Hello all, I'm Bill from Canada and I just wanted to vent and to ask what everyone thought about what's going on with my cll. To share a bit of history about my condition, I had FCR 5 years ago and after the 3 treatment I got very sick and this lead me to throwing out my back. To this today, I had fractures in my l5 to l1 and I have a bulging disc that I have seen 2 specialists about and have learned to live with it. While getting FCR I also picked up shingles. Fast forwarding to the present and this is were my question comes in. I've been on ibrutnib for 13 months now and my counts are good but the problems started about 3 months ago. My feet started to get sore and swollen and they have gotten worst, I have a hard time walking and my left knee is swollen and won't bend. I've had a x ray and a ultrasound on it and it shows a bit of water. The Dr said it will go away in time. Well, 3 months later it hasn't gone away and I'm still unable to walk with out the aid of a cane. The past 2 weeks I now have a bit of a afib and have worked a heart monitor for 48 hours and had a ecg or something like that hahah. It showed that things are normal but it might be a premature a fib. I talked to my cll specialist and he took me off the. Pills a day I took and have been taking nothing for the last week. He wants me to return to taking it but only two pills. I guess my rant or question is are the pills causing my problems after being on the drug for 13 months or I'm I just a 100 year old man in a 49 year old body. I think it'd the pills causing this and I think my body is over saturated with them. I'm open to all ideas and comments. Thank you in advance for any replies and thank you for letting me rant.
BILL
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Turntwo
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I can't comment that intelligently regarding treatment side effects as I am still W&W.
I can suggest however, not all bad things are CLL related. You feet could be CLL related or gout or diabeties, etc. I think not only do we as patients sometimes want to link everything bad to CLL, but also the whitecoats might write off a completely unrelated problem as CLL related. Push for answers and demand they keep checking for other possible causes until you feel satisfied with the answers....or that there are not going to be answers.
Now, I can definitely confirm you are in fact a 49 year old man in a 100 year old body. I also suffer from this strange affliction and am a 52 year old man in a 150 year old body. It is possible this will change back to what it should be and for both of us, I truly hope that happens.
As for back issues, I can 100% relate. I had an accident many years ago, long before CLL, and had numerous surgeries on my back. Ask your doctor about something called IDET....I dunno if that is appropriate for you, but at least for me, I went from a hobbling 30 year old, crawling out of bed in the morning, bawling like a baby from the pain, crawling on my hands and knees to my safe (I had a little one at the time) and opening it up, deciding which crappy pain killer I would have for breakfast. Though I had 3 different major type surgeries and numerous minor sort of one's I credit that IDET procedure with bringing my back pain down from a zillion to a more manageable 2 or 3 on the ouch scale and allowed me to discontinue all the pain killers within 6 months of the procedure and for the last 20 years have been able to function without that terrible type of pain.
Things can always get worse...but I like to think, they can always get better too.
Thanks Scott for your reply, I will ask about IDET on my next visit. I agree that this is a long battle that one can not give up on fighting on . I wish you all the best
Hi Turntwo, You may want to get a second opinion from another CLL specialist at a high volume site. You situation may seem unique bit that being centers see some many paitients the probability they have treated someone with your variety of items is higher. At a minimum, you candlestick assured that your on the right treatment path if they afpgree with what your current doctor is recommending. All the best on your path to turnthree!
I have been on Ibrutinib for the last 5 months and apart from some initial skin rashes which disappeared after a few months I have experienced joint and muscle pain affecting my knees, ankles, feet and elbows. Just had a bout of a very painful and swollen ball of my right foot which made any walking extremely painful, lasted 4 days and a couple of days later has nearly gone. Cant say for sure if it is the Ibrutinib but I strongly suspect it is. Many on Ibrutinib have reported this type of side effect but in my experience it does not seem to be recognised or taken seriously by the specialists. Given that the Ibrutinib has knocked my CLL right back to nearly zero I will take the muscle and joint pain as a price worth paying.
I'm on Ibrutinib and Venetoclax, and have had a lot of joint pain, particularly in my feet and ankles. My CLL specialist described it as "a not unexpected side effect", and has upped my dosage of Alpurinol to 400mg daily, which seems (so far)to be keeping the problem under control, if not actually totally eradicating it. Find and chat to a specialist is I think the best thing - good luck, I do sympathise, it's very painful.
Thank you to everyone who has taken the time to reply. I am grateful that my cll is under control and I'm just curious as to see if anyone else had a similar situation
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