You may have noticed in my earlier post that I gave a time that my husband had been receiving Ibrutinib, which I think I said was a little over 3 years, I was wrong. At a haematology visit yesterday my husband was told he has been on it 4.5 years, at first 3 tbs per day, but now (and for the last 18 months) just two per day, due to side effects. Yesterday he was told, there is absolutely no cll at all in his blood tests, no enlarged spleen, no lymph glands, however, a time may well come when Ibrutinib may not be effective and he could revert to having cll once more. At such time he could be offered another drug, name I overlooked, but just for now, other than having four collapsed vertebrae which have severely restricted his ability to 'potter around the garden' walk around the village etc., and he is totally dependant on more pills (morphine) , but even so he is a very happy chappy just 79 years young, to think 10 years ago there was very little to control his cll due to p17 deletion.
I do hope all cllers can enjoy such similar experiences. He is very fortunate in being a patient at Sir Robert Ogden and MacMillan day unit in North Yorkshire, another one has just opened in Northallerton and there is another in Leeds.
best wishes hw
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lartington
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I remember chatting with you several years ago, HW. Your husband was having a stream of serious health complications at that time, so I was specially pleased to see your post today.
You're right that I had spleen problems... My spleen grew to be mega-enormous, pressed on my stomach so I couldn't eat much, then it burst!
The process was a bit more complicated than that. I wrote about it at the time.
Anyway, with my spleen out of the way, I was happily back on W&W for two years before CLL caught up with me again. This time I qualified for Ibrutinib as a second treatment, and have been on it for nearly 18 months now. I've had various side effects from time to time, and bloods are still not back to normal, but I feel reasonably well at the moment.
I'm sorry that your husband has several collapsed vertebrae, which limits his mobility a lot. Great to hear he's keeping cheerful though! After we've been through life-threatening incidents, it does make us grateful to be alive!
Hopefully everyone will read this post. After ten years with the most aggressive type of cll your husband is in a complete remission taking an oral drug. What more proof do people need to know that these new drugs offer a world of hope for all of us?
I'll have a glass of good whiskey tonite to celebrate your good news.
thankyou so much....... The result so far obviously is unbelievable..... BUT it has not been an easy journey, unfortunately due to other problems which my husband has/had.
As I said earlier my husband has had many other serious life threatening problems. He had pulmonary hypertension which resulted in a thromboendectorectomy surgical procedure at Papworth UK. (lung disease|). He has had sepsis five times and been hospitalised, too many times with chest infections caused by cll. The damage to his spine was caused by high dose of prednisilone (100 mg per day) to treat cll (at that time no other treatment was available for p17 deletion patients). so, I am sure you will appreciate why we are .... smiling. good wishes to you all hw
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First time post!
severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?
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Letter to my MP regarding funding of Ibrutinib
