13 replies to this topic

[MomMom]

I hate to bring this subject up again, but have any of you found relief from the diarrhea side effect from Gleevec and then have it come back with a vengence and just stay with you?  I have been on lomotil since Oct. 8 and it takes 4 or more of them to settle me on any given day.  This is becoming more than a bother. It chronic and getting worse every day.  Keeping me home. Can't always be at work, etc. Life is not  good right now.  Before I go complaining to the doc again, just thought I would ask.

Feeling a bit low.

Kay

[Susan61]

Hi Kay:  Maybe the Diarrhea is not from the Gleevec.  You said you got relief and then it came back.  I have had bowel problems on and off, and I have had 2 colonoscopies over the past 10 years.  This Dec. is 11 years since I was diagnosed with CML, and I have been told its IBS, and that I have Diverticulosis, and they have checked me for everything else imaginable.  I do not even try to figure my bowels out anymore.  Its gotten to the point where if I am going out for a few hours, and even if I feel fine I take my Imodium before I got out.  It works all day for me.

     I think sometimes its the foods we eat nowadays too.  Things I always ate just do not agree with me anymore.  Is it age?

    Hope you get some relief.  I find if I eat certain foods I get constipation, maybe you need to eat things like rice, cheese to regulate yourself.

[MomMom]

Susan, I would love to know that this was simply IBS (which is not so simple).  There is absolutley no pain associated with it and it starts as soon as I get up and sometimes in the night it wakes me up.  I am trying to get my next doc appointment before the scheduled one on Nov. 23.  This is beginning to effect everything I do and like you said, I have to arrange to go shopping or out when I can or have taken enough lomotil to stave it off for a while.

Foods don't seem to matter.  I've tried for a month to eat or not eat foods that would help or hinder. I thought maybe gluten or lactose tolerance problems, but cutting them out did not help.  Wheat, milk, ice cream, bread of any kind, raw foods like lettuce, tomato, carrots, anything you would put in a salad, I have given up.  It doesn't stop.  I started eating a pot of activia a day and I am hoping that will put some of the 'good' bacteria back.  It has to be all gone. I understand that there is something stronger to take for the diarrhea and also to replace the natural bacteria that will work more quickly, hence trying to see the doc sooner.

Any help you or the others can offer is greatly appreciated.  I am beginning to dread each day.

Kay

P.S.  I also dread going to bed each night.  The cramps are getting worse and start as soon as I lie down. This is wearing me out.

Message was edited by: MomMom

[chuckb2]

I have the same upset stomach problems as you Kay.  I am 44 so I don't think it is as much about age as it is about Gleevec.  I have been on G since May 09. I originally started taking G with my evening meal but 4 days a week or so but I would get very nauseous about 1/2 hour after my meal.  I started taking the G just before I went to bed with a glass of water. This seems to work for me as far as the nausea goes but I wake up in the night with a stomach ache almost every night & upset stomach almost every morning that lasts pretty much all day.  I have not taken any medication for upset stomach because I am not used to taking any medication other than my BP medicine. I feel like I take enough meds without adding to the list! I also am still taking Allopurinol but I don't think this is what is causing the stomach issues.

I hope you feel better!

Chuck

[MomMom]

Chuck, thanks for the reply. I know what you mean. Since dx July 2008 I have taken more meds that I have my entire life. That's why I decided trying activia would be a better solution if it works.  As of this morning, I seem to be a little better.  I am optimistic.  Thankfully, I work in an atmophere of compassion and can come and go (pun intended) as I need to and still get paid.  Woo Hoo! for that.  I feel certain that it has been the Gleevec with a dosing of anti-biotics for a bacterial bronhitis that I had about month ago.  Instead of intermittent problems, it has become an all out 'round the clock attack.

I take my G at bedtime, too.  If I am nauseated, I am sleeping through it.  Daytime dosing made me really sick feeling.  Earlier this year I had a stomach ulcer and it was causing some pain.  You might get that checked out.  G is so strong and can cause some serious GI problems other that the one we fondly refer to as "sharts."  At least my sense of humor is intact!

That my brain is, is in question.

Hoping for another tomorrow.

Kay

[janekaye]

Hi all,

The issues your'e talking about are the very ones which eventually led me to ask my oncologist for a switch to Sprycel.  Between the digestive issues and the edema in my face and legs, it was really hard to deal with on a daily basis.

And yes, I understand how the digestive issues start to rule your life - it's pretty unbelievable to the average person, but it's very real for us.  There are days when you literally can't leave the house!!

With Sprycel, there are definitely still issues and some of the same ones, but as I explained to my oncologist, they only occur about twice a day, and not CONSTANTLY!  That's a change for the better in itself.

Gleevec was never easy on my stomach, and while taking it, I had an endoscopy, a colonscopy, an iron infusion, and two "camera" procedures (where you swallow the small camera and get monitored for 8 hours).  In the end, it appeared that Gleevec was causing or aggravating a slow intestinal bleed.  After switching to Sprycel, my iron has stabilized, and the hct and hemoglobin are in the normal range again.

All I can say is that I feel real empathy for both of you with regard to the stomach issues.  I hope you find some relief - for awhile a combination of Metamucil and immodium worked for me, but that wore off after awhile.

Take care,

-janekaye

[MomMom]

janekaye, I am better today, and simply praying that this is the end of this episode.  The only difference is that I am eating activia. If it continues to work, I will buy stock in the company.  It remains to be seen that it will be the answer. At my next appointment if the edema and tummy problems are still serious, I will ask the doc about other treatment.  I had an iron infusion in Feb., due to a small ulcer and bleeding presumably due to Gleevec. Had treatment for the ulcer.  I never had one before.  My counts were up in August to near the norm for red cells, etc. If they stay there I will be surprised.  My fatigue is back which I have been blaming on the GI problems. Could be a combination.  I take an anitdepressant and I still feel depressed about my life which except for this is very blessed and good. Depression is another thread.

Take care of yourself and thank you caring. We are all in this together.  Why does that give us hope?  This is a nasty business.

Kay

[janekaye]

I'm so glad that you're feeling a little better - maybe the Activia will be the key.  I just never could find the right combination of meds or foods that would make a real difference, and after my weight dropped 15 pounds (not necessarily a bad thing for me, but not that way), I was ready for a change.  Certainly, the Sprycel has not totally changed the stomach issues, as I said, but just improved them and decreased the frequency.  Everybody posting about gas, however, is absolutely CORRECT!!!

Like you, I also take an antidepressant, and I'm sure it does help.  I just think it's hard for all of us to deal with a lifelong disease - you're right, it's a nasty business, and a scary one.  It's difficult for anyone who's not experiencing it to really understand --- in fact, they probably just can't even if they want to.  And if you do act discouraged, people tend to think you're shallow, considering what the alternatives are - I think we all understand that, but as a friend of mine says to me all the time, "it's all right to be unhappy about the situation."  Nevertheless, I end up feeling guilty anyway.  Oh well.......what can you do?

It's good to share - that's for sure.  And it helps us all, I think.

Take care,

- janekaye

[MomMom]

Hi, all.  I saw my onc this week and he has dx'd me with another ulcer and diverticulitis, along with raynaud's  (blue hands were freakin' me out).  Hopefully the tummy problems will get better.  Otherwise, blood counts were good.

Kay

[Susan61]

Hi Kay:  Gosh no wonder you are having tummy trouble.  I know I have Diverticulosis, and I am so crampy all the time.  When it goes into Diverticulitis you have to really be careful, and then Raynaud's Disease has its own symptoms.

    I hope you can get it all under control now that you know what your dealing with.  It is so hard, no matter what you eat or do not eat nothing helps sometimes.  I see others have posted the same thing.

    Try to enjoy your Birthday.  We are going to dinner shortly to celebrate mine, and no idea what to eat etc.

    What a way to live, but we are blessed in many ways.

[Leukemia_Stupemia]

They prescribed me Lomotil also... it was a lifesaver for 2 days - and then the diarrhea came back with a vengence... I am not on Gleevec, but on Revlimid which has a side effect of diarrhea.  I have been drinking a lot of ginger ale and sprite to help calm my belly... Also, not sure if you have a dollar store around you, but they sell something called "Elemintz" which is pure peppermint... I  keep them by my bed, in my purse, etc. because they really do help!

Good luck to you!

Jacquelyn

http://www.caringbri...t/jacquibuckley

[MomMom]

Well, I'm back at work and seem to be doing better on the meds for the GI problem. Gave me a huge refill of lomotil.   Also, twice the dose of Lasix and that has really made a difference in how I feel.  If I had realized earlier that I had a 'real' problem that wasn't just the Gleevec (although related) I would have already seen the doc.  If I am not a lot better he will have me back in a week or so, otherwise I see him again in 6 wks.  Then to a gastro doc if I am having any signs of a problem.  The tummy issues have already quietened down some and allow me to at least function.  Whew. It was getting really bad.  The Raynauds symptoms have only shown up a few times.  It's mostly freaky to see. No pain as now.

Thanks for the good words and info, Jacquelyn, Susan,etc..  My daughter works in the medical community as a therapist and one of her buddies went to a hematology convention, seminar or something and wanted to take my records to shop my illness around to see if I was getting the right treatments.  She needed to feel needed I guess.  I'll let you all know what he said. He told her CML is pretty rare.  Well, Well we are rare breeds indeed.

Have a good day.  I started golf lessons at lunch today and it was pretty good.  Different for me. My daughter thinks I've started a 'bucket list.'

I just had a chance to get free lessons and took it.

Kay

[Leukemia_Stupemia]

That is awesome!! Make sure to continue doing things that you enjoy If we all sat inside and felt sorry for ourselves, we would have a much worse prognosis and outlook on life... Continue golf if you enjoy it I took lessons when I was little - and loved it

[MomMom]

Yes, you are exactly right.  I try to keep as normal as possible and do try new things.  This one is really new for me but I think I'm gonna like it very much.  I'm not the most athletic person you'll ever meet, but I have some agility left!

Happy Birthday to you, too, Susan.  My daughter is coming tomorrow to take me to lunch and my son and his wife and children are doing dinner for me.  Why is it we always have to eat?  Well, I like to eat.  My plan if the weather permits is to go to the Sweet Potato festival on Saturday and meet up with an old school buddy and enjoy the day.  And before you ask, I was once a  runner up to the Sweet Potato Queen.  And, that was way before there was a book!

Kay