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?

I posted earlier asking for patient experiences with ceasing Revlimid and the length of time before noticeable relief from side effects. I received many helpful replies. Thank you. However, I believe that post was mistakenly deleted. After consulting with my doctors at Moffitt, Sylvester (University of Miami), my local oncologist, as well as an Email with Dr. Derman in Chicago (he has some very recently published research on length of maintenance). I have decided to take a break. Though all of these doctors seemed to think most side effects from Revlimid would resolve within 4 weeks (though acknowledging the effects on blood count would take longer to resolve). I feel based on anecdotal responses it could take 4 to 6 months or longer. I have a clear PET scan from October and I plan on having MRD testing as well in the next month or so. Based on those reports I will make a decision on how to proceed. Here are a couple of links related.... https://ashpublications.org/blood/article/142/18/1518/497188/Lenalidomide-and-dexamethasone-maintenance-with-or https://ashpublications.org/blood/article/132/23/2456/40023/Minimal-residual-disease-negativity-using-deep

My father was diagnosed with Multiple Myeloma (MM) in 2003 and was in remission until 2019. Since his relapse, he has been undergoing continuous treatment. Initially, in 2019, he was administered Velcade (2mg) and Dexamethasone (20mg) every fortnight. He then transitioned to Darzalex (1200mg) alongside Dexamethasone (16mg) for 25 cycles from February 2021 to May 2022. Since May 2022, his treatment plan includes Velcade (2mg) every two weeks along with weekly Dexamethasone (12mg). Despite these treatments, I am becoming increasingly worried about the progression of his disease. His Serum Free Kappa/Lambda ratio has been on a steady rise, currently at 2.65. This indicates a probable increase in monoclonal protein, further evidenced by a persistent faint M band in the gamma region. Additionally, his S. Free Kappa Light chains are at 28.43 mg/l, while his S. Free Lambda Light chains are at 10.7 mg/l. While I understand that treatment decisions are personalized and can be complicated, I can't help but feel that his current treatment may not be adequately managing his progressing disease. My primary focus is to ensure that he receives the most effective and optimal treatment possible. Considering the increasing Kappa/Lambda ratio, rising light chain levels, and the continuous presence of the M band, I would highly value your input on his current treatment plan's appropriateness. Are there other treatment options or modifications that we should consider? I am reaching out to you for your expert advice to ensure I am advocating for the best possible care for my father.

Kyprolis (Carfilzomib) Pom Dex - with Reduced Ejection Fraction Hi everyone, Is anyone on Kyprolis (Carfilzomib) with reduced ejection fraction (LVEF <50%) at baseline? Are you >70 yrs? What Kyprolis dose were you given/able to tolerate? Did you experience Cardiac side effects or toxicity? If so what? Were you able to continue with Kyprolis if you did? Did you need a dose reduction or did you have to stop therapy? Did the cardiac effects reverse or did you experience more long lasting impacts on your cardiac health? Were there other side effects of concern that you experienced? We're in a slow biochemical relapse and this is looking potentially like our next line of treatment and although our Myeloma Specialists do not think and LVEF or 45% is contraindicative for Kyprolis and this is looking like a possibility for our next line of treatment. I am concerned and would love to hear from other patients HAPPY NEW YEAR EVERYONE!

Hello. My husband is newly diagnosed (June 2023.) He is now on Revlimid with an insanely high co-pay! We have been able to get the co-pay assist card for the last two months that he’s been on it. But now starting in January, he has to reapply. They only give 15,000 for the year which will cover about two months. We applied again, waiting on insurance approval, but running into a lot loopholes again. I guess things are more complicated with that assistant program if you are in California. After the two months we will have to look into other options. Does anyone else have suggestions on where to get help if you live in California? He has private insurance. We are new to all of this and a bit overwhelmed trying to keep up with it all!

We are in the second week of the New Year! What has kept you motivated through your myeloma journey, and more? For me, it is the little things like snuggly hugs from my grandson.

Hello! I am wondering if anyone might have insight on this. My mom was diagnosed with non-secretory myeloma in June. At that time, I joined a clinical study for immediate family members. I received my results back, and my Kappa Light Chain was elevated at 22.36. All other results were normal (no m spike and normal immunoglobulins - which was the same for my mom, though she had significant disease by that time as shown on a PET scan). I am therefore not eligible to be referred for follow up as the those items were normal. Does anyone know if Kappa Light Chain can be elevated for a benign reason? Thank you so much!