New

Hi, sorry to read your husband has relapsed, there are a few with other types of lymphoma who have had Car-T cell therapy and it continues to improve as they understand it and the potential side effects much better now than they did when it was in the trial stage. 

Was it a slow growing version of mcl or an aggressive type? as this could inform this next step, I know from others who have posted they have had differing treatments so one question often asked is - is this the best treatment and the right treatment at this stage and why? plus are their options. Did they talk about Ibrutinib or one of the 2nd generation drugs as an option to help manage the disease?

I would also recommend joining this group as that's where many for the car-t cell patients have posted

https://community.macmillan.org.uk/cancer_experiences/stem-cell-transplants-for-blood-cancers-forum

we are here to help and offer support as and when needed

john

Gosh, thank you so much for replying. It’s so comforting to know we’re not alone.

The first MCL was slow growing, now, quite aggressive. They did mention Ibrutinib but this is also a BTK inhibitor, so they don’t think it would work any better than Loxo.

Thanks for the link.

M.

Hi again, whilst the mantle cell group can be quiet as its one of the less common types people do still post and reply to posts. I had a different type of lymphoma back in 2009 and have continued to post to share my experience and support others where I can as I appreciated the support and reassurance I received back then.

Back in 2009 I had rchop and 8 rounds of it so can hopefully offer advice once treatment starts.

Re treatment options back in 2009 rchop was the standard treatment for MCL, since then though the Nordic protocol seems to have become the go to treatment for aggressive types followed by a stem cell transplant, or in some countries the add etopiside to the rchop to make it more effective, R-EPOCH, may be worth asking about the benefits of any options re treatment if its not already been discussed. The option are though more toxic than rchop alone I believe, but again that would be part of any chat with the consultant.

Do keep us updated and whilst I am not as active as I used to be someone will be around to reply.

John  

Hi I am newly diagnosed. 62 years old and very frightened. The information is overwhelming. I have been told treatment starts next week with NORDIC.