Relapsed Mantle Cell Lymphoma--I'm new here!

My name is Gail and I am 66 years old. I was diagnosed with MCL in February, 2008 when I was 58 years old and living in Cleveland, Ohio. The only side effect I had were weight loss and swollen lymph nodes under my arms. I had HYPER C-VAD chemo with Rituxin and then had a stem cell transplant in October, 2008. I was in remission for about 4/12 years and then had appendicitis. The MCL was found in my appendix as well as some surrounding lymph nodes. Since the disease was determined to be slow-growing, we were watching and waiting for about 4 years with regular CT scans and checkups. My last CT scan in November showed that the disease has started to be more aggressive. I now live in the Atlanta, Georgia area and my doctor at Emory decided I should go on Imbruvica ( Ibrutinib) which is a BTK inhibitor that it is pill form. I started taking this drug(4 capsules a day). on December 14th, and after 12 days developed a rash over my entire body and my lips swelled. I was taking it in the morning, and was also very tired. I had to go off the drug and take prednisone until the rash went away. I started back on the drug after Christmas, but only 1 capsule a day. I took it in the evening, which helped greatly with the exhaustion, but after about a week, I have a rash on my arms and legs. Since the rash is not as bad as before, I am going to continue taking one pill per evening. I have an appointment to see my doctor in 2 weeks and if the rash is still there I may have to stop taking the drug.

I would love to hear from anyone who has MCL, especially those of you with relapsed MCL, and anyone who has had experience with Ibrutinib (Imbruvica).

I still have a lot of life to live and am hoping that something will slow down the growth of my MCL until a cure is found!

I know this was a long post. Thanks for reading my story and for any input you may have.

11 Replies

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  • My husband is taking the Ibrutinib as well at MDAnderson, and when prescribed it was suggest to take l-lysine (1000 mg), zantac (ranitidine), and zyrtec once a day as he was also getting a bit of a rash. This combination definitely addressed the rash. Also there are some great support groups for MCL on Facebook.

  • Thanks for your response. I will definitely ask my doctor about this. Does your husband take 4 capsules/day and at what time of day does he take Ibrutinib? I never thought to check Facebook for support groups! Thanks again!

  • Sorry, missed the question. Yes, he takes 4 per day. Had the rash; now has some a-fib so added a beta blocker. Otherwise things are pretty normal right now. Has a PET scan next week, we find out if that confirms remission. (ctscan last month looked good).

  • Hi! 3 years remission with mantle cell. Like you I hope to be here till a cure is found. I had rb, then rituxan over a 2 year period. Doing pretty well, just tiredand some chemo brain still. Hang in there.

  • Hi Jane!

    Did you have a stem cell transplant? (Not sure what rb is that you referred to.) I'm wishing you all the best--may you have a long remission!

    Gail

  • I'm going thru the same as Janekite2015 and finish my Rituxin this July 2017. Wishing you the best and I'm tired to and forgetful at times...

  • Hi Gail, My husband has Mantle Cell. He was diagnosed in 2011. Did R-chop and then 3 months later had a stem cell transplant (auto). He was in remission for 3 years and then came down with a case of shingles. We think that lowered his immune system so much that he relapsed. So last May he started Bendamustine/Retuxamab and finished the first of Dec. He is now in remission again. We are in Florida for the winter and have an appointment with doctors at Moffitt the end of this month. We are going to talk to them about going on a maintenance program. If he does it will probably be Ibrutinib. We also talked with the transplant doctor at Moffitt last week and he told us of a new clinical trial that is going on. It is called Car-T and it is where they remove your T cells and then re-engineer them and then transplant them back. It sounded very promising. Should be approved by the FDA soon. Keep in touch. Would love to hear how you make out with the Ibrutinib.

    Paige (moors3029@aol.com)

  • Paige, thanks for your reply. I have had shingles twice since I had the SCT, once about a year after, and just this past September, only 2 months before the CT scan which showed that my mantle cell is getting more aggressive. Thankfully, they were pretty mild cases.

    I am continuing with the Ibrutinib for now and just started taking 2 capsules/ day. My rash, which may very well be petechia, seems to be fading. Hopefully, no more side effects. The doctor said that I will likely be on Ibrutinib for the rest of my life, or as long as I can tolerate it and it keeps being effective. There is no data on very long term use at this time.

    I'm happy that your husband went into remission and hope it continues. I look forward to hearing how he does with Ibrutinib, if that is his next step.

    I have heard a little about CAR-T and it does sound very promising! I'm praying that they are getting close to a cure for this disease.

    Until next time,

    Gail

  • Hi, it's Jane. No stem cell transplant, but if and when it relapses we'll consider it as one of the possibilities. So far so good.

  • I am still in treatment for Mantle Cel until July with rituxin. I was diagnosed in April 2014. I am going to be 77 in March. I am Female and was told this is usually found in Males. I was stage IV since it went to the bone marrow. Have been in remission since Oct. 2015 after bone marrow biopsy again and Pet Scan. What happens after July 2017 am not sure... spleen was enlarged in beginning along with nodes from neck to groin. Had one node removed at back of neck for testing. Fatigue and feet neuropathy and finger tips are side effects for me, plus bad urine odor and my taste buds... most foods taste nothing like I want them too. I drink lots of water and ginger ale. Was not real nauseated after my R-Chop treatments. Those symptoms were controlled with medications.. Wishing you the best and a cure is found for you and all cancer patients.

  • All the best to you, as well!

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