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CPR Funds Now Open: Metastatic Colorectal Cancer, Multiple Myeloma, Pancreatic Cancer The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies. PAF on Facebook CPR Website PAF YouTube Channel Copyright © 2025 Patient Advocate Foundation, All rights reserved. You signed up for this list in order to receive messages, newsletters, event announcements and other relevant information from Patient Advocate Foundation. Our mailing address is: Patient Advocate Foundation 421 Butler Farm Road Hampton, VA 23666 Add us to your address book Want to change how you receive these emails? You can update your preferences or unsubscribe from this list.

I was diagnosed with IgG lambda smoldering multiple myeloma a year ago, after being followed for seven years with MGUS. BMB report said standard risk of progression for SMM, but high risk MM. I've been seeing a general oncologist for the last year, and am going for a second opinion with a myeloma specialist at Roswell Park. I'm 58, very close to the age my grandmother was when diagnosed with MM, but I have no known genetic cancer markers. I'm looking for suggestions on questions I should ask during my visit.

Anyone else with MM + AL?

I just got my immunofixation report back and this is what it says. mmunofixation: There is a trace IgG kappa band in the gamma region with co-migrating lambda light chain Note: The trace IgG kappa's electrophoretic migration is similar to the therapeutic Daratumumab. Everything is the same except the co migrating lambda light chain. What does this mean.? I have IGG Kappa myeloma. And I am on darazalex.

Is there anyone here that has a dual diagnosis of MM and ALS? I think it is pretty rare, but I have a support group member that has been diagnosed with both. Thanks,

My younger sister has MM. My older sister just diagnosed with GMUS. My question is, should I get tested? If I should, what test would be best?

Hi my name is Gloria seen my specialist today,I stopped taking my Daratumab shots ounce a month I believe it was giving me a lot of toxins in my body I started to have black taray stool so I ask to be taken off it I've been in remission over 3years and on a mattiance revlimid 2.5mg I was told to stop the 2.5 and go back to 5mg as if the 2.5 is not going to keep me in remission are just the the revlimi,what's going here has anyone had this problem

Hello My 86 mother was diagnosed Dec 2024. We were never given a stage she was at but im assuming early in disease her only symptom was anemia, no lesions, etc. She was started on vrd lite, rev 15mg for 21 day, dex and velcade. Tracking her lab work everything is in tn the normal range except of course hgd, hct,rbc that are kept down by meds. We would like to get her on maintenance doses so her energy levels would improve. Is that a rare request? She is a otherwise active healthy 86 yo

Hi All. First time post and hoping for some insight. We really appreciate all the knowledge shared on this forum and the support and wisdom that you all provide is worth more than you know. Was wondering if anyone has had an SCT with underlying heart issues, such as HCM? Looking into options and possible alternative approaches, is there still a long remission without an SCT?

Hello, bone marrow biopsy is very painful and traumatizing. Has anyone tried an alternative to bone marrow biopsy? My oncologist maintains that bone marrow biopsy is the only way, however, I've heard that there's an alternative through regular blood draw? I would love to hear from anyone who has experimented with an alternative method. Thank you

Hello, I had stem cell transplant for my Myeloma in September 2024. After transplant, I was on dexamethasone and venetoclax (stopped the dexamethasone after about 5 months and just did venetoclax by itself), for maintenance therapy. One year after stem cell transplant, my M-spike just showed up again. My question is, has anyone relapsed on venetoclax, and if so, what treatment did you get on next and how did that work out for you? Thank you

Hi, I have 2 questions I am 65/female and 3 years post SCT, my current status is sCR (stringent Complete Response). I am on 2mg Pomalyst for maintenance (21/7 day cycle) and have been since Sept 2022. My last appointment the idea of going to an every other month for lab work was broached. The monthly reports do give me peace when I see everything is status quo. Is anyone else on this schedule? 2nd - my fingernails are so damaged from this whole journey. Intense vertical ridges. I keep them trimmed very, very short and they still split from the tips down the vertical ridges, snagging on everything. Anyone else have this issue and found anything that works to heal them?

My father has MM. He was diagnosed in December 2022 . He is 84 and is on monthly maintenance, which includes Revlimid for 21 days. He sometimes experiences shakiness in his legs and then sudden weakness where he can’t hold himself up, that he ends up falling. Luckily he doesn’t break any bones, but cuts and lots of bruising. We have brought this to the oncologist’s attention, but says she is not aware of this side effect . Has anyone else experienced this?

I was diagnosed one year ago with SMM. I’ve read a lot about the potential benefits of curcumin to reduce M protein (M spike). We are monitoring and given that my blood work is checked every three months, I figured I can perform my own experiment with curcumin. In June, after taking 2 grams per day of curcumin for three months, my M spike dropped from 2.3 to 2.0. Causation is so tricky to determine, this could be random. I recheck in September. Has anyone else experimented with Curcumin? I also noticed, as a side benefit, I have less normal aches and pains.