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JazzyJoan
Multiple Myeloma Discussion • November 17, 2023
Experiencing GI Issues on Teclistamab?
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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 ?
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violetLion
Multiple Myeloma Discussion • November 17, 2023
Getting Labs to Show Up in Cue Hub?
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Has anyone gotten their labs to show up in "cue hub"? My labs and health records are linked and downloaded. Still nothing shows
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GraceandMercy52
Multiple Myeloma Discussion • November 16, 2023
Coping With Loneliness and Lack of Support
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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!
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Robsi1
Chronic Myelomonocytic Leukemia Discussion • November 16, 2023
Coping With the Anxiety of Watch and Wait?
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Vor 1 Monat Diagnose CMML1. Die Onkologin meinte, derzeit Watch and Wait und ich soll im Jänner nochmals vorstellig werden. Bin aufgrund des Wartens voll durch den Wind. Meine Frage - Watch and Wait - ok?
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BentonMcCune
Multiple Myeloma Discussion • November 15, 2023
Tips For Transferring Care To A New State?
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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?
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ArlMP
Multiple Myeloma Discussion • November 14, 2023
Pelvic Radiation for Plasmacytoma: Experiences?
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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?
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rudiflik
Multiple Myeloma Discussion • November 11, 2023
Sharing a Positive DPD Treatment Experience
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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.