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HipsterGranny1960
Multiple Myeloma Discussion • January 22
Multiple Myeloma and Medicare advice
Hi. I just turned 65 and up until a few days ago, my husband had a great job and we had great insurance. Then he got laid off. I am scrambling to figure out my Medicare option before 2/1/26 as I have my infusions, etc next month. I spoke with Social Security and since my birthday was literally a month ago, I will face no penalties, but I don't know what plan to get. Someone said Plan G was the best, but with what company? And the Part D is totally crazy. Currently I'm on lenalidomide. Some plans have zero premium and seem to cover it and some have a huge premium and seem to cover the same. Help! Any insight anyone has regarding this would be so appreciated. I am hyperventilating with anxiety about this. Thank you!
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CarlWLarsenJr
Multiple Myeloma Discussion • January 21
MajesTEC 7 Clinical trial
Hi I am about start drug therapy under the MajesTEC 7 clinical trial . Anyone have experience with the financial responsibility under United Healthcare and Medicare Advantage.
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DIahanna • Admin
Acute Myeloid Leukemia Discussion • January 21
Financial Assistance grants
Please review grant opportunities to help you cover copays, deductibles coinsurance and out of pocket expenses. Go to the financial resource site. Check back often as they open and close often
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HDurf
Multiple Myeloma Discussion • January 21
CAR-T recovery
Anyone else having difficulty getting their CD4 T-cells above 200? It’s been 8 months and mine are still below 200. Also platelets, lymphocytes, neutrophils, are all low. Any tips to help these numbers rise?
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gknautz
Multiple Myeloma Discussion • January 20
Understanding Paraprotein Levels in SPE Results?
Hi All, this is a very good discussion board and thanks for everyone's insights: Question: I have been getting routine labs for over a year and within my SPE results there has been my paraprotein levels (0.1, 0,2 and once 0.4) my latest results did not report any paraprotein. Does this mean it wasn't ordered or there was no paraprotein in blood. I am hoping for the later.
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Isaac
Multiple Myeloma Discussion • January 18
Using AI to Interpret Lab Results
If you're like me, when I was diagnosed, I would get really anxious about my lab results. Often times my medical team wouldn't take the time to explain to me everything, or I would get the lab results late after I had already left their office and wouldn't know what they meant (e.g. why a certain number was low, high, or abnormal). This often resulted in me frantically googling things to try and make sense out of the copious amount of medical jargons. As a result, I would grow more anxious after reading all the negative possibilities about my lab results on Google. Enters AI/Chat GPT: I can honestly say AI, and Chat GPT in particular, has really been helpful in helping resolve this problem for me. I'm able to copy and paste my lab results (while omitting my personal information), into Chat GPT, and within seconds it spits out very detailed interpretation of my labs including suggestions and recommended questions for my medical team. It mains a history of my treatment records based on the data I've fed it thus far, and based on this, it is able to provide encouraging analysis such as whether my disease behavior is typical/expected at certain phases or due to certain treatments; recommended treatment options based on my disease traits, and possible outcomes; how soon I expect improvement of certain numbers, etc. The thing is phenomenal; it's like having my on little personal doctor at my fingertips. And what I love most about it is that it explains things using a very encouraging and empathetic tone; I no longer get the doom and gloom tone that I was getting when I would Google things before. This has significantly helped with my anxiety and has improved the the way I feel about my disease - I am more hopeful and I am able to confront my lab results with confidence and optimism. Granted, I'm aware of the fact that AI can be wrong at times, so I always make sure to cross reference it with my oncologist, and so far everything has been on point. For example, I was a bit skeptical when my oncologist was refusing to change my bridging therapy going into my Car-T given the fact that my M-spike and IGA were increasing rapidly with the bridging therapy I was on. I wasn't getting much explanation from my oncologist aside from him telling me to continue to take the same meds. But when I put my M-spike, IGA, and bridging medicine data into Chat GPT, it was able to explain to me in detail why my oncologist was insisting on keeping on the medication despite my numbers increasing; why this was a good call by my oncologist; and why I shouldn't be concerned because even though my numbers were rising, they were still considered within the normal and safe range for going into Car-T. As a result, I stopped sending frantic messages to my medical team, and sure enough, I underwent Carvykti Car-T on 5 January 2026, and everything has so far gone very smoothly (no CRS, just low grade fevers two times, and no neurotoxicity), and I'm scheduled to for discharge tomorrow. I apologize for the awfully long length of this message, but I just wanted to share my experiences with AI, and how it has significantly improved my ability to interpret my lab results on my own, as well as helped me look at my disease journey positively while reducing my anxiety. I hope this will encourage others to use AI/technology to better manage this difficult journey, if they already haven't done so. Thank for taking the time to read, and I would love it if you can also share your experiences with AI in managing your diseases.
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shaila02784@yahoo.com
Multiple Myeloma Discussion • January 18
HRT vs Herbal Supplements for Menopause
After my CAR T in Feb 2025, I went to menopause at the age of 41. My gynecologist is a bit hesitant to put me on HRT due to blood clot and gynecological cancer risks. My symptoms are primarily hot flashes, night sweats and low energy level. My gynecologists suggested few supplements to manage hot flashes and night sweats. Wondering if anyone tried any supplement or anything else and found relief from these symptoms? Thank you in advance.
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Sharon
Multiple Myeloma Discussion • January 17
Kidney failure because of multiple myeloma
Is there any research being done on kidney failure because of MM? Seem there must be some way to unclog the kidney filters 🙏 🙏 🙏. Very interested in any information you can provide.
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KIgKappa
Multiple Myeloma Discussion • January 16
Questioning if I have fibromyalgia or Darza related
Anyone develop, diagnosed or have fibromyalgia approx. symptoms, 4-9 months after ASCT? I am not implying ASCT caused this. Could very well be the darza Faspro too, but I "think" I recall complaining before I started any maintenance drugs. Thanks.
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NormaL1
Multiple Myeloma Discussion • January 15
Celiac disease
As if SMM and getting older isn’t enough, I was just diagnosed with celiac disease. Both diseases measure immunoglobulins so I am not sure what is what. Can anyone help me out? I won’t be seeing my oncologist until the summer to ask him.
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cncahoon • Admin
Multiple Myeloma Discussion • January 13
AML and CLL grants through the PAN foundation are open!
We talked about it in the financial webinar last week, but figured we should mention here as well, grants for AML and CLL are still open. If you have another cancer or health issue, there are other grants that are open as well. I will add the link to check what is open below. Here is a link to the webinar: https://healthtree.org/myeloma/community/events/jan26-financial-blood-cancer-assistance
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Banklady
Multiple Myeloma Discussion • January 13
NEED HELP WITH SLEEP - DEXAMETHOSONE
I had my first DVRD treatment of first cycle yesterday, 1/12. I did not sleep at all last night. Is it the DEX? I took 2 Tylenol PM which sometimes works for me (I have a history of insomnia) but that did nothing. I have a script for Zolpidem which I took on Sunday night because I was anxious about 1st treatment (which usually works for me). I do not want to keep taking Zolpidem regularly because it causes dependency for me. How long will this last? Any advice, experience with this would be greatly appreciated.
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DIahanna • Admin
Multiple Myeloma Discussion • January 12
CancerCares Co-pay Assistance Program
Cancer Care financial Assistance online application program is not available, effective Jan 9th, until after they have transitioned to a new system. TBA
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DIahanna • Admin
Multiple Myeloma Discussion • January 12
ACA Enrollment and issues
You have until January 15th to enroll in ACA or Obama Care. Although the subsidies have not been reenacted. The House has voted to expand the subsidies for 3 years but it has not yet come to the Senate for vote. President Trump has signaled he will Veto the bill if it comes to his desk.