Is anyone with Kaiser and been successful in getting them to cover you to see an outside Multiple Myeloma Specialist? I am in Northern California and though they have malignant hematologists, there is no-one who specializes in just myeloma. The only way I might get it covered is to convince them that I need something they cannot offer. Does anyone know a source that says a doctor must see 50 or more MM patients a year to be considered a specialist? MM is such a complex disease - I feel strongly that a MM specialist is needed to help us with the best treatment and outcomes. Any other thoughts to help support my case are appreciated. Thanks.

has anyone taken magnesium glycerinate for nerve pain in back while on pomalyst,dex and dara?

Is there an Android app? Have it on my iPad but don’t see it in Playstore for my Samsung phone.

I am confused about the definition of "Newly Diagnosed Myeloma". Does this mean right after your diagnosis but no treatment yet? Or does it mean when you start your first line of treatment? (I am SMM since 10/2021, high risk 4:14, 2 docs say no treatment yet, which kinda worries me) Please explain definition of newly diagnosed myeloma.

My ABECMA cart T lasted eight months and then I relapsed. I started Teclistamab in August 2023. I have had a loss of taste and appetite , ever since starting treatment Now,I have GI issues. All testing from GI doctor are negative. This is week 6 no solid poop. Am I alone ?

Has anyone gotten their labs to show up in "cue hub"? My labs and health records are linked and downloaded. Still nothing shows

HI All! This is my first post In here because I really don't know what to write! When I was diagnosed in 2018 both of my parents had been deceased for years! What rest of the family one left on both SIDES are about 3-4 aunts an uncles! I have two adult children my daughter who lives with me who was still IN high school i a son who is married who I feel like doesn't support me! He has never been to A chemo appointment nor doc appt, with me!I have A best friend and A out of town Cousin who is also on list of my supporters! I just feel alone! When I reach out to support groups i haven't connected with anyone that I feel wants to keep IN touch, I don't know what's wrong with me that no one cares. I really feel alone! I used to literally my drive self to chemo 1 half hour each way to my Chemo, I Couldnt get a SCT because I did Not have soul who would stay with me for a month 24 hours A day which was Required! This was to me At The TIME life & Death! I think IM STILL harboring hurt, angry1 feelings to the few In my Life who I feel could have don't It mainly my kids....... I just can't get past this.. Why am I not loved enough? My parents never loved me so iguess In used to this.in there for every owe else emotionally & everyway! I down know. But what I do know is how much God loves me cause In I'm remission for five years on revlimin & dex! Thanks for listening!

I am a multiple myeloma patient already recvd 6 cycles of chemo and the lab results are ok. Is it necessary to go for bone marrow transplant by autologous.

I suppose this is more of a basic adulthood question, but I'm moving to a different state. Do I just call up the place I want to receive care at to establish a new doctor and they will get the electronic records transferred from my current myeloma doctor?

Dx with a plasmacytoma this year. Started with severe right hamstring pain. Plasmacytoma in right sacral area. Currently on Darzalex. Complete workup done in October; BMB, PetScan, and full body MRI. BMB pathological normal. FISH study normal. PetScan no activity or other tumors. MRI shiwed a small increase in size on plasmocytoma. Discussed the possibility of changing treatment which would be the biospecific's. Dr didn't want to radiate the pelvic region due to the area being a major source of blood cell production. I didn't want to utilize the Teclistamab yet since the Darzalex is keeping the myeloma numbers down but in not in shrinking the plasmacytoma. Discussed the possible of doing a radiogy-guided radiation to decrease the area of exposure. Has anyone else had the pelvic region radiated due to a plastic and what was the outcome?

Good Morning and Happy Thanksgiving to all. 83 years old, widowed. I was diagnosed with MM in late 2019. For 1 year, I was on VLD, then for two years on KLD and now on DPD, Dexamethasone ( 20mg on day of injection) Pomalidomide, 2 MG and Darzalex Fast Pro. Can't believe how much better I feel with this treatment on the eve of injection and after a good night sleep. Labs are also trending in the right direction. If I can be of help to anyone please contact me.

Hi everyone my name is Amy salmon I’m 52 yrs old and I was diagnosed in in August of 2018! I was Mis-Diagnosed for two years….. I went to UPMC and kept there for almost a year and was finally diagnosed with MM! I say finally cause I finally had some relief! I was put on Revlimid, Dex, and aspirin. This has been my go to since I heard about this disease. It’s very hard at times dealing with my teeth falling out and other things that I can’t remember. So forgive me please!! I am in remission now for 5 years and I thank God for it and my doctors at UPMC! I really want to help advocate for MM in my community and city! (Pittsburgh pa) but don’t know where to even begin. I want to hook up with people from here As well! I don’t know what anything means on my lab work. Idk, it’s hard when you are black in a white community! No offense anyone. Didn’t mean that in a derogatory way honestly. I have no friends really but 2! It’s a lonely battle for me. I do have my baby girl she’s 24 by my side but I want her to live her life! We butt heads a lot. She is my caregiver! lol whew! IM-a-GINE-THAT! Hahaha love her to the MOON AND BACK THOUDH AND AM SO APPRECIATIVE OF ALL THAT SHE HAS DONE for ME! Well please if anyone wants to talk please reach out! Thank you!