12 replies to this topic

[CML***]

My drug is Bosutinib, I generally feel like road kill. No interest, no energy, crabby, BLEAH. The good news is my PCR is dropping.

 

Are there any new CML meds coming out soon that have less side effects?

Thanks!

[thatguy]

I am, and frankly (knock on wood) have felt much better than on Gleevec or Tasigna. Nausea with Gleevec, Tasigna made my blood pressure pump up to the point I couldn't tee up a golf ball without my vision pulsing with my heart beat. I feel great on Bosulif, and hope I can stay on it with outhe issues. Very sorry for your situation with it.


Interesting you say you're crabby, I have noticed my temper has flared since I started, and little things garner a ridiculous response sometimes, honestly. I just figured it was stress from dealing with crap, but maybe the bosu?

[kat73]

Romary - I feel the way you do, but I'm on Sprycel!  I felt ever so much worse on Gleevec, which I began on.  I never had a good day for two years.  I had an improvement in all ways with Sprycel, but in the past few years I've had more and more fatigue, depression, anxiety, muscle weakness and just plain, as you said, BLEAH feeling.  I'm down to doing absolutely nothing because everything - even standing up long enough to cook - is too much effort.  It would seem, from stories on this forum, that this portrait is shared by some people, but certainly not all, and that no one particular TKI is to "blame."  I do blame the TKI, though, because of all the daily off-target hits our cells are taking - nobody can put the picture together completely and explain it, tho.  But I feel there's a cascade effect and that everything is connected.  Who's to say that they don't cause problems with energy production, with mood hormones, with muscles getting oxygenated, with digestion and metabolism, absorption of nutrients, with synapses in the brain that cause fog and memory problems?  Who's to say these things aren't affected?  Result?  Feeling lousy.  All the time.  Sorry to be of no help.

[Tucker1]

Yes I am on Bosuitinib. The first 6 mos. we're awful liver toxicity, weight loss, could do nothing and awful back pain. PCR went to zero so where'd to 400mg some improvement in energy but pain in back and joints continued so dropped to 300mgs. Now PCR has gone up and I am very nervous about results for one coming up in January. I do feel better on the lower dose but my muscles are so stiff some days I cry if I have to stand in one place. I need a lot of rest and I am real busy it takes awhile to recover. I hope it will get better over time.

[chriskuo]

I could not tolerate the 500mg dose, so I have been on 300mg for about a year (200mg morning, 100mg evening).

 

In general, I have been feeling better than on other TKIs, although I have had to deal with a pericardial effusion.

 

The best part is that it is the first TKI (after trying 4 others) on which I exceeded MMR (reaching close to a 4 log reduction most recently).

This is after 5 years of not getting much past a 2 log reduction), although I reached CCR within 6 months of diagnosis.

[Melanie]

I've been on Bosulif since it was first approved. Was never able to do 500 mg due to low blood counts. In the beginning, experienced the usual nausea and diarrhea, which has since not been an issue. The fatigue is something different though. Not everyday, but there are certainly many days that it takes all my self discipline to crawl out of bed. That in itself gets depressing, but can't say I'm really irritable. Not sure if it's really the Bosulif though as I was never able to stay on any other TKI long enough to control the CML. Once I reached MMR, I went down to 300 to see if it would be better on my counts. It was and I also felt more energetic and engaged, but my PCR went up after just a few months so I'm back on 400 and my numbers went back down. This time, I don't feel quite as bad as before so maybe the little break was helpful.

[Trey]

Recent article:

http://www.cancernet...led-tki-therapy

[thatguy]

Hey "that guy", on Drugs.com, there is an exhaustive list of side effects of Bosutinib... guess what? Irritability is one of them! So there IS a reason for being cranky! Happy New Year!

There's my hall pass. Lol

[elvis]

I had a pericardial effusion on Sprycel. My onc had to stop.  Went on a trial with ABL001.  Not helping much. May be back to Bosutinib.

It is getting increasingly complicated.  Have exhausted almost all TKI's.

[chriskuo]

How is your hemoglobin? Have you had your iron checked?

[elvis]

hgb is about 12 - 12.5 considered low but still decent as per my Onc. May get onto Bosutinib.

[elvis]

Chriskuo, can I chat with you offline on Pericardial effusion?  I had similar problems with it and would like to share and get some advice.

 

Really got scared with that stuff.

 

Please let me know how to contact you etc.

 

Regards

elvis

[chriskuo]

elvis,

 

you can use the personal messenger in the dropdown box underneath your account name to send a private message