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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.
July 28, 2024
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A MyMyelomaTeam Member

Hey DanaMarie, I have been on Kyprolis. I took it with Pomalyst and dex. It didn't work for me. I'm currently on Darzalex Faspro with Pomalyst 2 MG. I do get very tired. Making myself exercise really does help. Watching my carbohydrate intake helps as well. They let me drop the dexamethasone a few years ago. I get more sleep now. That helps more than anything. Darzalex eventually goes to monthly. That does help. I remember having to take naps during induction. I also remember Kyprolis made my blood pressure go up. So you might want to check you BP at home. Rest when you need to. The first year with thus disease can be rough. It does get better 🥰

July 28, 2024
A MyMyelomaTeam Member

I'm so sorry. I do Pomalyst, 3 mg and Darzalex. I've been on the regimen for 3 years, but now the Pomalyst is making it hard for me to keep up with daily life, so I'm going down to 2 mg next cycle. Hope it gets better for you soon. 🙏🏻

July 28, 2024
A MyMyelomaTeam Member

Hey Maryanne, I hope he doesn't have any more cardiac episodes. Is his blood pressure okay now?

July 30, 2024
A MyMyelomaTeam Member

My husband had done 6, 28 day cycles of Kyprolis and DarzalexFasPro for consolidation therapy to try to get a deep remission after ASCT. He had no problems at the first and second cycles. After that his heart rate increased once with the highest increase one time to 127. Yes, he did feel “weird” his word for it. He would be exhausted about 4 hours after the infusion but better the next morning. In his case, it was the Kyprolis that caused the problem. He went to the emergency room for the high heart rate and was admitted to the icu for 4 nights because of low blood pressure. He’s had only DarzalexFasPro without Kyprolis twice and had no reaction s o it definitely seems to be the Kyprolis. His last 2 Kyprolis infusions he had 10 mg of infused Dexamethasone and his heart rate still increased but did not have the low blood pressure and didn’t feel and “weird” by the time he went to bed about 11:30 PM that night. I’ve read some people don’t have side effects but some do. He had a bone marrow biopsy a week ago. Kappa light chains and ratio came back a look good as well as FISH study. We don’t have everything back yet, and hoping for the best.

July 30, 2024
A MyMyelomaTeam Member

So you think it is the pomalyst not the Darzalex that zaps your energy?

July 28, 2024

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