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The Kitchen Table

LuckiIrish? A Little Help Please?

4 years ago

last modified: 4 years ago

Hello! Are you still reading the KT? You helped me so much after I was diagnosed with I Multiple Myeloma four years ago, sharing your late husband's experience with the disease. I thought you might have a comment about a recent development if your husband experienced this. I'll certainly understand if you don't want to revisit any of this!

My doctor wants me to add Revlimid to the Darzalex I've been on for two years. It's starting to fail, the same as my first med, Velcade, stopped working at the end of my first two years. I will meet with staff at the cancer center tomorrow afternoon for a 'show and tell' about Revlimid. I'm going to ask if I might not be better off trying a third kind of infusion med, although I know it means starting the weekly, then bi-monthly, then monthly routine again.

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Comments (7)

kathyg_in_mi
4 years ago
I know that my friends husband took Revlimid for many years.

He lived for 15 years after his diagnosis of MM.
chisue
Original Author
4 years ago
Kathy -- Thank you for that. All I know is that it can cause GI problems...and that it is outrageously expensive. I want to consult with the chief MD at Northwestern, Dr. Singhal, before I go forward, but I don't have a lot of time now that the Darzalex is failing -- normal thing after two years of working well. I wonder if I want to keep Revlimid in reserve for 'later' -- although I'm already 81! I just don't know enough about my options yet.
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User
4 years ago
@Lukki Irish.....I sent her a PM you needed her.
Lukki Irish
4 years ago
Hi Chisue,

When first diagnosed, Alex was on Revlimed as part of his orginal regiment and it was very effective. Once he was stable, he was on a low dose of it daily for 8 years. It was easy on his system and worked well with all of the other medications he took along the way. He’d occassionally have stomach issues, but there are medications to help with that.

As for the expense, yes it is outragiously expensive, unnecessarily so of course. This is where the Lymphoma Association came to the rescue. What the insurance didn’t cover, they did with an annual grant. I’m so sorry you’re going through this, please keep me posted on what you learn from your meeting and how you are doing lukkiirish@gmail.com **Hugs**
chisue
Original Author
4 years ago
Where would I be without my KT pals! Thanks, NIcole! Thanks, Lukki Irish!

I'll get back to you after my DH and I have met with the 'chemo team' this afternoon. I will have to curb my disappointment about the doctors not moving on this before now, but I did tell them I was worse starting in June and again in July. As my best-ever (retired) primary MDs used to say, "When all else fails, listen to the patient." <sigh>
morz8 - Washington Coast
4 years ago
Best of luck this afternoon, Chisue. I hope you find the outcome you are wishing to achieve and feel better soon.
chisue
Original Author
4 years ago
The appointment was only about Revlimid. I asked for an appointment (phone is fine) with the chief MM doc downtown and hope to hear from her about alternatives to taking this toxic and crazy-expensive stuff. I emailed by doctor here about why I'm asking for her guidance, and he seems OK with that. I know I may *have* to do this, but want to know any options.

Information yesterday included how to handle the capsules -- just short of lead-lined gloves. Double flush the toilet. No unprotected sex. ETC! I had to sign forms promising to take all precautions and acknowledging my understanding of toxicity and risks. So contrary to be told to ingest something that's dangerous to every living thing!

Walgreens is the hospital's conduit for the product, including looking for ways to make it affordable. This morning I had an email from them announcing that there are 'insurance problems'. No surprise, as I know I'll have to jump through hoops about there not being some alternative medication, and so on. There's an order for 29 capsules being held up awaiting negotiations on the charge of over $30,000. The nurse instructing me yesterday indicated it is a Yes/No on getting help; nothing in between. I suppose someone will request our IRS docs.

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