I have waldenstroms and going to start imbruvica after two years of immunotherapy.A y thoughts or experiences?
Waldenstroms : I have waldenstroms and going to... - CLL Support
Waldenstroms
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tsl9381
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Imbruvica or ibrutinib is excellent. You could be well on it for many years. I had a good quality of life on it. I did have diarrhoea and managed it with Imodium and buscopan. I also had arthralgia for which I used ibuprofen. If you get aches and swellings my experience was they last normally only a day or a week and then they're gone. They can arise any where and affect joints like a knee.
Imbruvica isn't a bad ride. I'm 5 months in and have had virtually none of the problems sometimes mentioned.
The worst ofbit has been extremely dry cracked skin at my finger tips, easily treated with Aquaphor or Eucerin applied frequently.
No aches or pain and only one our two very minor episodes of diahrea, treated with Imodium.
My lymph nodes ,which were the size of golf balls making my face look like a puffed up marshmallow with eyes and nose and mouth , are now back to normal size. They began shrinking within one week of starting imbruvica
The bad, I've regained about 10 of the 20 lbs I lost after getting CLL. But that's a vanity issue and I'll just diet a bit to get back to my CLL fighting weight.
The real ugly issue of imbruvica is cost. I'm so far lucky with insurance but being 66 and in the USA I'm waiting for a shoe to drop that may force me to say " I can't afford this"
Good luck to you
I've been on Imbruvica since April 2016, and the only "problem" I have is frequent migrating joint pain, mostly in my hands. Ibruprofen helps.
I wanted to say that I am 66 and on Medicare with an Advantage Plan from Humana. When my doctor spoke to me about Inbruvica, she said it was "obscenely expensive," which it is, but she sent the prescription to a specialty pharmacy that in turn called me, asked me a few questions re income, and referred me to Patient Access Network. I received a grant and what Humana doesn't pay on my monthly Imbruvica, PAN does. The specialty pharmacy FedExs the meds to me, and I pay nothing out of pocket.
Doctors should know about the ways the medications can be obtained. I'd have never known had it not been for my doctor telling me about it and the wonderful girls in her office paving the way.
As for the medical results, so far - I go every six weeks for my appointment and as of November 17, my WBC count is down from 180k (started on Imbruvica at 115k and it shot up, as the doctor expected it would) to 73k. RBC count and platelets are normal. No lymph node swelling. I go back on Dec. 29th and look forward to those results, as we go into the new year.
I will add that I am taking 3600 mg of Turmeric every day, three doses of 1200 mg. I've read that Turmeric might help, so I'm taking it with my doctor's sanction.
Merry Christmas to everyone and here's looking at a wonderful 2017.
Rjr1 thanks for the information.i am going to start imbruvica at the end of January.I will look forward to getting back to you.
I also am being treated for Waldenstrom. Ibutinib did work for me better than my previous 2 rounds of rituximab. It lowered my Igm number down to 850 which we never attained with rituximab. Other blood markers were also good. I would recommend paying close attention to your blood numbers as I had a major sudden relapse after stopping ibutinib and ended up in the hospital with high fevers and major fatigue. Now I am back to the rituximab treatments. Apparently some rare people, such as me, can have adverse issues.
Thanks for the reply.Not many of us out there with me.My current him is 3300 and off is 300 so I do gamma guard infusions every two months
Probably starting imbruvican next month.how much was your monthly cost? looking forward to hearing from you.
