Hello, is anyone here taken , KPD& Dara infusion ( Kyprolis, Polmyst, Dex plus a Dara infusion? I am going into my 1st week. I have triple hit multiple myeloma as well as lambda light chain. I was on RVD Maintenance after my SCT in June2023. Oddly enough, I developed an allergic reaction to Revlimid and was not able to stand it. Please share experience, your thoughts and suggestions about this combined therapy program.

Hello, is anyone here taken , KPD& Dara infusion ( Kyprolis, Polmyst, Dex plus a Dara infusion? I am going into my 1st week. I have triple hit multiple myeloma as well as lambda light chain. I was on RVD Maintenance after my SCT in June2023. Oddly enough, I developed an allergic reaction to Revlimid and was not able to stand it. Please share experience, your thoughts and suggestions about this combined therapy program.

I did not have ASCT but have been on 10mg Rev maintenance since the end of my induction treatment 3.5 years ago. IGg Kappa, my M spike has stayed between .1 and .4. Wondering if anyone has stopped the maintenance Rev and what results you had.

A couple of healthcare professionals speak to me in a sing-song tone of voice that sounds condescending to me. They might use the words, “honey”, “sweetheart”, etc. It sounds like they are speaking to a young child. I have learned from online research that this is called “elderspeak”. Elderspeak is very annoying to me. I have found lots of articles online to educate nurses about elderspeak. Apparently, some are unaware of this behavior until they hear a recording of their voice. I have not found any articles online that give suggestions about how a patient might respond to elderspeak when annoyed or angered by it. Please let me know how to respond to elderspeak. To Healthtree University: Could you ask someone to write an article for your website about how patients might respond to elderspeak? Your article about “Assertive vs Aggressive Patients” was very helpful to me. We discussed that article in our myeloma group. And, your videos are fabulous! Thank you!

LLS has available the $100 Patient Aid Program. There are no income requirements and to be eligible: Reside in the U.S. or U.S. territories at the time of their application. Have a confirmed diagnosis of blood cancer, be in active treatment, scheduled to begin treatment or in follow up care. Have NOT received a Patient Aid Program award in the past. To apply see: https://lls.org/support-resources/financial-support/patient-aid-program

Hi everyone - I am a 62 year old South African diagnosed 10 years ago this month and I am still strong. I am on my third dose of Teclistamab. I had pretty severe Cytocline Release fevers on first dose but all good now. I have large skin rash/inflammation areas on my tummy from the sub-cut injections which seem to stay for around three weeks. I'm wondering how common this is and if there are any remedies to reduce the skin sensitivity. Thanks Stuart from Cape Town, SA

The Myeloma Co-Pay fund reopened today at 1pm ET. In addition to the follow funds still remaining open MDS- Myelodysplastic syndromes (MDS), Chronic myelomonocytic leukemia (CMML), Juvenile myelomonocytic leukemia (JMML) (diagnosis formerly known as chronic myelomonocytic leukemia of infancy [CMML]),MDS/MDP overlap syndrome AML - Acute myeloid leukemia (AML), Acute promyelocytic leukemia (APL), Erdheim Chester Disease, Mast cell leukemia, Mastocytosis CLL - Chronic lymphocytic leukemia (CLL/SLL), B-cell prolymphocytic leukemia (B-PLL), Hairy cell leukemia, Large granular lymphocytic leukemia Lymphoma - Hodgkin lymphoma (HL), Non-Hodgkin lymphoma (NHL), T-cell large granular lymphocytic leukemia (LGL), Lymphomatoid papulosis, Post-transplant lymphoproliferative disorder (PTLD) As always, the funds are highly applied to; so please share this notification among your colleagues. To learn more about these funds, visit www.LLS.org/financial-support.

LLS Co-Pay Assistance for Multiple Myeloma ($5000) Just opened up.

I am D. Jack MacConnell and live with wife and son in Catonsville, MD. I was diagnosed in late 2014 with IgA lambda MM at age 77 and was not a candidate for a SCT. I responded well to Revlimid and was on it except for 2020 when I was on Ninlaro but then back on Rev. for a clinical trial at Johns Hopkins Hosp. in 2021 and 2022. I am on Medicare and have a Medigap plan and had co-pay assistance from several organizations so never had out-of-pocket expenses. In late Sept. 2023 I was put on Pomalyst and Darzalex Fastpro and have had 11 Dara injections to date, 9 of them before my latest Healthwell Foundation grant started on Dec. 7. After Medicare and Medigap payments, I am seeing bills for about $1500 per injection; this times 9 is about $13,500 to date! (Assuming that the most-recent two are covered by my grant.) My question: Is there some way to cover this expense? Janssen (maker of Darzalex) has an assistnace program - is it worth applying for? Medicare has the Extra Help program - is that worth applying for? Any advice is appreciated - thanks.

Hello! I have MM stage 3. IgG Kappa. I’m MRD- and have complete stringent response. Since September my kappa light chains have been high and continuing to trend higher. 4 months now. My K/L ratio is still in normal range. I’ve heard a couple of physicians presenting with HealthTree over the past year state that they view an increase of kappa (even if ratio is normal) as important if not more important than the ratio - that perhaps something is going on. I understand you can’t look on one test in isolation but this is worrisome after hearing these opinions. I want to prepare for my physician visit next week. Does anyone have any insights on increasing kappa when ratio is normal?