Hi all!
I'm new to forum but was diagnosed two and a half years ago when I was 29.
After failing imatinib and nilotinib I've been placed on bosutinib and although I have less cognitive side effects, my legs are much more affected and I'm walking with a cane/ struggling to get up stairs n' such.
Has anyone else had a similar experience or have advice on how to manage to mobility change?
Ta' in advance!
Stewart
Hi, Stewart,
This is totally off the top of my head, but...how long were you on nilotinib? I ask because peripheral vascular side effects have become a concern. Could this be a side effect from nilotinib and not from bosutinib?
I am really curious to know what experiences with this, if any, others have had because we are contemplating a switch to bosutinib from dasatinib due to ongoing pleural effusions.
Good luck!
Pat
Hi Pat,
My heart seems to be fine. I'm monitored pretty regularly due to intolerance issues and slow responses in the blood work. For me, bosutinib has actually been an improvement over imatinib and nilotinib as they gave me quite strong psychological and mood disturbances. I do find the fatigue of bosutinib quite exhausting by comparison though, but for eveything else it's quite great. Perhaps if fatigue hasn't been an issue for you, you may work out ok on it! I do tend to be quite unlucky with whichever TKI I'm given. We have actually avoided dasatinib as I have had lung surgery in the past.
Stewart
Hi Stewart
I was diagnosed two years ago and started off on Nilotinib but had to come off because it reduced my platelet count too much. So I have been on Bosutinib for just over a year now, started on 400mg but had to reduce it to 100mg because of the effect it was having on my liver function. But the lower dose was not good for my bcr levels. Beginning to lose heart and become worried, the dose was very slowly increased over time while also taking steroids o help with the liver problems.
Very glad to say that I am back up to 400mg and no steroids and my liver function is back to normal.
But recently I have noticed a drop in my energy levels and my knees seem to be much weaker than they used to be while walking uphill or up stairs and some days I feel a little nauseous which did not happen before. My last blood test last week showed me being slightly anaemic but nothing to be concerned about. My personal opinion is that all this is due to the build up of Bosutinib in my system. If there is anyone out there who has any advice I would be very interested.
But the good news is that I have had these results from recent bcr tests :
Mid August. 1.529
Mid October 0.212
Mid November 0.182
It has taken two very long and stressful years to get to this point but I am now feeling as though I am finally beginning to get the upper hand. If anyone else is battling to reduce their bcr level don’t give up hope, keep on fighting.
How long have you been on Bosutinib and what dosage are you taking?
Best wishes
Diane
Hello Stewart,
I was eased into 300mg bosilif after failing on sprycel 50mg. My issue was balance. I was unable to paddle board after starting Bos. and when walking down long hallways I would sway and sidestep to catch myself. It was not horrible and it seems to be not quite as bad over the last few months. I will try to paddle board again come summer. I can definitely tell a difference in my ability to retain information and pick up new things. HUGE blow to my self confidence. Overall I am pretty active still. I do take milk thistle for my liver counts and the numbers are excellent. Give it time and the issues may ease up or go away as your body adapts. I have been on Bos close to a year now. I can go into more detail if you wish. Ask the forum leaders for my email if you like. I do not want to write a short story on the forums.
Steff
Hi all,
Just a wee update. My legs and fatigue remain pronounced but otherwise things seem ok. It's pretty frustrating only being able to do one thing a day and falling asleep in the late afternoon often, but I know I'm particularly unlucky in my fatigue for all TKIs. I'm occasionally getting chest discomfort and armpit pain but nothing shows up on ECGs so I guess it's nowt serious.
Julia.K: I've been taking the bosutinib for about 6months now, I would say. I was diagnosed Xmas 3 yrs ago now. We had to slowly put me on bos with a dose increase to reduce chances of side effects. Im now taking 300mg a day. I tolerate taking them pretty well compared to imatinib and the ease of taking them compared to nilotinib is great.
Diane: It sounds like we're having the same issues. My numbers are similar too. I've never managed to get anywhere near undetectable but on bos. it seems I'm slowly reducing the numbers again below 1. The knees issue in particular for me is very tough with any resistance like stairs of hills. I've actually taken to carrying a collapsable stick with me for when things get tough. It also helps people be aware of your needs if you're on public transport.
Steff: Aye, I notice a small change to my balance too but luckily not too bad. Just the occasional wobble or balance shift. The brain fog can be the most frustrating thing. It was worse on Imatinib but as Bos makes me so tired when my body needs to give in to sleep the brain fog is the first sign. I find it hard to follow anything and it feels like a dissociation of sorts. A small nap or rest usually helps though.
Wishing you all a happy new year.
Hi Stewart!
We met at Kings college for the CML presentation back in the summer and got the tube together if you recall. I am glad that Bosutinib seems to be reducing your BCR, but sorry to hear about your constant leg and knee issues are prolonged.... hang in there mate!
Just thought I’d say hi. Merry Xmas and a happy new year to you!
Alex
