Imbruvica O. Any Pinon? | MyLymphomaTeam

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Imbruvica O. Any Pinon?
A MyLymphomaTeam Member asked a question 💭

Anyone have an opinion about this medication, Good or bad. Any help would be greatly appreciated.

posted December 4, 2021
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A MyLymphomaTeam Member

Thanks for the info. I have it my bone marrow, But my oncologist checked my lymph nodes, and said that she did not feel any swelling. Please keep me updated as to your progress. Some time I get so confused as too what is really going on with me, I will keep you updated as to my progress. All the best to you!

posted December 13, 2021
A MyLymphomaTeam Member

I and a couple others on here take Imbruvica. For me, it put my NHL into remission. I remember asking my oncologist how long do I have to take this med (thinking 3-4 months) He laughed and said "Well, all your life". I smiled back and said OK - what I really thought was "No shit!"

Imbruvica gave me a chance to live life to the fullest. But, not without a couple of issues:
1. The cost is incredible. For a 30 day supply for a 420mg pill the cost was $18000. I (with the help of a pharmacist) cut the dossage in half. I now take a 280mg pill, each night, for a cost of $13000 for a 30 day supply. Now that being said. Work with your doctor and have them set you up with a specialty pharmacy that caters to patients. The first time they called me they said my cost (yes I have insurance) was $3200 dollars for a 30 day dossage. I told them that I could not afford another house payment :) They said ok, let's see if we can find some help. They called the pharmaceutical company and other folks, a week later they called me back. They said Dave, can you afford $10 dollars. I tear came to my eye as I said yes. They had found a coupon for the Imbruvica that obviously cut the price.
2. I did my homework and read all about Imbruvica. It listed something like 31 side affects. I have been taking the med for 4 years and I think I have had all 31 side affects. But, as you body gets use to a med the side affects deminish. I am left with about 5ish. Some of the side affects were caused by other cancer meds like Velcade.
* Peripheral neuropathy in my feet (from Velcade)
* Cramping in my feet, legs, and hands
* Upset stomach
* Loose stools
* Easily bruises
* Easily bleeds

I still get blood draws about three times a year and see my oncologist twice a year.

I hope this give you and others a little insight into Imbruvica.

If you want to know more, please ask.
Take care and God Bless - Dave

posted December 4, 2021 (edited)
A MyLymphomaTeam Member

Yes it’s white blood cell for CLL and lymph nodes for SLL. That is the shortest answer. They treat them the same way so I have been told. I also have it in my bone marrow . It started in lymph nodes.

posted December 13, 2021
A MyLymphomaTeam Member

Thanks for the info. Did the Dr. tell you exactly what is the difference is between SLL & CLL?

posted December 12, 2021
A MyLymphomaTeam Member

I Have SLL They say it’s the same as CLL. The Dr. told me it’s a game changer for our type of lymphoma!! I hope it is for You!!! I’m with you in spirit

posted December 11, 2021

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