Good Morning everyone. I was recently diagnosed with MM in May 2024. I take several supplements including Vit D, B-12, calcium, and methyl folate. After reading on gut microbe does anyone have suggestions on Probiotics? It seems some strains are better than others, so I wanted to check here to see if anyone has better efficacy with one over another. Thank you!

Hello, everyone. I had the CARVYKTI Car T Cell procedure in March 2023 and am thankful it helped to put me in remission until now July 2024. No chemo for over a year has been wonderful. But it's back and treatment will soon resume. The problem is, I am concerned about receiving treatment INJECTIONS in my abdomen. I've endured four life-threatening procedures in my abdomen and do not wish to receive treatment that involves injections in my abdomen if the side effects will worsen the pain I already experience from past surgeries. Can someone please share their experience with the injections in the abdomen? Thank you for making the time to read my post and provide feedback.

Hi. I'm from the UK, I was diagnosed in covid 2020. And had VCD chemo then DT-Pace chemo's in 2021 and then a stem cell transplant in January 2022. And then currently in full response, I still have to have blood tests and results every three months and have to take lenalidomide once a night for 3 weeks on and 1 week off and of course aspirin to go alongside of it. Anyone else here for the UK? I know that there are quite a few people who suffer from it in the UK so asking :-) I forgot yesterday to put I was diagnosed at 39 years old. It's strange because Myeloma used to be an older persons illness (I hate the word disease) and it now seems to attack anyone 30+. I have 6 wedge type fractures in my vertabre. Ironically 2 at the top, 2 middle and 2 near the bottom. I have to walk most days with a walking stick. To go from walking 15 miles a day to barely a mile and even then needing a stick is stupid. Although I was in a wheelchair for 4 months at one point and my now retired haematologist consultant said I would never walk again because of the damage that the cancer did to me, I said well Dr with respect you don't know me so I will tell you give me a max of 6 months and I may struggle but I will walk into your office. And I did 4 months to the day nearly. He annoyed me so much that I wanted to prove he didn't know everything. And then he retired a few months after my stem cell transplant. Now my consultant is a lovely German lady called Sylvia. Granted she doesn't do humour but she knows her job and actually said that my old consultant had no right to say if I would end up in a wheelchair the rest of my life or not. It wasn't his place. Granted with the vertabre issues I have it may lead to it one day but it's highly unlikely if I'm careful. Anyway there is a little low down on me and my journey. If you want to ask me anything please do I'm quite open. Just in case. I don't do shying away from anything. :-) Also thanks for allowing me here :-)

thanks for having me here

Hello. I am newly diagnosed and started treatment with velcade, darzalex, dex, and revlimid in May. All my numbers seem to be going down. My protein band has gone down to 0.37 from 2.59 with my light chain ratio at normal now. I was diagnosed with IgG Kapaa. My blood was drawn last week but did not receive treatment due to double ear infection. Why would my lambda light chains rise from 80 to 170? This makes me nervous that my way of thinking about normal is incorrect.

I was diagnosed with MM in the beginning of 2020 (yup! right in the beginning of Covid pandemic!!) after months of pain in my bones...I quickly got connected to the MM service at Penn Medicine and started induction. I then moved to NYC and had my ASCT at Memorial Sloan Kettering...I stayed in remission for almost 2 years, had a slight rise in Kappas so was put on Daratumamab which quickly put me back in remission. I had to get off of Revlimid as it made my immunity so low I got pneumonia so my MM doc then put me on Velcade along with the Dara. I have been in a wonderful remission ever since and my PET showed all my lytic lesions were healed!! I am so blessed and my daughter is now pregnant and I am excited to become a strong and energetic Grandma!! I continue with my Qigong and yoga and long, long walks in the city!!! Blessings to everyone here!!

Hello Everyone, LLS grants are now open. Apply now as they may not be open long

Did you know insurance buys. Ceribal prothesys. Lol wig. Much better than wig store wigs. Get doc prescription.

Hope everyone is using curehub for webinars.

My doctor wants to start me on monthly IVIG infusions to boost my immune system. My IGG levels remain in the 200's range due to myeloma treatment. I have read the long list of possible side effects. If you receive IVIG infusions, can you share your experience. I know that pre-medication with Benadryl and Tylenol is standard. I cannot take Benadryl due to a paradoxical reaction, so my doctor is recommending Zyrtec. If you pre-medicate with Zyrtec, what is the dosage? z

Any other young multiple myeloma patients here? I'm 36, was diagnosed last year at 35. I've done 3 cycles of RvD for induction therapy and ASCT. BMB and blood tests showed no detectable levels of disease, VGPR (though they don't offer MRD testing in Eastern Canada). When I was diagnosed my hematologist told me on average patients my age treated in Canada with standard risk could expect about 15 years survival. Anyone care to share their experiences with a MM diagnosis at a (relatively) young age?

Hi all, My husband started Talquetamab + Dara in February. He was getting both, every two weeks. It has had so many awful side effects. He lost his taste in February. We were told once he went down to one a month with the Talquetamab, his taste would start to come back. He is into his second month getting the Talquetamab once a month and still has no taste. It’s also causing his hemoglobin to stay low and require shots of Procrit. Can anyone share experience of when their taste started to come back on Talquetamab and how long it took? Also, did you have any issues with low hemoglobin?