data from Ibrutinib. I was on it for a short period, but discontinued after I developed pneumonia. I will probably go back in Ibrutinib after a complete recovery from pneumonia. I had very few side effects and know others that have had very few side effects also. There is a lot of promising trials and evidence on Ibrutinib. Please do some research on this drug, you might be surprised. Best of luck🙏

REPLY
Please login or register to post a reply.