Second chemo round

[J-girl]

For my first chemo I did Rituxan and Bendeka and was in remission for 2 1/2 years. My last appointment my doc told me it is time to go back on chemo and mentioned oral chemo. I am in the process of getting a lot of testing done before I go back to the doctor. I wondered what oral chemo most people start with and side effects I might need to watch for. Just losing sleep before my appointment so I want to be prepared!

[HopeME]

Hi J-Girl

Are you seeing a CLL Specialist? By oral chemo drugs are you referring to Ibrutinib? We need more information so to be able to advise you as to possible questions to ask your doctor.

[J-girl in reply to HopeME]

He didn’t mention the name yet so I’m assuming it might be Ibrutinib. I don’t know for sure though. I am going to a cancer hematologist.

[HopeME in reply to J-girl]

Hi J-girl

I’m uncertain if your “cancer hematologist” is a CLL specialist. I’d recommend that you find this out before settling on your next treatment option if at all possible. Ask him/her how many CLL patients they see. We have a relatively uncommon cancer with treatment options that are quite complex so it helps to have someone who specializes in CLL. If you aren’t being seen by a CLL specialist I’d recommend you set up a call with a CLL specialist through the CLL Society. My understanding is this program is available to all US citizens who aren’t presently being seen by a CLL specialist.

I also had BR for my first line treatment. I’m presently in remission but when I need a second treatment I plan to consider clinical trials. I think the time limited treatments that incorporate Venetoclax and Alcabrutinib are interesting. Inrutinib as a stand-alone treatment is certainly a good option although I think I would prefer alcabrutinib as it has less side effects.

Good luck with your upcoming appointment!

Mark

[J-girl in reply to HopeME]

Thanks!

[Naka]

J-Girl I hope you are able to see a CLL expert before settling for chemo. With all these targeted treatment out for CLL there is no need to stuggle through chemo. At the yearly LLS forum the CLL expert mentioned that he doesn't treatment CLL patients with chemotherapy anymore. Though he mentioned that 70% of patients out there not with CLL Specialist still are put through chemo across the US. Wish you all the best

[J-girl in reply to Naka]

Thank you. I am going to a cancer hematologist. I do know the first time around things went pretty fast with my hemoglobin and platelets dropping. I developed AIHA and had blood transfusions snd steroids during the treatment. I mail was just wondering what the first line oral medication I could expect.

[BallyB]

I was diagnosed in 2012. First chemo and Rituxan in 2016. Spleen removed in 2017 with additional treatments the following two years. Each time, the lymph nodes ballooned after about a year. I started oral treatment with Acalabrutinib about 6 month ago with excellent results. Blood is basically normal. The nodes were reduced in only 4 days after starting the treatment.

[J-girl in reply to BallyB]

That sound great! I will read up on Acalabrutinib.

[tola2222]

When my doctor mentioned oral chemo he meant chlorambucil (Leukeran).