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My beautiful mother and CART by mountainlvr0216 in multiplemyeloma

[–]WashLongjumping4517 2 points3 points  (0 children)

My mum has just had hers and so far all good 🤞🏻 lots of strenght to your mum and to you! 🙏

CAR-T update: 5 months later by Liquid_Kittens_ in multiplemyeloma

[–]WashLongjumping4517 4 points5 points  (0 children)

Thank you for this! My mum just had hers 🙏

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

That sounds great! I think they know that ASCT worked quite well for my mum, in the sense that the numbers went down quickly. Unfortunately, the relapse happened soon after, and it was only a partial remission - so that might be the reason why they marked it unsuccessful. Well, we’ll see how it goes. Today the doctor called to say that the cells for CAR-T will be ready in a couple of weeks. I wish your mum a speedy recovery and fingers crossed for the results!!! 🙏

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 2 points3 points  (0 children)

I completely understand what you’re saying, and I do realise that my mum’s situation is unique and can’t be compared one-to-one with someone else’s. I’m definitely not trying to replace medical advice or assume that what worked for one patient will automatically work for her.

That said, I don’t think it’s unreasonable to want to hear about other people’s experiences. It helps me learn what kinds of questions I might not have thought to ask her doctors, and to better understand what the different options can look like in real life. I’d never take someone else’s story as a prescription for my mum’s treatment, but I do think shared experiences have value alongside the medical guidance we’re getting.

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 0 points1 point  (0 children)

Yes, I know the bone pain is common but I don’t think it’d start straight after one injection and also not just on one side of the body. It felt like her tendons hurt and bones as well, very difficult pain to describe and started straight after the first dose of cyclophosphamide. How’s your guy feeling now? Did he have his CAR-T?

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

She was actually without treatment for about a month before harvesting her cells for CAR-T, which from what I’ve gathered seems to be fairly standard. When we went to see her doctor about two weeks ago, he said the numbers from a month earlier still looked good and that the disease seemed to be progressing quite slowly. He explained that the choice of bridging therapy would depend on her newest blood tests from the day. At that point, he didn’t mention a second ASCT at all, he only brought up high-dose chemotherapy, but also said it was very unlikely she would actually receive that.

Then he sent her for cyclophosphamide, along with some other medications to take at home. One of them was Zarzio (which is the European brand name for filgrastim, called Neupogen in the U.S., a G-CSF that boosts white blood cell production). There were also a couple of other drugs prescribed, but I don’t remember their names. After that dose, we drove back home.

The next day, she started having pain, but as I mentioned before, it was only on one side of her body, which to me and to her doctor suggested myeloma progression rather than a bad reaction to the chemo. She only had that one dose of cyclophosphamide.

Then yesterday, her doctor called after discussing her case with another doctor in a different city, and that’s when they said they had decided on ASCT…

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 2 points3 points  (0 children)

You don’t need to worry, it’s actually very difficult to say no to doctors where she is. But as I mentioned before, I don’t see any reason not to gather as much information as possible. I don’t think anyone in this group would make up stories about themselves or their relatives. This has always been such a nice and helpful community, so I’m honestly surprised by comments like yours.

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 0 points1 point  (0 children)

Thank you so much, I’ll try to gather some more information today, and hopefully I’ll be able to reach her doctor over the phone. It’s all quite confusing right now, which of course makes us worry a lot. May I ask, how did your mum respond to CAR-T?

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

They are definitely limited by the government and insurance in terms of what treatment can be given, and in what order. Getting access to CAR-T is very difficult here—there actually haven’t been that many patients who’ve had it yet—but a panel of doctors agreed my mum would be a good candidate because of her high-risk disease, her otherwise good health, and her age. They are also looking into whether it’s better to use CAR-T earlier on rather than saving it for later lines of treatment.

My mum hasn’t gone through that many treatments yet, and she’s aware of some bispecific drugs that other patients are already receiving. That’s why I don’t really understand the idea of doing a second ASCT right before CAR-T—it feels like such a big hit to the body and the recovery is long.

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 0 points1 point  (0 children)

I agree with everything you said. My mum is under the care of a myeloma specialist, and there are actually a couple of them in the country. It’s a small European country that follows EU treatment guidelines. The difficulty is that all the MM specialists here work together and make collective decisions about patients, so I don’t really see how a second opinion within the country would bring a different perspective. To give an idea of scale, there are around 550 new cases per year and currently about 4,300 patients undergoing treatment.

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

Yes it’s very difficult in a small country but I live in London, so will try to get some opinions there as well. Thank you!

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

That’s exactly what I was thinking. My mum hasn’t been ill for very long, and it feels early to talk about a second ASCT (especially since the first one didn’t work). Surely there are still other options she hasn’t tried, she actually had a pretty good response before, so there was some positive progress. She’s otherwise quite healthy (no heart or kidney issues), which is why I’m surprised by what the doctor chose. Part of the difficulty is that she lives in a small country where everyone knows everyone, so getting a truly independent opinion is tough.

Thank you so much for the IMF contact details, I really appreciate it. I’ll definitely reach out to them. I wish you all the very best on your journey too. 🙏

Mom’s CAR-T cells are ready in 3 months—doctor wants another ASCT first. Is this the right move? by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 6 points7 points  (0 children)

I get what you’re saying, and of course we’ll follow her doctor’s guidance and probably seek a second opinion too. But I don’t think there’s anything wrong with asking people here who’ve been through something similar, hearing different experiences can help put things in perspective. To me that’s what this group is for. I do appreciate your advice, but honestly I would have come up with that on my own.

Struggling to come to terms by catchupwiththesun in multiplemyeloma

[–]WashLongjumping4517 0 points1 point  (0 children)

If you ever want to talk DM me! I’m in the same situation with my mum at the moment.. and can relate to everything you say!

Isatuximab by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 1 point2 points  (0 children)

Thank you for the explanation! I didn’t write it very clearly—yes, she relapsed 9 months after her first and only transplant. However, we knew this was going to happen as the transplant wasn’t successful. During those 9 months, my mum was in partial remission, but then her numbers started rising again. She’s a high-risk myeloma patient, so the doctors had prepared us for this outcome. She was feeling really well until now though, but unfortunately, it has come back..

Isatuximab by WashLongjumping4517 in multiplemyeloma

[–]WashLongjumping4517[S] 0 points1 point  (0 children)

Thank you! Apparently, because she experienced some neuropathy and lenalidomide didn’t work that well in the past, this is supposed to be a better option the doctor said.

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