MANTEL CELL LYMPHOMA AND IBRUTINIB

[pollyg2016]

Hello, I'm new to this group and wanted to find answers to concerned questions. My partner had been diagnosed with Mantel Cell Lymphoma three years ago. He underwent Chemo and stem cell treatment. Recently after a routine blood test, the doctors said his WBC was rising rapidly - it's doubled in the last two week to 80% above average. His platelet count has also started to drop. He looks and feels great, has been putting on weight and is not experiencing any symptoms he had when he was first diagnosed (sweats, fatigue, gaunt look, enlarged spleen). His doctors said they want to put him on Ibrutinib straight away before he starts to feel unwell. He had a Scan and we're waiting for the results, but the doctors said that regardless of the results, it doesn't matter anyway because his platelets are dropping. Has anybody had experience with Ibrutinib and what are the side effects. I understand that they are different for everybody. My partner is 59, 11.5 stones, doesn't drink or smoke. We both thought that with having stem cell transplant his time in remission would be much longer, so we're surprised that he seems to be displaying high white blood cell count. His immune system is weaker and he catches colds easier. He's had the flu jab and had been on antibiotics twice this year for cold and sinus infection. His doctors doesn't think this makes any difference to his high WBC. Any thoughts? Many thanks,

[Judyhoneycomb]

Hi Pollyg2016, I am a woman age 77 and was diagnosed with Mantel Cel stage IV in 2014. I was told women it is rare for women to get Mantel Cel... I did not have stem cel transplant because I'm too old. My spleen also was enlarged and Have chronic hiccups... All my nodes were enlarged and affected from neck to groin. I did go thru R=Chop chemo treatment and followed up with Rituxin infusions every 3 months. I did that for 2 years 3 months. I had early bone biopsy and it was in the bone marrow which put me in stage IV. I am so sorry I don't know anything about the treatment Ibrutinib,... However, I am in remission and the Rituxin kept me there. I have terrible neuropathy from the R=chop chemo, and get fatigued very easily. I return in Jan. 2018 for blood work.. Wishing you and your partner the very best and may he return to good health. I am in Iowa, USA...

[pollyg2016 in reply to Judyhoneycomb]

Hi Juddyhoneycomb, Thanks so much for your response. My partner also did the R=chop chemo treatment and we thought it was the worst thing. We hadn't reckoned on the Stem Cell transplant, it was the worst thing he's ever had to go through. In isolation for 4 weeks, it was heartbreaking watching him go through this. I think we falsely/hopefully thought he would be in remission for a lot longer than 3years. Recently his blood tests revealed his WBC was sky high and platelets falling. The Doctors suggested he try this new drug. The doctors says that things have improved dramatically for Mantel Cell and that he wouldn't have to go through Chemo again. Hence, they are now prescribing Ibrutinib. We are very lucky to have the National Health Service in the UK, so treatment is free but I understand it costs a lot of money and it's not available to everybody, which I think is so unfair. We are crossing our fingers that this will keep him in good health and stable. I wish you all the best for good results in the New Year.

[Judyhoneycomb in reply to pollyg2016]

Thank You so much. I still have my port in place for infusions if mine comes back. My oncologist wants me to keep it he said until 2018, so in Jan. I guess we will find out if it will be removed. If my treatment is thru my infusion port it isn't as expensive. But all my mouth prescriptions seem to be a co-pay for me. So I hope the doctors are correct in treatment of this strange cancer. Your partner is so lucky to have you by his side. It is hard to be a caregiver, and we that have to ask for help are humbled to ask and receive the help.... take care of yourself as well dear...

[pollyg2016]

Hello folks, Another question. What is the situation with drinking alcohol whilst on Ibrutinib? Can my partner drink low alcohol beers and wines and ordinary wines? Asking as it's coming up to Christmas and he might fancy the odd glass of wine with Christmas dinner! What about other spirits, whiskey, vodka, gin? He's not a big drinker since being diagnosed but would like the odd beverage. Many thanks,