CLL Support Association

My husband has Cll..

My husband has Cll..

My husband has cll and has been part of a trial program out At Md Anderson in Houston Texas.. So we did not get in remission liked we hope so now they want him to try Imbruvia .. Has any been taking this and give us some heads up..

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Usually shrinks nodes fast, but lymphocyte count can climb dramatically. Don't worry. That's OK and expected. May take months and even years to see full benefit. Most side effects, especially GI fade after a few months. Very high response rates that are durable for most with few adverse events.

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Thank you so much for your quick response.. We have not made a decision on if we are going to do a treatment of chemo again my daughter is on chemo for breast cancer and my husband doesn't want to be on chemo at the same time… and be down and out and he works full time thinking the pills would be a better choice.. Thanks

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Most feel better on ibrutinib that before they started. It is a targeted therapy, not really chemo.

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Many taking Imbruvica (formerly Ibrutinib) are doing very well on the drug. There are some good accounts of people both in the trials and taking Imbruvica outside of trials now that it has been approved at cllforum.com Do a search under both names.

Pat

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Thank you . He really just wants to doing something that would not make him so sick and still be able to work.. He is only 44 .. And our daughter has breast cancer and is on treatment . And his doctors in Houston seem to think we can Waite a couple of months to decided what to do.. Just trying to see what long term works best.. Thank you

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Dear Cinder_ella,

Sorry to hear you didn't reach remission. I am an MD Anderson patient on Ibrutinib (aka Imbruvia) for a year. My experience has been that it greatly reduced the size of my lymph nodes, increased my platelet and WBC count, and reduced the level of my fatigue. The side effects that I have experienced are minimal- joint pain, dry skin, and fingernails that tend to split, hair that changed from straight to curly. I don't know if Imbruvia will do as much for your husband, but you have wonderful doctors at MD Anderson whom you can trust. Best of luck.

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Actually her WBC went up initially as lyphocytes got flushed out of the lymph nodes by the drug where they could be killed, and then WBC has been steadily decreasing over the last year. Her bone marrow is also clearing up. The drug works well, is well tolerated and has minimal side effects. Her quality of life has been good. Signed - her spouse.

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> hair that changed from straight to curly

Me too; weird. Am 70 years old and have had wire brush straight hair all my life and suddenly it has some wave in it.

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I am in the 8th month of just Ibrutinib and 99% of nodes are gone. One teensy one to go.

WBC went up and is now minimally down (3.9)... Hemoglobin was biggest problem , had to have 2 transfusions and was later told by my cardiologist if I were taking Iron that would not have happened ... On Iron now and while it is not perfect hemoglobin is still 12.8 (livable) was 8.6 .

Biggest problem is fatigue, I try to sleep at night as much as possible and take a 1 hour siesta in the afternoon,

but at age 75 I am still fatigued most of the time. It seems that I only have "x" amount of energy each day and I have to choose what I use it on very carefully as ... the barrel is empty until the next day. fish 61

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I have been on Ibrutinib (Imbruvica) for almost 33 months. It has taken me 31 months to achieve a CR in blood and nodes. I felt like the grip of CLL was lifted in the first week of taking Ibru even when my white cells were climbing in the blood tests. When the white cell count goes up it is the cells moving from the nodes and marrow into the peripheral blood and will eventually go down. Side effects are most likely to be felt early in the use of the drug and are usually mild and transient.

I would say Ibru/Imbru is a good choice and wish you well.

WWW

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I started taking Ibru/Imbru 33 days ago. Large lymph nodes, around my neck area, groins, under arms mostly disappeared within the first 8 days. I am also on rituxan (IV infusion), once a week. According to my oncologist (I live in San Francisco) combination of the two together is much more effective than Ibru/Imbru alone. You should discuss that option with your oncologist. My WBC are off the chart but with Ibru/Imbru it is expected. Not too many side effects to worry about too much except some fatigue.

Take good care and best wishes to your family.

Shazie

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I've been taking it for 3 years. Was in the early Ib/II trial. Works great for me. No side effects except some initial diarrhea. Blood all back to normal except some residual in bone marrow -- 4% as of last October vs 40% when I started. Will get another bone marrow biopsy/aspiration this fall to see if it's down any more.

Ibrubinib isn't a toxin. Actually it doesn't kill CLL cells at all, just kicks them out of the cozy nests they've made for themselves in bone marrow and lymph nodes and back out into the blood stream where they die off at near the normal white cell life cycle. WHICH is why your WBC from a blood sample reads sky high when your first start taking the stuff, if's emptying the lymph nodes of them.

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