Hi Everyone, haven't been here for ages. Misdiagnosed with CLL in 2014. Turned out to be MCL/CLL hybrid. Auto SCT May 2016 which held 'til now. Just started on Ibrutinib.
Very excited about this:
youtube.com/watch?v=SZlvJbC...
Potentially, more effective than CAR-T and less invasive.
Regards,
zentangle
Hi Zentangle, My husband was diagnosed with MCL in 2014. He's completely been through the wringer! Remission lasted 1 year then relapse. He was on various other drugs after that, caught numerous infections and reactions. He was put on Ibrutinib and was on remission for about 2years. Then, unfortunately that stopped working. He was then on Bendamustine and Rituximab for about 6 months, this also did not work. He was then offered CAR-T therapy (which we were apprehensive about because of the potential severe side effects). After being in hospital for 6 weeks - in isolation, (where he also caught Covid-19!) he was finally allowed home, but also caught an infection from his PIC line so had to have strong antibiotics for 10 days at home. We were so hopeful but after his 2nd month check up he started to get pains in his spleen, it was found out that the CAR-T treatment didn't work!! To say we were upset is understatement. So basically, it's back to the drawing board for us. He has started having a more aggressive form of chemo (3 days on, 21 days off), for the next six months, then the Doctors want to try another form of therapy. We are very pragmatic about it all now. We don't know if he will be cured and his condition will just have to be managed at the moment. So we remain hopeful that each day will bring more new treatments and advancements in medicine. I wish you the best of luck in your journey. Stay safe.
Hi Polly, what an experience you have both had! Have the doctors said no to a donor transplant? Or a second CarT? What chemo is he on now?
This must all be ver worrying for you. Wishing you all the best. Write back soon,
Stephen
zentangle
Hi Zentangle, My husband's doctor has never mentioned a donor transplant? Can you tell me more about it? I did ask if he could have another and if there was a second Car-t treatment and he said no. Saying that I have since heard of other Car-t therapy through a facebook page called: Changing Gears - Still fighting after CAR-T. The chemo he is having now is: Rituximab, Oxaliplatin, Dexamethasone, Aracytine (I'm not sure if spelling is correct). He had his first treatment last week and had to be rushed to hospital on Monday as his platlets were very low, so he had a plaquette transfusion. He's still feeling under the weather, he should be feeling better after a week. Personally, I'd like to go back to the Doctors and ask more questions, but my husbands just says they know what they're doing. In the end of the day, it's his decision. I like to ask questions, my husband doesn't, which has been a big source of arguments for us!! If you don't mind I'd like to hear more about Donor Car-t and what it entails.
Hi Polly, just a couple of questions: where are you and how old is your husband? The reason I ask is because different things are available at different ages. Generally, you can’t have a transplant after 65, but some people do. How fit is your hubby now? Write back soon. Steve
Hello, my husband is 62 and is very fit. He's also lost a hell of a lot of weight over the years due to loss of appetite etc. Plus he's lost muscle mass of is basically skin and bone 
He was diagnosed in Liverpool initially (he's a scouser!) but in the end the hospital couldn't afford to give him the CAR-T treatment. We live in France permanently and as soon as we got back we went to a Cancer centre, who began treating him.
Hi Polly,
Good to hear that your partner is very fit, despite losing some weight. As he is under 65, he is technically eligible for an allogeneic stem cell transplant. This is a transplant, using a donor's cells, either a relative or a match from the register. Sometimes, they can use the cells from a son/daughter's umbilical cord!
It is theoretically the only treatment which offers a cure to those with MCL - although obviously many people live long lives in remission. It is fast becoming a last resort, simply because it has a higher possibility of mortality (20%) than any other therapy. I know two people who had one, both of whom are way past ten years since the transplant. Most are very successful, but they can fail. In that case, you can try again.
I realise this is a lot to take in, so if you want to ask any questions, fire away.
All the best,
Warrington here - so not too far from Partner's roots!
Steve
Hi Polly,I hope you already find a solution. For your information there are several clinical trials of MCL treatment (I know only opened in the USA) : combination of BTK with rituxamb + chemo - NIH/NCI lymthoma group Bethesda, Besides, there are two experimental CAR-T that works instead CD19 (standard CAR-T) to CD20 or/and CD 22 cells. This are in Stanford, UCSF. The best site for MCL is likely MDAnderson in Texas, Dr. Michael Wang.
Very best,
Mike
Hello Mik, Unfortunately My husband lost his long fought battle with the Cancer and passed away in February 2021. The doctors said there was nothing else they could do for him.
Dear Polly, I am so sorry for your loss. Please accept my deep sympathy to you and your family. The mantel cell lymph is absolutely unpredictable and there is not any biomarker to predict the treatment outcome. Frankly, so far there is not any treatment. The best treatment is watch up if MCL is not aggressive. Your courage helped your husband fighting.
So sorry for your loss!
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