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Imbruvica - Do any of you have chronic lymphocytic leukemia?

Responses (2)

JTB33647 25 Jan 2014

Yes, male, 64, chemo refractory, on allogeneic white cell transplant list at Moffitt Cancer Center in Tampa. Just started Imbruvica Thursday, January 23rd. Three pills a day with large glass of water. Do not take with food and at least two hours before or after a meal. No grapefruit juice, or Seville oranges. Absolutely no side effects so far. Will update weekly or bi weekly as my follow up tests provide kidney and liver function data. They say Imbruvica may take a month to start working and my white count may continue to climb for the first month I take Imbruvica. Will post my white and red counts next time and see the drop in CLL when we get into March if it is working and how well. Sounds like it may take a few months to start working. $91 @ pill, three a day, 9K for a months prescription. I am on Medicaid till I sign up for Medicare this summer. Medicaid has approved and is paying for my prescription.

Bmhrah 19 Aug 2014

I would be interested to hear how you are doing. My husband just begun Imbruvia today (8/19/2014) for CLL and he is abut your age, 63. He was diagnosed with SLL/CLL in 1992 and has been treated 4 times and always had pretty good response (one gap between treatments was 7 years), but the disease has become more aggressive and it has only been 2 years since last treatment with Trianda and Rituxin. He has had a lot of Rituxin and Fluderabine, so the Dr. is excited to try something new. You have been on Imbruvia for several months, so it would be interesting to see how it is working for you. Thanks.

nyjeffp 8 Feb 2014

Yes, male, with prior treatments via chemo. After one month, no side effect issues as yet; white cells down by half; reds low but stable; and platelets have moved to normal range. My doctor is pleased.

Bmhrah 19 Aug 2014

I would be interested to hear how you are doing. My husband just begun Imbruvia today (8/19/2014) for CLL. He was diagnosed with SLL/CLL in 1992 and has been treated 4 times and always had pretty good response (one gap between treatments was 7 years), but the disease has become more aggressive and it has only been 2 years since last treatment with Trianda and Rituxin. He has had a lot of Rituxin and Fluderabine, so the Dr. is excited to try something new. You have been on Imbruvia for several months, so it would be interesting to see how it is working for you. Thanks.

nyjeffp 20 Aug 2014

Responding to bam... re: husband just starting Imbruvica as to my progress on this med. Thanks for asking and doing very well thank you. I recently turned 62, which was uncertain in January. My whites started declining almost from the beginning (Jan. 1) and was within range by April. However, reds took a while longer to respond but are now approaching normal range at around 11. I have gone from weekly dr./hospital visits to 6 week checks. I have not experienced any known impacts from the medication. I have a full range of metabolic tests and have been safe from organ impacts so far. I do take a series of meds to mitigate gout, bacteria, etc. When my condition was at peak I did experience some facial skin issues and my chronic sinusitis was inflamed. I am fortunate to have tolerated Imbruvica very well and my medical team plans to hold me on it as long as it continues to work. I have not required a transfusion for at least 2.5 months.

Bmhrah 20 Aug 2014

I am do glad to hear you are going so well! Congratulations! And I hope you continue to feel better. It is exciting to have this new medicine to try. My husband has never been hospitalized in the 22 years since diagnosis, but right now his biggest concern seems to be no nutraphils, so that is scary. Especially knowing that this will take a while to work. Thanks for letting us know that there can be big improvement, that's great encouragement. Praying for you.

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