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Does Anyone Go To The City Of Hope In Goodyear AZ? Can Anyone Offer Their Experiences With Revlimid Or Dexamethasone?

A MyMyelomaTeam Member asked a question 💭
Goodyear, AZ

I’m being treated for high-risk Smoldering Myeloma at City of Hope in Goodyear AZ. I’m in a Research Clinic Trial on the effects of Daratumumab to enhance the effectiveness of Revlimid in Smoldering Myeloma. Is anyone familiar with or in this Trial?

August 16
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A MyMyelomaTeam Member

Thanks for all the info you have sent. Much appreciated!

August 17
A MyMyelomaTeam Member

He took his Dexamethasone for a longer time the first time Around back in 2010 and he was real sick back then he had a fractured back so lost 30 pounds in 2 weeks oh boy were they worried and upset. This time around in 2023 September he started the regimen and was finished with the dexamethasone the end of May and on 10 mg of Revlimid and then every 3 months the bone strengthing iv. Anyway yes he gained weight ate a lot this time stayed awake and busy on weekend then slept during the week quite a bit dizzy which he still is dizzy. He gets so dizzy that he'll stand to try to stop it and his legs wobble... He has had vertigo so yeah all the things you are mentioning are the side effects it's a steroid with doe strong side effects however when you tell your doctors they do have the means to help you to counteract them. John was always to stubborn to ask 😂 no he sometimes asked for the nausea pill. He also takes Gabapentin for neuropathy. That is Fantastic About your Church!!!! I love Church I need to get back to mine. I like my Christian music And am proud to say that we went to a Concert in my hometown He is a distant relative of mine Matthew West he is so good. Anyway God Bless You #Don't Stop Praying 🙏 Love your Stories too and you ❣️

August 17
A MyMyelomaTeam Member

. I’ve been told the Dexamethasone causes lots of weight gain. How long did he take the ten 10 tablets every Friday?
. What kind of mental deficits are you speaking of.. memory loss.. loss of finding words to say ..or mental accuracy?
. Did he have any dizziness? Any swelling? Any neuropathy? Fatigue or sleepiness?
*I take Gabapentin for neuropathy right now before taking meds. I also have dizziness and vertigo and feel very sleepy. I’m wearing a heart monitor right now because my blood pressure is dangerously low. I also have stage 3 Kidney disease. I am 85 and have a cochlear implant due loss of hearing caused by 4 craniotomies. So I have a lot to deal with before going into the Trial clinic research program. But I have Gods blessings and his continual presence. I’m up between 4:30 and 5am daily for quite time with God and my Bible, watch a morning devotional with Pastor Ryan from Palm Valley Church, my dear church, and finish the morning with prayer journaling. I’m at peace and know God is with me.
May God bless you and your husband on your challenging journey. You and your positive attitude and determination along with perseverance is truly an inspiration to all of us who read your posts. Love you both.💕

August 16
A MyMyelomaTeam Member

My husband had this therapy twice in Iowa the dexamethasone is or rather was hard on him mentally. But it's very effective in making the Revlimid work. His chief complaint was he couldn't sleep. Ebry Friday he would Take 10 10mg Dexamethasone tablets and then be up and full of energy for the weekend. I hope you are doing okay. If I can help with anything more specific let me know. I'll try. He is off that know and doing good.

August 16
A MyMyelomaTeam Member

Experiences with Revlimid and Dexamethasone for Myeloma

Revlimid (Lenalidomide)
- Usage: Approved by the FDA to treat multiple myeloma, often combined with a corticosteroid like dexamethasone.
- Mechanism: An immunomodulator that modulates the immune system, potentially preventing the growth of new blood vessels that Show Full Answer

Experiences with Revlimid and Dexamethasone for Myeloma

Revlimid (Lenalidomide):
- Usage: Approved by the FDA to treat multiple myeloma, often combined with a corticosteroid like dexamethasone.
- Mechanism: An immunomodulator that modulates the immune system, potentially preventing the growth of new blood vessels that supply tumors.
- Administration: Taken orally on specific days in a 28-day cycle.
- Common Side Effects: Low blood cell counts, insomnia, dizziness, fever, fatigue, cough, rash, weakness, cold or flu symptoms, bronchitis, trouble breathing, back pain, muscle cramps, tremors, nausea, diarrhea, constipation, abdominal pain, and swelling in the extremities.
- Serious Side Effects: Fetal harm in pregnant women, low blood count, liver failure, allergic reactions, tumor lysis syndrome, severe skin reactions, heart attack, stroke, dangerous blood clots, and other types of cancer.

Dexamethasone:
- Usage: Often used in combination with other drugs like Revlimid to treat multiple myeloma.
- Risks: Can increase the likelihood of developing diabetes and high blood pressure, which are risk factors for heart disease.

Combination Treatments:
- Common Regimens:
- RD (Revlimid and Dexamethasone)
- VRD (Velcade, Revlimid, and Dexamethasone)
- VTD (Velcade, Thalomid, and Dexamethasone)
- Goals: To kill off as many myeloma cells as possible, with over 90 percent of people responding well to their first round of treatment.

For more detailed personal experiences, you might want to connect with others on platforms like MyMyelomaTeam.

August 16

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