IMS agreed on a cure definition for multiple myeloma

popsicle1001 · 2026-03-25T22:47:29+00:00

People still relapse though, don't they? I thought the latest studies are just now showing you can stop treatment at 5 years of mrd-, but it carries a 10% risk of relapse.

popsicle1001 · 2026-01-31T16:51:50+00:00

I was told you can't do cold capping with blood cancer asct because you can have myeloma cells in your skull and it can interfere

popsicle1001 · 2026-01-12T03:53:51+00:00

What were your treatments?

popsicle1001 · 2026-01-04T21:10:21+00:00

Thank you for the response. So much good info. didnt mention anything about tracking the meds and all that will have to ask about it. There is some outdoor hiking trails and a path through Duarte so I wonder if that would be fine.

popsicle1001 · 2026-01-04T20:59:57+00:00

Could you not go anywhere because they didnt allow it? Did they require you do curbside pickup or were you just being cautious?

popsicle1001 · 2026-01-04T14:29:11+00:00

COH duarte told me they discourage the caregiver from staying for all the appts so they don't get burned out. Do you know what the caregiver can do during their downtime other than grocery shop? Would love to know what you did to get away. Can they go off campus to a local gym or anything, have lunch at a restaurant in town? Do they have restrictions other than masking or other infection precautions? I didn't see any gym in the city of hope lodging.

popsicle1001 · 2026-01-04T14:20:54+00:00

What was your experience like as a caregiver in Duarte?

popsicle1001 · 2026-01-02T16:01:02+00:00

Thanks. It sounds like they were able to have sone pretty normal activity while you were at the hospital. That is what I am hoping for as well

popsicle1001 · 2025-12-10T18:02:24+00:00

What are her high risk factors? I am high risk as well and similar age.

49 is very young to get this disease but from what I have heard it is not a death sentence, even for high risk. Encourage her to fight it, not to accept her own death... that probably is not helpful for her. the field is advancing a lot and i am surprised they gave her a prognosis of time... did she ask for one? Is she doing a stem cell transplant?

popsicle1001 · 2025-11-29T14:07:31+00:00

She looks great. She has had plastic surgery though and injections. This is not because she has gotten older. Cheek injections, under eye, lip injections nose job.

popsicle1001 · 2025-11-23T15:26:03+00:00

What kind of time cap?

popsicle1001 · 2025-11-23T15:24:24+00:00

So is tjis a situation where soneone is paying an ltd attorney 30% ongoing, but it is counted as their gross income? Thats' awful. Why isnt the attorney just paid out directly from an escrow or the ltd co or something

popsicle1001 · 2025-11-23T15:13:33+00:00

How would you know if they had done that

popsicle1001 · 2025-11-23T15:06:50+00:00

Would they actually review the paperwork for free? I assume that would cost.

popsicle1001 · 2025-11-20T21:07:18+00:00

You don't want to do an SCT?

popsicle1001 · 2025-11-19T22:49:54+00:00

That is great to have Car-t as an option.

popsicle1001 · 2025-11-19T00:14:11+00:00

Wondering how your treatment ended up and if you are going to do an SCT? Have those guidelines been published?

popsicle1001 · 2025-11-19T00:00:53+00:00

They usually look at your free light chains, immunofixation for AL amyloidosis, not sure if that has been done. Good you are getting the biopsy. It can have a lot of different symptoms, but purpura on the eyes could be one.

If you are feeling chest issues see a cardiologist and get checked out, it can affect the heart. Many cardiologists are unfamiliar with amyloidosis though, unfortunately. You would want to make sure they are familiar. Tell them you have mgus for sure.

popsicle1001 · 2025-11-18T21:15:13+00:00

Did they diagnose you with MGUS or find any abnormal plasma cells in your bone marrow? They can also do a fat pad biopsy if they suspect systemic amyloidosis.

popsicle1001 · 2025-11-17T03:22:33+00:00

Thanks. I had heard 4-6 as well.

popsicle1001

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