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Anybody else on Bosutinib?

Side effects

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#1 CML***

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Posted 28 December 2016 - 01:12 PM

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!


CML ****


#2 thatguy

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Posted 28 December 2016 - 01:25 PM

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?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#3 kat73

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Posted 28 December 2016 - 04:23 PM

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.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#4 Tucker1

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Posted 28 December 2016 - 06:38 PM

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.
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403

#5 chriskuo

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Posted 29 December 2016 - 02:50 AM

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.



#6 Melanie

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Posted 30 December 2016 - 12:12 AM

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.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#7 Trey

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Posted 05 January 2017 - 09:45 AM

Recent article:

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



#8 thatguy

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Posted 05 January 2017 - 11:32 AM

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! :unsure: Happy New Year!


There's my hall pass. Lol
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#9 elvis

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Posted 20 January 2017 - 04:00 PM

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.



#10 chriskuo

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Posted 23 January 2017 - 01:52 AM

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

#11 elvis

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Posted 24 January 2017 - 08:25 PM

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



#12 elvis

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Posted 24 January 2017 - 08:28 PM

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



#13 chriskuo

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Posted 25 January 2017 - 03:27 AM

elvis,

 

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







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