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

[Gail2050]

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.

[kgrant1741]

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.

[Gail2050 in reply to kgrant1741]

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!

[kgrant1741 in reply to Gail2050]

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).

[Janekite2015]

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.

[Gail2050 in reply to Janekite2015]

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

[Judyhoneycomb in reply to Janekite2015]

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...

[moors3029]

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 ([e-mail])

[Gail2050 in reply to moors3029]

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

[Janekite2015]

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.

[Judyhoneycomb]

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.

[Gail2050]

All the best to you, as well!

[pollyg2016]

Hi Gail, My partner has relapsed with MCL and has just been prescribed Ibrutinib. He is 59. He was in remission for about 3 years after having stem cell transplant and we hoped it would be longer. He had check-ups every three months, was putting on weight and looking fit and healthy. it was his last two check up that the doctor noted that his WBC was rising. We thought it could be because he's had to take antibiotics twice this year for bad sinus/colds and he had just had a flu jab. The hospital redid the blood tests and said it was still rising very quickly and that his platelets were dropping. They suggested he start taking Ibrutinib straight away before he developed other signs of MCL (tiredness, sweats, weightloss). So he's been on the tablets for one week so far. He has one reaction so far, when he ate something he didn't know had oranges in. On our information sheet it says to avoid Grapefruit and Oranges. He didn't realise he had eaten something with oranges. He started to shake very badly and his hands went numb. This went on for an hour, but then subsided. He also takes 4 tablets a day. He has started to keep a diary to chart his progress/allergies/symptoms. I know that everybody will react differently with the drug and there are numerous side effects that people may or may not get and that they don't always state in the Ibrutinib pharma literature. I thin that as long as you keep a note and let your doctor know as soon as possible, hopefully they will have a remedy. I have also been told that MCL is now classed as a "manageable" cancer, a bit like being a diabetic - something you have to manage for the rest of your life. To us, we think that's better than the alternative.

[Mik_]

Hope you still doing well.

[pollyg2016]

Hello Gail, My husband was diagnosed with MCL in 2004. We were back in the UK at this time (we are from UK but life in France). He really went through the wringer! On first treatments Black tongue, allergic reactions, complete body rash, fatigue, thrombosis of his arm by PIC lines. They first thought it was Lymphomia but then realized it was MCL. After various treatments he had a stem cell transplant. He was then in remission for about a year. Then he relapsed again. He was given Ibrutinib taken 4 x a day and had about 4yrs good health. During this time, he was going back to the UK every three months for check ups and get more Ibrutinib. It was great. He then relapsed and the doctors said his options were getting limited. They wanted to give him the new CAR-T therapy, but the hospital just couldn't afford it, in the end his doctor encouraged us to move back to France with a chance of other treatments. We then moved back to France and immediately he was put on chemo again, Rituximab and Bendamustin (spelling?). He was on that for 6 months and the doctor realized it wasn't working. At this point the French doctors suggested he be put forward for the new CAR-T cell therapy. We'd read about it a few years ago, but were anxious because of the severe side effects (including death). I did a lot more research and realized that things had moved on and they had tweaked the treatment so the side effects were minimal. It pains me to say, but the health treatment in France is far superior to the UK, in terms of speed of treatment and treatment itself. After a few anxious months he started his treatment in October 2020. He was due to stay in hospital for 4 week - 2wks for treatment, 2wks for rehabilitation. He was put in a sealed, isolated room and only seem by doctors and nurses. I was not allowed to visit. Once the new modified cells were injected back into him, he was monitored 24/7 and given cognitive tests 3xtimes a day (one of the side effects - memory loss, loss ability to recognize and loss of writing ability), He lost his hair and beard. At one point he had a fever and had to go to ICU. Unfortunately, when he came back to his rehabilitation room he was tested positive for COVID!! No one had any idea how. He had absolutely no symptoms whatsoever. Then he also got an infections in his PIC line again and had to be put on antibiotics. This all delayed his returning home. Then he was tested for Covid again and it came back negative. We have since heard that people having CAR-T cell treatment can sometimes test False positive. After 6 weeks He was allowed to come home, and for the first 10 days had to have a nurse come to the house to administer his antibiotics 3 times a day - 7am, 2.30pm and 11pm!! He's has since been back to the hospital for a PET scan and had his "one month" check up and has been told that he is in, what is called "partial remission". There is no visable signs of the cancer!! This is a long , long recovery process, at least 6months/1yrs. He still has to have blood transfusions and plaquet transfusions, but, fingers crossed, this will get less and less. In a few weeks, he will have his "two month" check up. If you can look up the CAR-T cell therapy and talk to your Doctor, you might be eligible for it. Very good luck to you