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Myeloma

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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Looking For Feedback From Anyone That Has Done CarT Therapy?

Looking For Feedback From Anyone That Has Done CarT Therapy?

There is a new study that I am potentially eligible for involving cart T cells. I am newly diagnosed have not started treatment, at a high risk for leukemia so need to delay any stem cell transfusions for as long as possible. The study is looking for people in my category to see if doing the standard 4 rounds of rvd, stem cell harvesting then cat T cell therapy will give results similar or better then the current car T cell therapy after 4 relapses
Does anyone have any experience with cat T… read more

posted 1 day ago

Does Anyone Use Or Know Anything About Creatine Monohydrate?

Does Anyone Use Or Know Anything About Creatine Monohydrate?

I know It's to help build lean muscle when working out. I also know it should be avoided if there's kidney issues.

My kidneys are fine and my serum creatine levels are normal. One concern is that it won't add to my creatine serum levels and ever cause kidney issues. Reading online, everything indicates its safe to use. I'm adding 5g of it to my protein drink that I have after my morning gym workout.

I've simplified my gym time to two hydro-massages (one at the beginning and one at the end - 10… read more

posted 2 days ago
A MyMyelomaTeam Member said:

I wear socks around the house and I have minimal numbness around my toes. I hope I'm feeling everything....🤔

posted about 23 hours ago

This Question Turned Into A Discussion About MRD-SURE And Curcumin - Will Repost The Original

This Question Turned Into A Discussion About MRD-SURE And Curcumin - Will Repost The Original

edited, originally posted 2 days ago
A MyMyelomaTeam Member said:

Just heard back from my AON Nurse. She's fine with the Creatine supplement. I'll check in with my GP and the gym trainer as well but everything I could find indicated it was okay and helpful.

It… read more

posted 1 day ago

When Your Bloodwork Numbers Were Elevated, Did Anyone Notice Symptoms Prior To Having The Bloodwork?

When Your Bloodwork Numbers Were Elevated, Did Anyone Notice Symptoms Prior To Having The Bloodwork?

Examples:

Headaches, numbing, swelling, pains . . .

In other words, did you feel or notice anything in your body that made you think that your M spike and/or other numbers may have increased and the results of your bloodwork showed that your numbers had elevated.

Also,

Has anyone experienced elevated numbers after changing a medication?

posted 3 days ago
A MyMyelomaTeam Member said:

In my case I had symptoms of complete body muscle soarness. It was after my second Covid shot. That’s why they checked me and found I had MM. then all the fun started

posted 2 days ago

Hi

Hi

did any of u friends had reaction from darzalex faspro, or from platelet transfusion? if yess ,
whats the reactions? thanks

posted 3 days ago
A MyMyelomaTeam Member said:

Samar the first time you platelets went down it was 50 But it has went as high as 89 but it never stays there it mostly is in the 70s I get fatigue sometimes and when I do I no something is low in my… read more

posted about 1 hour ago

Swollen Face And Eyes From Daratumbin (spelling)

Swollen Face And Eyes From Daratumbin (spelling)

Has anyone ever had severe eye or face swelling from daratumbin or dexacon and velcade.
Th dr just added daratumin and his eyes have swollen bags which look like they are filled up n can burst if u stick a pin I. Each and his face n lips are swollen. He had the treatment Tuesday and it happened on Friday. Thx in advance. 🙏

posted 9 days ago
A MyMyelomaTeam Member said:

He is today swollen went down. Lots of ice. Thx for checking in 😀

posted 8 days ago

Back Pain Treatment

Back Pain Treatment

Doc wants to burn nerve endings in my lower back.
Anyone have this done, if so could you share your experience?
TIA

posted 9 days ago
A MyMyelomaTeam Member said:

I have had ablation done in my back and it didn’t really help me. Others have a good experience with it. Nerves do grow back

posted 7 days ago

Feeling Unmotivated

Feeling Unmotivated

I was diagnosed in May and on revlimed and 2 shots. I’ve hit remission but and continuing treatment until I decide if I want to try a bmt. The longer I’m on the meds I seems to feel physically worse. I’m to the point where I feel space and would rather stay in my Jammie’s and do nothing. Do others experience this. It’s very annoying. I have things to be done but I don’t want to. I’m on revlimed bel case and darxalex

edited, originally posted 9 days ago
A MyMyelomaTeam Member said:

I'll see if I can get MRD tested....thank you
When I was put on maintenance, I was warned that the Rev. could cause a second cancer, so I was aware. Because of my test results, it was not difficult… read more

edited, originally posted 8 days ago

How Much Dexamethasone And What Kind Of Side Effects Are Being Experienced

How Much Dexamethasone And What Kind Of Side Effects Are Being Experienced

My husband started at 40 mg weekly on the day of treatment. Doc reduced it to 20. It is difficult to tell which drug is causing side effects. He is having trouble with anxiety, back pain, fatique. He is also on Revlamid, Zometa, Darsalex fast pro.

posted 10 days ago

Stopping Treatment

Stopping Treatment

⁰I went on an emergency trip for two months to see my father and My mother,my father has Alzheimer's in an advanced stage, and my mother had a heart attack, so I had to stay two months to take care of them, of course I stopped the treatment, and they refused to give me Revlimed for more than 21 days, before I went all the tests were Good, M Spike 0.2, now all test come back like first diagnosed very bad, Protein 6 was normal now11,8, free light chain lambda 84,5 ratio<0,1, ,hemoglobin 8

posted 13 days ago
A MyMyelomaTeam Member said:

thanks for ur reply , I wish that.

posted 13 days ago
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