Mantle cell lymphoma

[Janekite2015]

Dx five years ago, rchop and retuxan follow up. What have others experienced? Dr. doesn't say much so I have done a lot of research at major medical center websites. Would like to connect with others.

[krayburn Partner]

Hi Jane! Glad you could join our community

[Landec1]

Hi

My husband has MCL, he's had R maxi chop followed by a stem cell transplant, relapsed 6 months later with localised disease in lymph nodes to neck and received radiotherapy, shortly after finishing this the lymphoma became systemic again, he's now started ibrutinib and is doing well at the moment, I understand it doesn't work forever so fingers crossed for the future, this has all happened within 18 months so if you're 5 years down the line you're very lucky. Wishing you all the best for a healthy future.

Claire

[Janekite2015 in reply to Landec1]

Thanks. I know I have been very fortunate. Good luck to your husband and take care of yourself. I was a care giver when my now deceased husband had lymphoma and it's wearing for you too.

[Reem-ayoub in reply to Landec1]

Hi Claire, my husband has indolent MCL . He is 49 and strting treatment in a week. We still need to see if his biopsy can be tested for SOX11 which could determine if he transplant is necessary. May I ask the age group of your husband? We live in Lebanon and our doctors are divided between US vs European approaches. So Bendamustine Rituxan vs RCHoP. Would like to get as much info as I can.

Thanks!

Reem

[Landec1 in reply to Reem-ayoub]

Hi Reem

I'm sorry to hear that, my husband was diagnosed at 61 although I suspect he'd had it for some time as had vague symptoms for about a year. He is currently taking ibrutinib and is well at the moment, unfortunately the transplant didn't work for him, the success rate in uk is about 60%, so we were hopeful, it seems to be the only hope of complete cure, I tried to get my husband on a trial with ibrutinib and lenalidomide which they believe helps to stop the resistance to ibrutinib which eventually develops, unfortunately the trial had already closed by the time I found it, our Drs believe this is a good combination but not available routinely in the uk, transplants are only available to the very fit and even then there is a 1% death rate in the uk, so not to be taken lightly, it is a gruelling regime, the hope of a cure I suppose makes it worthwhile. I wish you all the best for the future, for your husband also, it's tough for wives too, I don't think people realise that. If I can offer any advice please let me know.

Take care

Claire

[C180ji]

Hi, I'm new I was diagnosed with MCL Jan 2014 I really don't now anything about the illness. I go to the hospital at first every 4 months blood weight and check up now every 6 months watch and wait no treatment yet. Plenty of juicing eating organic filtering my water having Epsom salt bath to get rid of as much toxin in your body I'm trying to help keep healthy 🍀

[Janekite2015 in reply to C180ji]

Well, you're lucky. You're in the "Watch and wait" group. If you go online to learn more about the disease just don't be freaked out by everything you read. Just found a twenty year survivor! Good luck.

[Janekite2015 in reply to C180ji]

I think that helps. I switched to a plant based diet still have a little dairy and eggs, gave up sugar and alcohol. I babysit for my 3 year old granddaughter and that keeps me active and happy. Search the internet but be careful to stick to places like mayo clinic, cleveland clinic etc. Good luck!

[C180ji]

Thank you, I know thinking positive about life helps. I have 7 grandchildren that I would like to see became adults that keeps me going too. I hope the best for you and all with NHL 🙏 For a cure X