I am looking forward to soaking the up information available here from all.
They found my CLL on routine check up 8 years ago-have been doing wait and watch until now Hemo 11.1 WBC 310 will begin Ibrutinib in about 10 days as well as Allopurinol daily to flush out kidneys.
I am an electrical contractor (now I am 67 years old--need to finish work on horse racing track)--When that is complete I will initiate my treatment-Expecting a few bumps for first month. -My wife and I are planning on withdrawing from the world except for bloodwork or to go to pharmacy for 2-3 months if my numbers improve ( I believe they will)- i plan to integrate into the nasty germ loaded-infection world contingent on blood progress.
I will keep a daily journal for a while.
Written by
wilhoitaz
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It is a fact that we are all different and when it comes to treatment, that fact holds true as far as our reactions/side effects. However, you will find posts mentioning some of the same side effects by a good many of our members.
It is not always a cakewalk as Scott has described his experience, but there are those who have minimal side effects with Ibrutinib. And you will be getting more replies from those experienced with ibrutinib, I am sure.
It is helpful, though for getting personal information, to lock your post so your and the replier's personal information is limited to only this community.
Best wishes as you learn from those here who have the experiential knowledge to impart.
There is a predicted worsening of lab results initially the first while on ibrutinib. I believe it was referred to as a “redistribution effect.” Essentially ibrutinib kicking out a lot of stuff. So your labs may appear to worsen. Mine did. Now at the start of month 8, some of my numbers were approaching or within normal range. That being said, my labs were never terrible to begin with compared with others. Your doctor should mention this effect when discussing ibrutinib.
I have had a few minor side effects and the worst of those being painful, but thankfully intermittent, mouthsores.
I am willing to put up with them and not lower dosage at this point. My doctor has offered that as a possibility. Most recently she mentioned possibly switching to acalabrutinib. Investigating costs, etc, but I’m still willing to stick it out for now. The last one was the worst, however, so I do realize they could become worse and or more frequent.
Like Scott, I had no trouble with Ibrutinib. No curly hair either, and I was looking forward to getting an affro.
Some people do have side effects and these often reduce over time but I don't think you need to hide out from the world. Maybe just avoid sick people and wash your hands a bit more. I think it's more important to drink more water, exercise, eat well and get enough sleep. I'd add a mouthwash after cleaning your teeth each day too as this can help prevent annoying mouth ulcers that can come with Ibrutinib.
Hi - I am 4 days into Ibrutinib 420mg daily. So far so good. I prefer to use 1 level teaspoon salt in a pint of boiled water for mouthwash. It is gently antiseptic, doesn't kill good bugs and is virtually free! All the other points about washing food and self, plus frequent towel changes all very sensible. Good luck from Handley
I had no major issues with ibrutinib, and I was traveling frequently for treatment and worked throughout, but I have a desk job (btw, my brother was trained as an electrician but now works selling submetering equipment). I found lowering fat intake helped avoid running to the bathroom, which did resolve itself. Good luck!
Question on your watch and wait period. Do you feel tired, hard to get up in the morning, or anything like that? I am thinking when you say wbc 310 you have (310,000) or 310-10E3 / uL. I am W&W 4.5 years and wbc approx 100. I am pretty active (retired) with sports, but find it harder to get moving in the morning. To be truthful I prefer staying still during the day but when I push myself I get over the malaise. I am now 60 years and 7 months old. Just wondering on your overall stamina!
Been living with fatigue for 2 years-getting worse-i am 40 years in construction so morning is my best time--when I hit 320,000 WBC and anemic readings hit -I had found that The fatigue and bone pain-also esophagus squeezing up -my page 2 on blood work looks excellent all good-no fat in blood-heart great-both Drs say I would be very healthy if not for CLL
I have been on Ibrutinib since January 2017 and it has been amazing. I have a life again and I feel incredibly well. The only side effect I’ve experienced is curly hair and I can live with that. My numbers never shot up like most people’s but continued to drop until they were normal. I too am 67 and am very active. I know I am one of the lucky ones and hope you will enjoy the same results. Good luck. Sally
A big welcome to the treatment world....I have been on Imbruvica 420 since January of this year.....I am a very happy camper with it. I feel better then I have in years! All is well!
Welcome to our Forum. I have been on Ibrutinib for a year now and have had side effects. I was on for two weeks when I developed a horrible rash and had to stop the medicine. Was off for three or so weeks taking prednisone when I went back on at 280 mg (2/3 dose) and prednisone for about a month when I asked my doctor if I could go back to 420 mg. She thought it a good idea and I've been on the full dose since then. Ibrutinib and Allopurinol. For me not a good combination. I did as you said felt keeping the kidney's functioning properly was best, however, I believe that it was the Allp., that gave me the rash not the Ibrutinib. That being said, the Ibrutinib is a wonderful, life saving drug and I'm doing pretty well on it now. You may find when bumping your arms or legs that you get a bad bruise. That seems to come with the program for many of us on IB. Ibrutinib is a life saver and my hope is that with all I've said and been through that you will sail through with few if any side effects. Drink a lot of water. That flushes the kidneys. My best to you in this journey. Carole
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