Hi all of you that responded to my question about painful lumps under the skin on thighs, arms and 1 in each breast. That gave me pause! I saw my oncologist today and told him about the 10 people who responded to my question saying you'd all had similar reaction. He was not at all dismissive. He was genuinely interested and surprised. I told him about the one individual who had it biopsied and that the results were that it was full of b lymphocytes. That made him wide eyed. When I told him that my theory was that the imbruvica was doing what it was supposed to do and that is pull the diseased cells from the tissues back into circulation. But in the cell's migration to the circulation, the cells were clumping up causing pockets of inflammation causing pain, swelling and redness. He agreed that made sense. I think because I did not blame the imbruvica outright and said it was the moving b lymphocytes that was causing the lumps he was willing to listen and did not dismiss my ideas. He's always been open minded.
Through this website I learned that the imbruvica venetoclax was not FDA approved he will go to bat for me and argue my case to get approval. Even if they do not approve the drug combination, the venetoclax was no where near as expensive as the imbruvica. Thank you to all of you who responded to my question. He took you as seriously as he does me.
I wish all of you the best of health in your battle and a future free of disease.
Pat
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Italianpainter
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have you actually tried to fill the venclexta at the same time as Imbruvica? Have the doctor submit a venclexta script and see it might not need an approval Also you do realize you will have a hard dollar co=pay reset January 1 on part d
Yeah, I know I will pay top dollar the fist time I fill the imbruvica in January. It was neatly $2000. But actually was $600 less than what my insurance quoted me.
I don't know if my "out of pocket" total for this year carries over to next year. I do know that I am in the 3rd stage of coverage. I'd need a total of $5100 out of my pocket before I would qualify for catastrophic coverage. With all of us living longer, I cannot comprehend how we haven't exhausted medicare. Still people need to know that medicare is not free and the fee I'm charged for it keeps going up. Still its not as expensive as the private plan we had before becoming medicare eligible
Http://lls.org has a grant that should cover your out of pocket if it is currently funded. They do run out of funds at some point during the year usually.
They are individually approved but not in combination as a dual drug regimen. I had read an article in the New England Journal of Medicine and it read as though they were approved but not taken together. Im doing remarkably well on just the imbruvica. My platelets are well within the normal range. RBCs are also up and normal range. And WBC has begun to drop. So I should be a good, maybe even safe candidate for the combined treatment. I think my dr willbe able to convince them. Even if they don't I will go ahead with it. The regimen for the first 5 weeks is labs early AM, then again 8 hrs later and for the first 2 weeks again at 24 hrs. Ill see my oncologist or a nurse practitioner every week also. Ill keep you guys posted
I'm very interested in what you find out about your strange lumps. I have to such lumps. They have been there for several years, but I believe they showed up after CLL emerged but not positive. One is on my right arm a little above my elbow and the other is on my left wrist.
My GP said they were likely filled with lipids. I have an appointment with my regular hematologist on Jan 6 and my specialist at MDA on the 17th of Jan. I'll bring these lumps to their attention and advise as to there opinion. My lumps have never gotten smaller. I'm hoping to be at UMRD within 2020 having been on IBR and Venetoclax for almost one year. Was on IBR alone for 3 years before this clinical trial. I wondering if I have something besides the usual bone marrow, blood, nodes, etc , to deal with. CLL lumps are not welcome.
Thanks for your post as I would have not ever considered that these lumps were CLL related.
Your dr is probably giving you accurate info that they are lipids, or lipomas. I had one of those, also and because of my diagnosis it was recommended that it be removed and biopsied. Mine was purely fat but at least I found out what it was and medicare paid for it. Without the CLL diagnosis it would have been considered cosmetic and not covered. The primary difference between the lipoma and my curious lumps was that theCLL related lumps went away after 2 weeks. Probably nuetrophils gobbled them up. They were also painful and caused a red raised area on the skin surface. When I told my oncologist about them he agreed that these were likely b lymphocytes moving from the tissue back to the circulation. That's what imbruvica (ibrutinib) is supposed to do with the cancer cells. I think they simply run into each other, clump up and cause a pocket of inflammation. Lipomas are not inflammatory. One of the responses I got back from this site was from someone who had his biopsied and it was found to be b lymphocytes. Ask your dr about having a biopsy.
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Help with results
A set-back
Imbruvica to Venetoclax
Cll lumps on head
I am now in the next phase of the Captivate Imbruvica plus Venetoclax trial. I have been Ramdomized!!!
