I thought I should post an update as I am now half way through my infusions of retuxinab on the flair trial programme. I take three ibutinib tabs every day and have a retuxinab infusion every four weeks. Six infusions in total.
Everything was going well with very mild side effects and both wbc and platelet count heading in the right direction. Only just short of being within range so was very happy. That was until 10 days ago when I started to have severe leg pains. Started in my knees but now spread up and down into what I can best describe as being like growing pains (I'm 6 ft 7 so growing pains are something I suffered with in my teens). For anyone who didn't have growing pains then it is hard to describe but it is a constant and agonising pain that feels like someone is physically stretching your bones. The childhood version just occurred at night but this is 24/7. I am taking as much pain relief as I am aloud but it just isn't helping and frankly it is now at the point where it is getting me down.
I would be interested to hear if anyone else has experienced anything similar as there could be a chance that it is not related to my treatment. Hopefully I have not started growing again as 6ft 7 is tall enough!
Thanks
Simon
Written by
Deeso
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I wouldn't let my leg pains put you off as it seems like I am in a very small minority. It might even be unrelated. Although they are very debilitating, the drug is otherwise doing its stuff and is my best chance of a long term partial remission.
not being treated yet for my cll but i suffer a lot of pain from my old car accident. for pain i have physio twice a week which helps. we have a hot tub and a sauna and they help with pain. a good professional massage is often good too. i might try some of these or maybe a swim which i do a lot of in the summer. i do yoga nightly as well. too much pain medication is not effective for me. i have many comrpomised joints. a535 ultra helps too.
Deeso, I totally feel you on the joint pain! I'm also on ibrutinib and while I'm not 6'7" and no longer growing - it is a surprisingly intense kind of pain I agree! I was fine as long as I was moving and if I could have slept standing up I would have. I have been on it for 6 months and it is finally getting better - the only thing I have now is periodic leg and foot cramps and my fingers sometimes cramp up but it passes quickly. I do not have the retuxinab infusion only because I'm on a trial - comparing ibrutinib to ACP 196 - a second generation drug which they think may have an easier side effect profile - or my oncologist would have likely put me on that as well. So I take the same 3 pills like you do minus the infusion. I was told the infusion would help it empty out of the bone marrow faster so curious if your WBC & lymphocytes dropped quickly? Anyway, my numbers are heading in right direction - my platelets and hemoglobin are now within normal range though WBC still no where near the goal. In fact it plateaued this month. But my doctor is not worried - says it takes time. Hang in there, the joint pain usually resolves and if it doesn't - they can taper the drug and then reintroduce staggered dosing and it then usually resolves completely according to my oncologist at Mayo. I have also read vitamin D, calcium, biotin, magnesium, potassium can assist with joint pain. Also, be sure to drink 2-3 liters of water a day which is a lot - I put lemon in it and am able to get it all down. Also, soak in a bath of epson salts - it helps a lot actually!
Thanks for your comprehensive reply. WBC dropped from 200 to 40 in the first month and 40 or 17 in the second. Lymphocytes 38 down to 13 last month but not got a printout from before I started treatment. Will find out in 10 days where I am now.
It will be a long 3 months if this pain continues but worth it if the long term result is a long remission.
I've been on Ibrutinib for almost three months now and have the same sort of pain in my joints and like you if I sit or lay down it intensifies. I hope this subsides eventually as it can be quite debilitating. My haematologist said it should subside in time. Staying hopeful.
Good luck with it. We seem to be on a similar path having started the treatment at the same time and suffering with this horrible leg pain. Let me know if yours gets better and I will do likewise for you. Particularly if you find something we can do to help it!
I'm also in FLAIR on the IR arm and have had 15 months of treatment. I suffered with terrible arthralgia and often couldn't walk, get out of the chair, use my hand(s), even pick up a cup but this has slowly improved and now only get sporadic episodes which are nowhere near as bad. I saw a rheumatologist who said that my joints weren't being damaged which was reassuring. Over the counter pain killers were no help so I would encourage you to ask for some others from your doctor. I also get cramps in almost every muscle which drives me mad, especially at night as they ruin my sleep. They do not appear to be subsiding and probably I have to accept this is my new life.
I found that if I kept moving (as you have done) that it's not so bad so, at 60 and about 5 stone overweight, I started a 5K training programme for running. I now run about 15-20K each week and feel much better in every way.
My CLL (11q-) has responded brilliantly and, from having a wbc of >300 and with several bulky nodes of more than 9cm in my abdomen, I'm now almost in CR with less than 1 in 10,000 CLL cells in my blood with a total lymph count of just 4.0 x10/9/L.
The reason for telling you all this is to encourage you to keep going with it. I know how bad it can be but I kept telling myself how lucky I was to have this new drug and a new lease of life. I wish you well.
Forgot to say that I would endorse SunnyCA and make sure your Vit D levels are good, that could make an enormous difference. My consultant checked mine and they were on the floor - had 50,000 units each week for 8 weeks and it definitely helped to reduce the frequency of the episodes and pain.
I am on the flair trial too and have just completed the 12th month of ibrutinib on its own, I suffer with joint and muscle pain but normally manage without pain killers, it is worse on waking and lessens during the day although still aware of it, all bloods, scan and bone marrow back too normal last check, next 6 monthly tests in February, hope your levels continue to improve and your discomfort begins to decrease, best wishes, Terry
It is the ibrutinib that is the likely cause but it would appear to be irregular in its severity. I have a pretty high pain threshold but this is testing me. I'm only 54 and although I have arthritis in my lower back my other joints have been fine until now.
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3 weeks in flair trial ......
FLAIR Ibrutinib stopped because of pain
Flair Trial Completed
