15 replies to this topic

[sunshineC]

I was diagnosed a little over a year ago and put on Sprycel 100mg.  I had a really tough time getting through all the side effects and became really discouraged after reading here that most people got thru the side effects within the first month, if not the first week or so.  It's been a while since I've come to this site.  Now I have severe stomach pain.  It's not every day.  I never know when it's going to hit, or how bad.  I've spent half a day in the emergency room once, and actually wished I had a couple other times, the pain was so bad.  When it started my onc told me to take Prevacid OTC, just 12 hrs apart.  That worked great for about 2 weeks. When it stopped working I went to my GP (who does know about my CML) and she gave me a prescription strength of the same thing.  That was better.  I had blood tests in October and I was down to 0.7 and have always had my numbers go down until I started trying these other things.  In Feb my numbers went up, they doubled what it was.  I quit taking the stomach medicine and just tried to get thru the pain.  My last numbers dropped even further than what it was in Oct.  Obviously the stomach medicine was working against the Sprycel.  I have had an endoscopy with negative results and am now scheduling a CAT Scan.  The idea is to rule out anything else going on.  If everything is negative, my onc will switch me to Tasigna.  I'm scared.  As much as I hate the Sprycel, I know it's killing what it needs to.  Plus, I know i'm just trading side effects when having to switch drugs.  And I couldn't even work for months when I got on the Sprycel.  I so don't want to live for months on the couch again trying to adjust to a new set of side effects.  I know it all sounds crazy.  I'm so grateful my numbers are what they are, but sometimes the price (side effects) is so much to pay.  So if anyone has experienced this kind of pain on Sprycel or can give me a little hope that switching to Tasigna may not be so bad, i'd really appreciate it.

[pammartin]

I took Sprycel until I was diagnosed with PH.  I am currently on a long term break from TKI but my oncologist has already chosen Tasigna for my next round.

 

Sprycel messed with my stomach and gave me horrible heartburn, even if taken with meals.  I would have stomach cramping but not every day.  I never kept track to see if there was a pattern but I am thinking I had a few issues every week. 

[hannibellemo]

I hated Sprycel for several months! I didn't have stomach issues, though. We aren't supposed to take PPIs with Sprycel as they can affect its absorption since it likes an acid environment.

 

This may sound counter intuitive, but you may actually not have enough acid in your stomach. You might try drinking some warm water with lemon juice in the morning or even more frequentlyespecially when you take Sprycel.

 

Good luck!

[RobbinsNest]

I've been on Tasigna for about three months now. I really can't complain. Side effects are mild at best (Compared to the other alternatives). Just make sure you are getting regular blood draws to make sure your potassium is in order. I keep reading horror stories about Sprycel. I hope you have an easier time with Tasigna. Good luck!

[dede5]

I've been on Sprycel 100 for 4 years. Just recently, I've been awakened by pain in what seems to be my intestinal area. This has happened twice in about 3 weeks' time and is so intense I can't go back to sleep. After the second time, I've made a mental note to speak with my onc about it. Of course, the first thing that crosses my mind is colon cancer. I've also wondered if it's the Sprycel, especially because my bowel habits have been seriously out of whack since I started taking it. Maybe it's just catching up. Anyway, don't know if it's either one, but when you said 'severe stomach pain' I could definitely relate. Hope you get yours straightened out.

[CMcLain]

I drink 8oz of aloe Vera juice daily and take 1T of apple cider vinegar mixed with water once daily as well. I am taking Gleevec 400 and rarely have any stomach discomfort to speak of. Years ago, before being diagnosed with CML, I had awful heartburn and indigestion. I took nexium or Prevacid twice daily plus used OTC antacids as well. I started drinking the aloe juice upon the recommendation of a friend whose mother suffered for years. She claimed it healed her stomach issues. I thought what do I have to lose. So I started drinking it and writhin a couple of months I was able to reduce dosage of Prevacid to once daily and then a few months later, I stopped taking the prescription altogether. My husband refers to the aloe juice as the, "miracle juice". He saw how much pain I was in and then basically I had no pain at all. I definitely think the aloe juice and possible the apple cider vinegar as well prevent me from experiencing pain and GI issues with the Gleevec. My doctor is aware that I use these natural alternatives and thinks it's way better then taking a prescription antacid daily. He does think it is a good idea to space it out from the time I take the Gleevec though.
Just wanted to let you and the others know in case this info could be of help to someone else also! 😊

[mlk210]

I'm 8 1/2 months on Sprycel and for the last 6 weeks I've gotten a discomfort in the upper left quadrant of my stomach. At first I thought I pulled a muscle, but I'm not sure now. It's worse when I'm driving or bend down, but nothing when I'm standing. I plan on bringing it up to my onc when I go in two weeks. I'm trying to watch more what I eat and see if that helps.

 

Please let me know if anything is found on your CAT scan. 

[JPD]

Tasigna has caused me very few problems other than hair loss on my legs, groin, and stomach.  A bit perhaps on my head, but I suffer big time from male pattern baldness and shave my head, so hard to tell.

 

Very seldom minor cases of brain fog and tiredness, but they could be non-related.

[sunshineC]

Thanks to everyone for the responses.  You hate that anyone has the kind of pain you do, but at the same time, it feels better to know that I'm not the only one going thru this.  I hope we all get these things figured out.  Better yet - how bout the doctors just find a cure for us all! 

 

A couple questions -

Mr. Tee - do you know if a duodenal ulcer would show up in an endoscopy or CAT Scan, or is it just that breath (?) test you spoke of?

 

CMcLain - Where do you get Aloe Vera juice?  What does it taste like?  (tho I think I could swallow most anything to get rid of the pain once it comes on).  I was a Prevacid junkie myself, before the CML.  I know that Sprycel needs the stomach acid to work, my onc was just trying to get a better grip on QOL for me.  (I always took it 12 hrs from when I take my Sprycel).  Everything seems to work at first, but for a very short time. 

 

Speaking of QOL - The good news is... it's not an every day occurance.  The bad news is... you never know when it's going to happen.  It's pretty hard to schedule anything knowing you may have to cancel right up to an hour before, or leave during.  Can't buy any tickets for anything ahead of time - could be a waste of money, aside from the disappointment.  Just another little corner of "SUX".  At least after my trip to the Emergency Room, I got some decent pain medicine.  Gets pretty bad sometimes.

 

JPD - I was the cry baby who was flippin out about 6 months ago over losing my hair on the Sprycel.  I finally had to get it cut short.  As soon as I did, the hair loss pretty much stopped.  I sure hope I won't have to start spazin' out again over MORE hair loss!!  (sure would be nice to not have to shave my legs tho!)  Good Thoughts....

[rcase13]

I am with JPD on the hair loss. I think I lost more on Tasigna but I was balding fast anyway so who knows. 44 years old now so it is slowly turning gray and most on top is gone now. I tried blaming that on Tasigna but my family says I was balding before nice try.

They do agree I can blame the nuclear fumes on Tasigna. They agree I wasn't stinky before Tasigna. Oddly enough that has gone away recently... Will it come back? Now that it went away my stomach doesn't hurt as much.

I suspect it will come back and visit from the to time. The only side effect that went away and hasn't come back is my bone pain. That has never come back.

[CallMeLucky]

Do you have a dairy intolerance? Sprycel has lactose in it, which is not widely known.
Also it can cause stomach acid, which is good because it is needed to properly digest it but you can't take PPI which you found out, I had same issue with low dose Protonix. If you watch your diet you may be able to get it under control otherwise just switch, Tasigna is fine for most people. It will work out.
You could try taking lactaid with pill and see if that helps, it helped me a little. Just check with your doc first.
Good luck.

[kavis]

Been on Tasigna 3 months, no real issues, and so far it's working!  EKG has been clean, don't be afraid ot it!

[Kittywatkins]

Boy you sound like you copied all of my issues with sprycel. As a matter if fact, I changed oncologists and the new one told me that being on sprycel since 2012 and still having severe stomach issues along with other side effects that I still have, it's time to change to tasigna. I'm waiting on insurance approval for the tasigna. In the mean time funny you mention this, but last night was a painful night. I get the stomach pains and burning sensation along with the most poignant gas. Can't sleep and today I'm just lazy all day. I'm the same, I don't order any tickets before hand or have had to cancel events. Or worse when I went on college visits with my son. I've hidden the pain and have had to walk away from the crowd just to release some gas. It's horrible. Hopefully tasigna works better with my side effects as well. I was scared before but now I can't wait to switch it up. I'm tired of being tired. Good luck to you. I've tried the aloe Vera juice but not the apple cider vinegar.

[CMcLain]

Hi Subshine! I buy my aloe juice at Walgreens,HEB, or Walmart. I've tried expensive aloe juice and didn't see any difference at all between expensive and for lower end. The brand is Fruit of the Earth. It comes in a gallon size container. I don't think the taste is that bad at all. You can mix it with another type of juice if need-be. I used to mix it with apple juice or crystal light but now I just drink it straight. I think it's worth a try for you! I mean, what do you have to lose, right?! 😊
Charissa

[acb]

Have they checked your potassium levels? I had some severe phantom spleen pain and then also some abdominal pain (that they thought was pancreatitis). My potassium was low (common side effect of Sprycel and maybe all TKIs). I now take prescription potassium and it helped with those side effects as well as leg cramps, etc.

[Billie Murawski]

I keep hearing a lot of good stuff about aloe vera juice and cider vinegar. I haven't tried the vinegar yet but I have taken the aloe vera, I just didn't stick with it long enough I plan on trying it again. I probably bought the mid-priced gallon bottle, it had no taste at all. I think I took 2oz in the am and 2oz in the pm. I kept it in the fridge but that wasn't necessary.  Can't hurt,  Billie