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Has Anyone Taken Pomalyst 2 Mg And Had To Go Up To 3 Mg? Was It A Big Adjustment?
A MyMyelomaTeam Member asked a question 💭
A MyMyelomaTeam Member

Hi Donna, I do get Darzalex faspro every month. I’m waiting for my Dr to call with what he wants to do! 🙏🏻🙏🏻🙏🏻

Discontinuing Revlimid And Starting POMALYST While On Maintenance Therapy
A MyMyelomaTeam Member asked a question 💭

Due to a recurring itchy body rash developing when using Revlimid, I’ll be switching over pomalidomide with velcade and dex. POMALYST is 10 times more potent than that of lenalidomide. But what I’m reading, people seem to have less side effects although it’s in the same drug class. For those who are on POMALYST, what has been your experience?

Thanks !

A MyMyelomaTeam Member

Well I’m still taking revlamide 10 mg for maintenance at night but noticing back pain has doubled Shoulder pain too. Plus leg and feet cramps running to pee every hour or two all night long
Guess… read more

Daratumumab+Dexamethasone For Smoldering Myloma And Al Amyloidosis
A MyMyelomaTeam Member asked a question 💭

I am taking Daratumumab+Dexamethasone for SMM and AL Amyloidosis. Has anyone else taken Daratumumab+ Dexamethasone alone for SMM or AL Amyloidosis or both? Or does anyone take Daratumumab + another single drug for them? If so what? If you take a triplet also let me know what please.

A MyMyelomaTeam Member

I take Dara, revlimed, and dexamethasone for smm

Has Anyone Been Switched From Revlimid To Pomalyst? I Believe Pomalyst Is Newer.
A MyMyelomaTeam Member asked a question 💭
A MyMyelomaTeam Member

I am taking Daratumab, Dexamethasone and just added Pomalyst this week.Hoping and praying for improvement of myeloma.

Carfilzomib
A MyMyelomaTeam Member asked a question 💭

Hello out there!!
I just had to switch off Revlimid because I broke out with terrible hives, and now my oncologist wants me to try Carfilzomib. Has anyone out there been on or is being treated with this drug. If so then I would love your feedback!!
Pros and Cons.

A MyMyelomaTeam Member

I was on the (VRD) Velcade, Revlimid, Dexamethasone regimen, The Revlimid was stopped after I had the allergic reaction (yes - stopped for 10 days tried it again - much worse). The Velcade was… read more

What Treatment Options Have You Used For Relapsing MM?
A MyMyelomaTeam Member asked a question 💭

Unfortunately, after my SCT in Dec 2022, the MM has relapsed. It only took 10 months before it started to show up in blood tests. I had a bone marrow biopsy and the plasma cell percentage has now doubled from the value when I was initially diagnosed. So I'm curious to know if others have relapsed after a SCT and what was the next method of treatment used
We are looking to get me on Car-T cell therapy, but I do not yet qualify based on the number of refractory treatments (drugs that did not… read more

A MyMyelomaTeam Member

Thanks Larry. This us something I need to research before I decide to get tested
I'm starting to think that cancer/myeloma are mutations that just like every living being do everything they can to… read more

“Kyprolis (carfizomib), Proteasome Inhibitor. Symptoms, Side Effects, Did You Improve? How Long? How Are You Feeling? (before, During After?
A MyMyelomaTeam Member asked a question 💭

I would like to learn: who are or were treated with “Kyprolis (carfizomib), Proteasome inhibitor. Symptoms, side effects, did you improve? How long? How are you now? (before, during after?

A MyMyelomaTeam Member

I took 2 treatments of kyprolis and My heart went into afib. So now I have blood Thinner xralto
That made me have a blood bleed in my knee
And now I can't walk. Probably will have to get a new… read more

Has Anyone Been On Maintenance For A Long Time
A MyMyelomaTeam Member asked a question 💭
A MyMyelomaTeam Member

It's just something you have to decide and take whatever comes. If my numbers go up consistently, then I will re-think. 🤫. I'm not saying this outloud.....

About To Start On Pomalyst After 8 Months On Valcade And Darelex. Any Suggestions?
A MyMyelomaTeam Member asked a question 💭

Kappa light chain MM

A MyMyelomaTeam Member

I too have Kappa Light Chain MM; after 6 months on Revlimid and Velcade , plus Dexamethasone I am now one year in remission. Velcade gave me a rash at injection site. Dexamethasone gave me a terrible… read more

Has Anyone Been On Double Maintenance For A While
A MyMyelomaTeam Member asked a question 💭
A MyMyelomaTeam Member

One fellow in our support group has been on Revlimid for 6 years without serious side effects. One lady had issues and dosage was cut back.