I stopped my medication seven days before my second Hip operation when my bloods were all normal. I have been on Ibrutinib for seven years with now complete remission. I had had a jumping pulse in the early days but nothing for the last four years. However checking in and measuring my vital signs my pulse was ranging from eighty to one hundred and eighteen. Medication was given to calm it down to sixty my norm but starting my Ibrutinib after a futher seven days it is all over the place again.
The hip Op was successful, so I am told, as I am on two crutches, but I have returned with a chronic cold and have now lost my voice. As my wife's carer my son had agreed to the task until I was back and mobile but she fell down the stairs in his house and is now in hospital having broken her hip for a hip replacement. I imagine the chances of that happening is a few million to one!!
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Berrytog
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Barry - I'm so sorry your family is going through all of this. Some things aren't supposed to be shared between spouses. I hope you both have a speedy recovery and that your heart settles down and the cold is short lasting!
So sorry to hear this, Berrytog. Glad to hear that your hip op was successful, but now your wife as well!!! As you say, what are the chance of that happening!!
I can identify (in a much smaller way) with your situation. My husband broke his leg (spiral fracture of tibia and fibula) last September. That started a long story of various operations, infections and many months of severely limited mobility, when he was living upstairs in the bedroom most of the time. A couple of weeks after his accident, I started on Ibrutinib and had a lot of side effects for quite a while. (Mostly painful, swollen joints that meant I could only hobble around on crutches). It was one of the most difficult times of our lives.
However, both of us can now walk without crutches and yesterday we enjoyed a lovely walk through local woods, where the bluebells and wild garlic were delightful, alongside a sparkling stream. Such things are even more precious when we've been deprived of them for so long.
Great to know that you've been on ibrutinib for seven years and are now in complete remission. But it's disappointing that your pulse has gone erratic again, with the stopping then re-starting of Ibrutinib... Has there been any suggestion of you stopping the Ibrutinib longterm now, or at least reducing the dose?
Wishing you and your wife smooth, uncomplicated recoveries from the hip surgeries,
Can you consider going off the Ibrutinib all together. After 7 years you should be in good shape and maybe you can see if you can go without it? (Not medical advice)
I have been on Ibrutinib for 7 weeks (tomorrow). I have pre-existing AF and have had events almost every 1.5 weeks so far. I am waiting for an appointment with my heart doc (7 June) but I'm not sure that anything can be done to prevent them and wondering if the oncologist will stop the treatment which I would be very unhappy to do as the blood results thus far are showing everything is going in the right direction. Definitely find out if it is time to stop.
I am on a trial and committed to the protocol. Today my pulse has settled to 64 so it may have been the stopping and starting that triggered the Atrial Fib. In your case I would stay with it unless advised to the contrary. Stopping can cause the CLL to return with a vengence and then more difficult to control a second time. They used the ' femur' that was removed to take further bone marrow biopsy, the result will be interesting when I see it.
Of course you must follow the rules, I just thought that with such a long remission, they may be happy for you to stop. You can have medication for AF so that may be an option but ask to see a Electrophysiologist as they are the experts on heart rhythm.
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