Hi friends, I started taking Xgeva about a year ago each month (the previous year they gave me Xgeva every three months). Now I have ONJ. I have to get a tooth pulled because of this. I'm scared as from what I have read it is getting the tooth pulled that can exacerbate the ONJ. Can anyone who has ONJ please share their experience and advice? Anything to watch out for? Anything that can improve the situation? All advice accepted, other than advising me to consult my doctor. Thank you.

We all have someone who’s been by our side through it all. Share who your biggest supporter has been, and let’s celebrate them! #nationalcaregiversmonth #caregiver #caregiversupport #caregivermonth #bloodcancer #fightcancer #healthcare #cancercare #healthtree

Hello all: I'm new to this forum. my husband was diagnosed 12/22/2024 with CMML - has been on decitabine therapy since. recently had relapse and is not doing well - doc will take another bone marrow biopsy soon to determine whether chemo not working or disease progression or both and possible transformation to AML until relapse in September 2024, he had very few side effects and lived life fully. now he is extremely weak and tired, swollen feet/ankles, low labs, pallor interested to know if anyone has similar situation. thank you.

Hi everyone, The VA announced that they are starting the process to add MM to the list of presumptively eligible diagnoses for VA disability under the PACT act. If you served in the military take a look to see if you might qualify. I found another resource that MM is usually awarded a 100% rating, so this is a significant amount of potential funds and not to be overlooked. https://www.military.com/daily-news/2024/11/12/va-set-add-leukemia-multiple-myeloma-list-of-conditions-linked-burn-pits.html

Upon doing testing for an autologous stem cell transplant, my Echo heart test showed that the "left atrium is at the upper limits of normal in size" and there is a "mild regurgitation of the mitral valve." (EKG showed normal results.) Has anyone had this on a test result? I was shocked because I have never had any heart issues at all that I was aware of. I am wondering if this will disqualify me from a transplant. And if it does, I wondered if I could still do the harvest for later. I'm 55 YO female. Standard risk. IGG/ Lambda light chain. My M-spike is zero. My IGG and Light chains are on the low side. Just had BM biopsy this week with no results back yet. But after 4 rounds of quad therapy (Rvmd/Darzalex/Velcade/Dex) I have responded quickly and well. I never expected any issues with heart. Don't see dr until next week so I just wondered if anyone else had this issue. I only know about the test results because they were posted on an app where I can see test results. Thanks

After 28 months of remission, I'm now relapsing. Carvykti was a great thing for me, but as with most people who have this, relapse happens. I'm wondering if any of you have relapsed after BCMA CAR-T and what therapy you went on after that, and how well it worked for you. Thanks!

I have smoldering myeloma. My igG is below 400 currently but no infections and no other symptoms. I am considering a partial knee replacement but concerned about increased risks short and long term with my SMM and likely eventual need for myeloma treatment. I was thinking it’s now or never as I will never be younger or healthier than now but maybe it should be never??? The knee pain definitely limits me but it is manageable with limited activities. Any comments, thoughts or experiences on knee replacement? Thanks

Hello, I need some clarification on the role of ever use of tabs Erythromycin as a possible predisposing factor to the development of multiple myeloma as documented in a US based research. I am worried because I become symptomatic after a five day course of erythromycin in February 2024 for an upper respiratory tract infection URTI. The URTI treatment was followed by a localised area of skin depigmentation on the face and a bout of shingle infection and ever since then muscle soreness, bone pain and tiredness have persist. I was never symptomatic, blood test as of October 2024 still shows: M-spike of 8.7g/l (0.87g/dl) and kappa lamda ratio of 2.66. Pet-ct scan in August 2024 showed no active lytic bone lesion. Bone marrow biopsy on September 2nd 2024 showed 5% plasma cells, sample was not enough to carry out FISH analysis according to my consultant Has the link between ever use of erythromycin to cause multiple myeloma been proven. Has anyone else experienced similar issues. Thank you

Wondering if anyone else has any insight into having low lymphocyte counts following an autologous stem cell transplant? My counts have stayed around 0.75 x 10⁹/L (normal range for this lab is 1.5 c 10⁹/L) My hematologist/oncologist isn't concerned and told me it often takes a few years for these numbers to get back to normal (and that sometimes they stay low). My other numbers climbed back up to more or less normal soon after the transplant, though my hemoglobin is a little under normal range. I don't have any symptoms, and I haven't been prone to infection any more than prior to the ASCT. The only thing I can find in my research regarding lymphocyte counts post-transplant is that it's sometimes a prognostic indicator. Anyone else have more insight? I'm endlessly curious.

Hello all. I was wondering if anyone has been told by their oncologist to avoid eating deli meats since they are immunocompromised. Thank you.

Foods to help relieve constipation and diarrhea according to experts at LLS

November is National Caregivers Month! Let’s honor those who provide essential care and support to loved ones every day. Caregivers show compassion, resilience, and dedication every day. Thank you for everything you do! What other tips would you give a fellow caregiver? #nationalcaregiversmonth #caregiver #caregiversupport #caregivermonth #bloodcancer #fightcancer #healthcare #cancercare #healthtree

HealthTree is conducting a research study to learn more about your experiences with talquetamab. Eligible participants will complete a survey and two 90-minute interviews (with the option to split sessions if needed). For more information and to see if you qualify, visit: https://healthtree.org/myeloma/curehub/private/research/88Z6WM3woxawnezPqqet?utm_source=social+media&utm_medium=connect&utm_campaign=talquetamabinterview&utm_content=general If you have any questions feel free to email us at support@healthtree.org or call 800- 709-1113

My Immunoglobulin G has been below 400 for the 3 years I've been on treatment. I have not had many infections. I've read that some think that if the Immunoglobulin G is below 400 you should get an IVG infusion. My thoughts are if I'm not getting infections why would I submit to another level of treatment. Any thoughts?

REally consider getting long term care insurance. Wish we had as now up a creek. Didn't realize assisted living places require u to bring your own furniture. I've stopped treatment as got very sick after sarclisa/kyprolis 2 weeks ago. Was handling it ok till they gave both in same day. I've been fighting this disease for 10 yrs and am tired, cant' drive now, very weak. My beloved has also become ill due to all the stress, neither of us able to drive and no one to help. Bad situation...Some times this disease causes one to linger and that gets very expensive and stressful. We just keep trying our best. Caregiver agencies require 4 hour minumum to come to the home and who wants a stranger sitting in their home that long esp with risk of covid, etc. Atleast insurance covers inhome nursing but doesnt' reallly help with caregiving or food, etc.

I am in maintenance with KRD , my question is what is the benefits of the Dex , does it help with MM or just for pain ??? I take 10mg every other week ,

Sexual health has been a big issue for me after autologous stem cell transplant. I have weak erections and ejaculation doesn't feel as intense and exciting anymore. I'm now 60 days past transplant. Has anyone else experienced this issue, and did it improve with time...what did you do to help treat it? Thank you for your feedback 🙏