25 replies to this topic

[Sassenach]

I've been on Gleevec almost 2 years and not yet PCRU.  My Johns Hopkins specialist recommends switching.  He has been getting very good results with bosutinib and his patients are finding that the side effects lower than other TKIs....after the first week or two, which are expected to be pretty darn rough.

 

Anyone have advice on good anti-emetics, anti-diarrheals, and/or other management for the first couple weeks of side effects of bosutinib?  I'm stocking my medicine cabinet now....

 

Thanks for your help!

 

[kat73]

Sassenach - I can understand your impatience; it seems these days expectations of PCRU are prevalent.  But the facts are that most people never reach that level.  They do, however, really well as long as they reach CCyR and MMR.  It's fine to switch, especially if you have terrible side effects, but you could also stay with Gleevec and see if a little more time can get you below MMR.  The most important thing, as many, many people on here would tell you, is to take the TKI that gets you at or below MMR, at as low a dose as is effective, and with as few side effects as possible.  All of that has to be tailored to only one person:  you.

[gerry]

I was on Gleevec, but always had Maxalon (for the nausea) and Immodium or Gastro Stop on hand.

[Sassenach]

Oh, I'm set on bosutinib despite the GI effects--I don't mind taking a chance on leaving behind the brain fog, edema, fatigue, and so on--but I would like to weather the transition with as much sangfroid as possible. I'm young and otherwise healthy enough to try any of the TKIs, and stubborn enough to stick out a really good trial run to see about coming out the other side with minimal side effects and accelerated PCRU. My onc knows to send me home with the physician's prescribing information along with the patient info because I want the most detailed version with all the frequency of side effects.

But no sense in making the switch harder than it has to be. If there are any ways to make the first couple of weeks suck a little less, that would be great! I believe him when he says the first week will be unpleasant....

[Tucker1]

I started on Bosuitinib 2 years this summer. My intestinal issues came later stomach pain lots of gas etc and they still persist. What was hard for me at first was loss of appetite lost 10 pounds in a month and I was 116 to start my liver enzymes went up so I had to stop wait and start again. My dose at first was 500 mgs then lowered to 400 and now at 300 my dose was lowered each time for side effects and as my dose has gone down my PCR has gone up so next PCR has me worried. I continue to have lots of fatigue and back pain. I know your experience will be much better than mine. Dr. Drucker (consulted with him) says my body doesn't like TKIs but they work n my CML

[Melanie]

Although everyone usually has different experiences, I would recommend starting at a lower dose and work up if your numbers will allow you. I'm on 400 mg, but started at 200 since the end of 2012. Can't do 500, due to low counts. I also recommend taking it at night with your evening meal or a snack at bedtime, hopefully to sleep through the worst. That helped with the nausea and GI issues. Still does. Hope this helps and you find Bosulif works well for you!

[kat73]

Sassenach - Keep us posted re side effects with Bosulif.  I'll be happily surprised if there's no brain fog or fatigue.  I also go to a specialist at Hopkins and he wants to switch me to Bosulif after a couple of pleural effusions on Sprycel.  However, I found some case studies that show that Bosulif can bring on more pleural effusions, so . . . Before I ever switched, I'd have to hear from a whole bunch more people on here that their side effects are vastly improved on Bosulif.  I was very, very sick on Gleevec and it tap-danced on my kidneys and gave me toad-eyes; on Sprycel my PCR zoomed downwards and I had no edema or nausea, but I got pleural effusions and fatigue is still a problem.  My onc says fatigue comes with ALL the TKI's.  Anyway, if Bosulif truly is the miracle TKI for you, I sure would love to hear about it!  Good luck.

[xxgirl]

Hi Sassenach,

 

I just started Bosulif about a week ago, and the stomach issues are no joke!  Less than 12 hours after my first dose I was hit with terrible nausea and diarrhea that lasted for hours.  Every day since, I've had some level of stomach discomfort, so just be aware and be prepared.  Like Melanie, I've been taking my dosage at night, after dinner - not sure yet if I'm going to stick with that long term, but I've seen other people say that it helps them to "sleep through" some of the side effects.  I've been woken up with upset tummy a couple of times, but I haven't had to take anything for it yet, besides some gingerale.  Hopefully you get lucky, and your side effects are mild.  

 

You said that you're trying to get rid of the fatigue - my fatigue has been really bad on Bosutinib.  By 3pm every day so far, I feel like my energy is crashing and burning.  It's only been about a week, so hopefully it's a temporary side effect for me, and hopefully you don't get it at all.  I know that both Melanie and Thatguy, as well as many others, are doing well on Bosutinib, and I'm hoping that you (and I) will as well.

 

Good luck to you! 

[Sassenach]

Sassenach - Keep us posted re side effects with Bosulif.  I'll be happily surprised if there's no brain fog or fatigue.  I also go to a specialist at Hopkins and he wants to switch me to Bosulif after a couple of pleural effusions on Sprycel.  However, I found some case studies that show that Bosulif can bring on more pleural effusions, so . . . Before I ever switched, I'd have to hear from a whole bunch more people on here that their side effects are vastly improved on Bosulif.  I was very, very sick on Gleevec and it tap-danced on my kidneys and gave me toad-eyes; on Sprycel my PCR zoomed downwards and I had no edema or nausea, but I got pleural effusions and fatigue is still a problem.  My onc says fatigue comes with ALL the TKI's.  Anyway, if Bosulif truly is the miracle TKI for you, I sure would love to hear about it!  Good luck.

 

You must be seeing Dr. Smith too, yes?  Small world!  I'm the only CMLer that my local prescribing onc has at the moment, and he's one of 2 oncs in my rural county, so it always seems like others of us are far, far away....

 

I too was concerned about pleural effusion with Sprycel, so many people end up with some level of it.  I'm sorry those did you wrong. :-(  And diabetes runs in my family, so I wasn't thrilled about the chances on Tasigna.  I'm lucky not to have some of the renal side effects of Gleevec, but the effort it takes to find words and finish sentences is worth it to me to try something else since my numbers aren't where I want them to be.  Lost my friend of many years last week to signet ring cell carcinoma--I want to beat this thing back to where I can feel comfortable trying cessation in future.  Fingers crossed!  I am hoping to have good news for you after the first couple weeks, kat--will send you a followup.

 

I do best with taking Gleevec at night and sleeping off the worst of the nausea and diarrhea, so I'm encouraged to hear that taking it at night is working for you, xxgirl.  Stocking up on Maxalon, Pepto Bismol, etc., thanks!  It's always an adventure, isn't it....

[kat73]

You're right!  B. Doug!

[gerry]

Maxalon is a bit of a relaxant which is why it helps the nausea. Wasn't enough to put me to sleep at work, but something to be aware of. :-)

[chriskuo]

After going to Bosulif 300 after starting at Bosulif 500, I never had any stomach/intestinal issues.

I have had some fluid retention issues, but the effectiveness relative to the side effects has been a big plus on Bosulif for me.

[kat73]

Wow.  I don't know what to think.  All this plus the horrendous rashes.  When do we get to the good part about fewer side effects???!!??  I'm mystified as to how my onc thinks Bosulif is easier on people.  The last time I experienced diarrhea and/or nausea was on Gleevec in 2009 - why would I want to go back to that life?  Maybe he's just concerned with Adverse Events, not side effects.  Do these awful side effects end?  For some people, maybe not?

[Sassenach]

I'm told by Dr. Smith that the side effects go away after a week or so.  I'm not quite so optimistic as to believe that they will be *completely* gone after a week, but it could be that they taper off starting then and fade out for most.  If my insurance company would ever finalize my paperwork, I'd give you some feedback on how it's going.....   Hoping to start this week!

[thatguy]

I feel great on Bosulif. 7 months in, on 500 mg. Edit: since starting tki's, I've found persistent headaches to occur, unless I exercise every day, consistently.

[Sassenach]

So far so good on day 5. The first day I had some nausea, very manageable, and quite a bit of diarrhea, but also manageable. We were our all afternoon in The car looking at real estate. The second day, none of those but some fatigue. Since then....nothing. Perhaps some fatigue still. At least, not more than I already had. It seems like the brain fog from imatinib is lifting a little, but still too early to tell for sure (and it's allergy season, my nose is running like a faucet, all that histamine does slow one down).

Too early to tell if any of the serious side effects will emerge, but my onc's dire warnings about the first week were overstated!

[kat73]

Sassenach - So happy to read your post.  Bosutinib doesn't hit c-KIT or PDGFR, I was reading, and that would go a long way to explaining why Dr. Smith says it gives fewer side effects.  cKIT affects the skin stuff (like the melanocytes, that's why the incredibly white skin with imatinib and yes, dasatinib too; also screwing up collagen and that's why the saggy baggy jowls, and why wound healing takes so long).  PDGFR causes the periorbital (and other) edema.  Don't know about brain fog and fatigue, where they're "located" on the side effect wheel of fortune.  I'm tempted to switch, although all that has been lessened tremendously by the initial switch to Sprycel, and now on 50 mg even a little better.  At any rate, how wonderful that you haven't been visited by all that GI horror show, or the terrible rash.  Here's hoping they don't appear later!!!!! Please keep posting.

[Sassenach]

Week 2--a little rougher.  A day of diarrhea ending in fierce nausea and vomiting, another day of diarrhea, a day kinda queasy....and today was pretty darn good.  I even caught myself thinking how clear and relatively easy it was to get things done today.  Seems like the light at the end of a tunnel might not be a train....

[kat73]

Thanks for the update, Sassenach.  I'm so sorry about your misery, but elated that it appears that it can lift, along with the fog.  I am riveted by your experience.  Every once in awhile I ponder how even Dr. Smith (and all our oncs here in CML-land) must always be learning more from the patient experience; especially as one considers it was only 16 years ago that Gleevec was offered.  Now, he must treasure the feedback from his Bosulif patients, as it is all still so relatively new.

[Sassenach]

Week three was relatively uneventful. Three days in a row I had a stomachache that woke and kept me up several hours in the night. But the fatigue is far less--very stressful week that included the funeral of a dear friend, protesters at work, freelance project with quick turnaround, three work projects nearing deadline, getting a mortgage quote, and getting a house under contract. I got maybe five hours of sleep a night last week and did FINE. Bit tired at the end. Couldn't have done all that 3 weeks ago. Brain fog is better, the easier to get things done with. I am extremely happy switching! I still feel a little fatigue, little fog, a few gastro effects, but all are mild and very manageable. I hope that they will continue to improve in the next few months but if they stay the same I am still VERY happy with the switch!