Hi Phil,

I am praying for good news for your PETSCAN results. One of the things I love about this site is that people who are currently going through this share their experiences with others. You can ask a question without judgment I am still learning what's going on. I wish you peace and good health.

Rachel

Hi Rachel:
Thanks for the reply. I agree, being sick can be very confusing. It really helps to have a doctor who explains things to you, but I've had rather bad luck in that department, which is part of why I feel so ignorant. Well, I had blood work done the other day, and I've already gotten back the results, which were excellent. I figure if that's the case, how bad off can I be? I hope to get to the bottom of the enlarged lymph nodes issue when I have my PET scan on the 12th.

I really enjoy communicating with you, and I hope we can keep corresponding like this. Take care.
Phil

Hello Rachel, I was diagnosed with MCL, stage 4 but slow growing in September 2021. In November 2022, I had 4 weekly treatments of Rituxan with mixed results. In December 2022 I began a series of 4 monthly infusions of BR which produced complete remission. In April 2023 I began a 2 year maintenance regime of Rituxan infusions every two months. Now, as of June 2024, just over 1/2 of the maintenance therapy period, I am doing well. There has been no mention of supplementing my treatment with a pill.

Good luck and God Bless,
Angus

Hi Becky:
I've been on a pill which is called Ibrutinib (trade name Imbruvica) for a little over two years. I've never heard of Zanibrutinib, and I don't know if that's different from Ibrutinib or not. In any case, I take two tablets, 280 mg. each, every night. I have yet to experience any symptoms, however, an MRI recently showed an increase in the size of two lymph nodes where the MCL was found, and a similar increase was found the previous year. These MRI's were ordered by my urologist for prostate screening, and the doctor felt that my oncologist should be aware of these results. I will be getting a PET scan in a couple of weeks, which will tell us more. I just hope it doesn't turn out to be really bad.

I am very interested in this discussion. I was diagnosed with Mantle Cell over 18 months ago but haven't started treatment yet. I know MCL almost always comes back and the 2nd line of treatment is often a BTK inhibitor. I am going to ask my oncologist during my next appointment whether it makes more sense to hold the BTK inhibitor in reserve for the inevitable relapse, or use it in the front line to get a longer remission.