Do you ever feel ‘normal’ on TKIs

Blimey on 500mg Dasatinib I am not surprised are you sure that number is correct? If so you’ve been prescribed 5 times the required does which is 100mg and that in itself has been shown to be too high.

I’ve been on Nilotinib for 3 years almost to the day and I’d say it’s a new normal as symptoms do persist. I do have days and moments where I can feel “strange”, but I often wonder if that’s all in my head or not.

Life certainly does return to a more normal once you’ve reached all required milestones. I felt good being in CCYR and I feel great mentally being now in MMR.

It just takes time to heal emotionally, mentally and physically. It’ll come for you too. But normal I am not sure I know what that is lol. Even though my symptoms are manageable I’d welcome the day when I don’t have them. But we must remember our life does come at a price and that unfortunately is TKI toxicity. But I prefer that over the alternative anyday.

Al

Victoria

I think is it life on Bosutinib that you wanted to know about.  I started on Nilotinib but had to come off almost imediately as it knocked my platelets. I was on Imatinib for a year or so but progress was slow. The consultant then had me on Dasatinib - made good progress until it suddenly wiped out my platelets to the extent I had to have transfusions. Then moved onto Bosutinib but they started my on 500mg - I was very sick and it hit liver function.  They tried my on 400mg and 300mg and the same problems.  Although at that time 200mg was below the recommendation that's what I was put on and I've now been on that dosage for 5 years.  I take one Granistetron tablet daily for nausea although I think I could manage without it if I had to.

So yes, I have found it possible to feel completely normal on Bosutinib and ABL-BCR reliably better than log 3 reduction for 3 years.

Hope you do find that the side effects reduce.

Thank you! That’s interesting that you are managing on 200mg. I have taken four days of 200 and managing ok ‘ish’. I have read research papers discussing ‘personalisation’ of dose and shocked my consultant a little when I told him I would try and work out what works for me. I’ve altered my eating pattern to accommodate the drugs and will persevere - what choice is there!? I haven’t yet had antiemetics but that might help too. 
Thank you for your insight - it helps!!

victoria

Thanks Al that’s helpful. You’re not the only person to say 500 of Dasatinib is way too high.... what was he thinking?! No wonder he sounded panicked when I called the clinic to tell him what impact it had.......

all the very best

victoria

Maybe you already do this, however:

As rough as it may seem to imagine, I've found that rigorous exercise helps the absolute most with side effects like headaches, fatigue and aches. If you haven't, drag yourself to a gym, pop some Excedrin-( or your preference ) and get yourself winded for at least 1/2 an hour and reap the good feelings.

I was diagnosed back in Feb 19... already well advanced and had to spend a week in hospital as my spleen tripled in size, very painful and it took me 2-3 months to get full movement back in my stomach area without wincing every time I moved. Started on 400mg Imatinib on diagnosis, 18 months later Consultant moved me to Dasatinib as whilst I was stable and felt well was not improving. Felt awful on Dasatinib and after a month developed fluid on my lungs ( a known side affect) and had to stop treatment altogether for a couple of weeks until the fluid drained away naturally. Went back on Imatinib and upped dosage to 600mg.. felt well again but still stuck at 5% whilst after nearly 2 years consultant wanted me below 1%. Have now just started Bosutinib at 500mg. Only been a few days and have the common ailment of “the runs” but its controllable and only felt a bit queasy on the first day. 

Did feel pretty “normal” whilst on Imatinib but sadly it was not improving on my long term diagnosis..  my first post and very interesting to hear other peoples stories. Good to find this forum and to be able to interact with others on the same journey. 

Thank you but I’m fine really... the side affects are tolerable and the alternative is not at all desirable.. I’m not quite sure, will have to check the paperwork as I don't haven any of the old boxes left.. cannot remember the dose off the top of my head. 

Victoria, sorry to hear about your fight with this new diagnosis. First the bad news, once your docs get it under control - and they will - you will probably never feel truly "normal" again. A few say that they do and that this disease is a walk in the park. Good for them. But taking the TKI will cause side effects. Some will dissipate over time, and others can be treated with medicine or OTCs, but fatigue, gastro-intestinal, insominia and some other side effects may not ever go away.

The good news is that unlike pre-2001, this disease will not kill you. You will discover a new normal and will enjoy life again and can expect to live a long time. 

Ive now been on it for 18th months at 500g a day..  to be honest I feel good on it, always take them with a meal, I find breakfast time good.. if you do get the runs then persist as it will improve…Dave.