Chronic Lymphocytic Leukemia (CLL) Support Group
Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.
I started treatment for CLL on October 26, 2015. Lymph nodes were so swollen in my neck that it was almost even with my ears. After only 3 weeks on ibrutinib, my neck was normal size as well as under my arms and I am sure all over my body.
I am wondering if anyone else has been given this treatment, and if so, were there any side effects. The only one that I have had is high white count which is now starting to decrease and knots under the skin up and down my legs. I have been told to take benadryl and I do so at night but do not take them during the day because they knock me off my feet.
This drug has been a life saver for me as my CLL was in stage 4 and I had started to lose weight rapidly. That has stabilized. I feel great so I know it is working and my doctor is very pleased. It is very expensive $l0,000 monthly but my insurance pays most of it and I have a grant for a year for the balance.
If you have had chemo treatment and it did not help, I strongly recommend this treatment. Don't let the price scare you, help can be found if you look for it.
I am wondering if anyone else has been given this treatment, and if so, were there any side effects. The only one that I have had is high white count which is now starting to decrease and knots under the skin up and down my legs. I have been told to take benadryl and I do so at night but do not take them during the day because they knock me off my feet.
This drug has been a life saver for me as my CLL was in stage 4 and I had started to lose weight rapidly. That has stabilized. I feel great so I know it is working and my doctor is very pleased. It is very expensive $l0,000 monthly but my insurance pays most of it and I have a grant for a year for the balance.
If you have had chemo treatment and it did not help, I strongly recommend this treatment. Don't let the price scare you, help can be found if you look for it.
With the insistence of my wife and family, I went to my doctor for an update. WBC's at 40. My platelets, well I was told to use an electric shaver as I was now a bleeder. Never heard about ibrutinib.
You are correct in saying help can be found if you look for it. I was at the right place at the right time I guess. I blindly signed up for a research study for treatment of CLL. I am now on ibrutinib for free indefinitely. I left my medication laying around like aspirin till I researched it. $10 000 in a bottle is almost unbelievable.
This is my 3rd week and it is a miracle drug. All my symptoms have subsided. I too was stage 4.
Got my first CBC last night and got a little worried. My WBC is 90. Was on average 30-50.Then I read your posting. Thanks for mentioning that you have the same side effect. I cannot see any other side effects besides achy bones. Not much else I can find on ibrutinib. It is working though. All the best and keep posting. Looks like it's just us here on ibrutinib. At $120K a year I can understand why.
Diagnosed with CLL in 2008 during prostate treatment and chemo in 2010. Started losing weight and white BC increased.
Experiencing increased lymph nodes in groin area at times painful, also fatigue at times. Mind over matter' and determined to fight the fatigue.
The current cost is $11,750 for 90 days. Thank goodness there is support! It was FDA Approved Dec 2015. Am being tracked by nurses from Biologic and Imbruvica with monthly phone followups. I believe strongly in support groups. Hang tough and keep a Positive Attitude!!