58 replies to this topic

[Augustfirst2010]

Hello! I am new here (this is my first post), and I am glad I found this site.

My question is, I am having some severe side effects from Gleevec that is making me miss almost a week's worth of work a month, here are my side effects:

1.           Extreme intestinal cramps*, especially when sitting "up-right" in a chair/car, to the point of being temporarily debilitating. This makes it extremely difficult to go to work where I am constantly sitting for hours, as the sitting position bunches my intestines up which somehow causes the intestinal cramps to come more frequently and in greater severity of pain.

2.           Soft Acidic Stools*, which causes intense anal sphincter burning, pain, and itching, at times to the point that my eyes water. The pain is dramatically increased by any movement (walking or sitting).

3.           Debilitating bouts of painful gas*, because unlike most medications that work in the fluids and are relieved through the kidneys and urine, Gleevec remains in the intestines and is affected by food. Some foods I used to be able to eat (milk, cheese, oils, any greasy foods, any soups, etc.) I can no longer eat with the Gleevec because of adverse affects, sometimes increasing the effects of the drug to unbearable measures.

4.           Rectal Leakage*, of acidic diarrhea-like waste. Evidentially, the Gleevec is having an adverse effect upon the sphincter muscles, in that this acidic waste leaks out into the anal area causing pain and great discomfort. This painful effect is magnified when it persists, especially when it comes to washing the area, causing burning soreness, excruciating tenderness,  and throbbing pain.

5.           Bone Pain*, most of the time in my legs, debilitating to the point that I cannot walk.

6.           Increased Weight, which is adding to a previous disability received while in the military overseas. I am unable to strengthen my Core muscle group because of a thick scar tissue mass running horizontally through my abdomen, therefore leading to increased back problems and lower back muscle strains.

7.           Extremely Acidic Diarrhea*, resulting in extreme pain to the point that I have got to take narcotic pain medication in order to be enabled to do anything.

8.           Muscle Cramps*, in my legs and upper torso, painful enough to be temporarily debilitating.

9.           Nausea, which is not debilitating, but lasts for hours at a time.

10.       Headaches, at times severe (but not such as a migraine), that over-the-counter pain killers are little use against.

11.       Insomnia, which does not happen often (perhaps twice a month since taking Gleevec), but when it does, it affects my entire day to the point that I am trying to recover the lost sleep most of the day. In my profession, I cannot function adequately without making errors that affect other people's lives and can lead to law suits against the Sheriff's Department.

12.       Fatigue

13.       Constipation

While I do not have these every day, when they hit they usually incapacitate me to the point that I can't even walk without incurring severe pain...I just take Vicodine and lay around the house. What kind of side effects are some of you incurring, and are you still able to work?

Thanks!

[Trey]

Now that is the clearest definition of "sharts" I have ever seen.  And "rectal leakage" is a phrase that is now etched deep into my memory....likely forever.  Thanks a lot for that.

So welcome and -- just a wild guess -- I assume you were diagnosed 7 months ago?  So these have been going on for a while.  Many of us have recurring bowel issues, and they come in several forms.  You seem to have all the forms at the same time -- bummer.  We can sympathize; but you would prefer something more.  So here is what I have said about the subject previously:

Those  of us with CML call the Gleevec diarrhea the "sharts".  It is  definitely an issue, especially during the early months after starting  Gleevec.  Many find that it improves over time.

My  experimenting has shown that drinking those huge glasses of water or  juice all at one time, especially when taking Gleevec, causes severe  diarrhea. This makes sense in view of diarrhea being mostly water. I  drink water in moderation throughout the day and now have very few  issues. Gleevec with a meal is better than with a large glass of water  in my opinion.

Some  people have found that taking a large calcium pill daily will help,  especially with a large meal. The reason is that dry calcium carbonate  acts to absorb water in the intestines. People with IBS use this as a  treatment.
http://www.ibstales....bs_diarrhea.htm

But  I would not take the calcium pill within several hours of taking  Gleevec since it can reduce absorption of the drugs.

The  other item is to ignore advice that we should drink huge quantities of  water. That is like pushing the commode lever on the intestines --  FLUSH. Moderate intake of fluids spread throughout the day works well  for me.

Since  we are all friends here, there is also a useful practice to stuff TP in  close and personal as a first line of defense. I call this the "poor  man's Depends". It can buy time....I think I'll just leave it at that.

Here  is something I have previously provided in different formats. The  remedy to Gleevec (or the other CML meds) induced intestinal issues may  come in several ways, but there is no miracle cure. But here are my  rules for beating the "Big D":

1)  First, forget what the docs say about drinking huge amounts of water.  It just comes out any opening it can find in greater volume. Drink only  moderate amounts of liquid and space it out through the day. In fact,  test this by greatly reducing fluid intake at first and see what  happens. I do not find that drinking a large amount of water when taking  Gleevec helps, as long as I take it with a meal. I also do not drink  much fluid with any meals.
2) Stay on a consistent diet and regimen.  Gleevec does not like sudden changes or variations in routine. This  applies to eating, sleeping, and all habitual activities.

3)  Apparently Dr Druker suggests taking Gleevec after lunch so there is  food from breakfast and lunch already in the intestines to slow down any  rapid movement through the bowels.  I might also add that  splitting  the dosage in half (ask your Onc) and taking half after lunch and half  after dinner could help.
4)  Avoid most fruits. I had to avoid fruit early on, even though I love  them all. I ate an occasional apple or some blueberries. No raisins,  plums, prunes, cherries, apricots, etc. etc.  After a year or so I could  eat fruit again.
5) If the Big D comes on, it will want to stay for  several days -- like a bad relative. And it must be brought back under  control by eating and drinking less until it subsides, and by taking  Immodium or whatever. Extra calcium can also help.

Overall,  less water, less food intake, and more consistency in all activities  can help. But no real miracle cures. But I  do think that it generally gets better over time as the body adjusts,  even if it takes a couple or three years. That has been my experience.  But if I ignore my own rules, I get a reminder.

Regarding  water intake, I am not talking about severe dehydration, which is  actually hard to do. Adequate creatinine clearance can occur with lower  intake of fluids. The docs tell us to guzzle large amounts of fluids. I  think that is crap (literally).

http://www.webmd.com...inine-clearance

[Marnie]

As always, Trey. . .you crack me up!

Marnie

P.S.  I would only add that for me, taking Gleevec at night helped.  Didn't have to deal with the issues as much.

[GerryL]

Hi,

I started taking Gleevec in early July last year and wound up with diarrhea and a lot of gas in my stomach. I worked out coffee was a culprit in regard to the gas, so have stopped drinking it, I've tried having a cup of it recently and didn't get any issues from it, but found I've lost the taste for it now. I take a calcium & magnesium supplement twice a day as per directions - but don't take it too close to the Gleevec,  it may also help with your joint pain. On one of the IBS web sites it recommends eating one of the four foods which help with diarrhea - banana, rice, toast or apple sauce. I eat a banana everyday and know if I skip having one, I am reminded of the fact later in the day. I also take probiotics which can help settle the gut down and I always keep some Imodium on hand just in case.

For the occasional bouts of nausea, make sure you eat enough food with your Gleevec, I also find getting out into the fresh air for a while helps - but you can get something from your doctor to help with it.

Exercise can help with the fatigue and may also help with the insomnia, but you might need to get some of your other side effects under control first. As to weight gain, I haven't put much on, but I don't seem to be able to shift it either, even though I have increased my exercise regime.

[MJL]

On the day I took my first Gleevec pill (with breakfast)  I experienced foot and ankle cramps by 2:30 that afternoon. I remember thinking Wow! that is a powerful pill. The leg cramps still come and go, sometimes they last a few days, sometimes longer. I found that increasing my potassium intake with foods helps a lot. I too had serious stomach issues, trapped gas that was really painful, bloating, and the feeling that my intestines were all twisted up. I now make sure I take my Gleevec with a good size meal, it seems to have helped (knock on wood) The fatigue is always there for me. I try to take a power nap each day, usually at lunch time. The insomnia too, I wake up a lot during the night. I finally put a clock where I could see it when I awaken, I look at it and tell my self "Nah, not time to get up" and than go back to sleep. My sleep is disturbed but at least I stay put. It seems that the side effects can come and go with this drug. I have been on it for almost two years, just recently I started getting mild headaches, I have never had headaches before. I hope you find relief and I hope some of those side effects ease up for you. Welcome to our site, you will find loads of information and support here,

MJL.

[HeatherZ]

Sorry you had to join our club but welcome.  This is an awsome group to belong to.  Trey is always great and everyone is very helpful, even with those "embarassing" questions.  I started G in April 2010 and after reading about the GI stuff I decided to take it after dinner. I did that right from the get go and have had very minimal GI issues.  I agree with Trey - more solids and less liquids with the pill does help with the sharts.  If they get really bad, I find the Preparation H wipes (individually wrapped and as large as a baby wipe) really help to ease the pain and burning and also clean you up pretty good.  At home I keep Tucks in the bathroom at all times - for me they are like a miracle product.  I have even rubbed them on the rash I get from G because it helps take the itch away better than cortisone cream.  The muscle cramps and bone pain do subside over time.  It took a couple of months for me to get to a point where I felt more good than bad.  I even had to take a couple months off work because the fatigue, mucle cramps, and bone pain were debilitating.  Hang in there and vist us often

Heather

dx 3/2010 G400 since

[Tim76]

August,

As Trey said, we are all friends here. As far as the "big D", side effect of Gleevec, you really gave us a very picturesque description. I've been on Gleevec for five years this month and remember some of the early days. Still vivid in my memory was going out to dinner and before I even paid the check, having to relinquish the meal in the restroom. I really use to feel bad for the short turn around. I found my self following most of Trey's tips in a trial and error type approach. As my body got use to the medication, this side effect did lessen. Every once in a while, I will have a day or two relapse. I also had my gall bladder removed about a year or so before I was diagnosed with CML. Not having a gall bladder can also bring on some of the same results, to a lesser degree. I guess it's kind of a perfect intestinal storm.

Tim

[CallMeLucky]

Since no one else brought it up, I will mention it...Have you considered swtiching to a different drug?  Your description of side effects seem like they seriously impact your quality of life.  7 or 8 years ago, maybe you would have had to suck it up and deal with it, but today there are two other drugs approved for frontlilne treatment of CML; Tasigna and Sprycel.  While there are no guarantess that you won't have issues on those drugs, given your situation, I would certainly want to explore the option with my doctor.

I hope you feel better soon.

[knoppl]

Trey you made me laugh so hard my dogs came to see what was wrong.I can relate to many of these lovely experiences for sure. What has also helped me is yogurt with acidofilus daily. If I miss it, I notice!!!   I have been on Gleevec a little over a year and things have definitely gotten better. Not fun though when you are out with your kids and things start rumbling inside and they just don't understand that IT IS TIME TO GO NOW!!!!

[SunNsand]

Augustfirst2010 -

   First of all welcome! I love your way with words. Hope you don't mind, but I'd like to print your descriptions and hand it to my Dr. You have described it in a way I never could! I will use it as a powerpoint .  With me, I have problems with increased pain in my legs in connection with the "explosions". I haven't figured that one out yet...

Hope things get better with you soon.

Almost forgot, NO I am not able to work. I was just turned down by disability last week, but I am working on an appeal. They said they thought I could work part-time. I worked full-time many years and cut back to part-time and that didn't work either.

SunNsand

[MJL]

SunNsand it could be dehydration.

MJL.

[SunNsand]

MJL - hadn't thought of that, thanks. I will look into it but I'm kinda like Trey, the more I drink ... the more ... you get it.

SunNsand

[Augustfirst2010]

Thanks sunsand...I think youi were the only one that answered that part of my question.  I am trying to work, but I am missing practically one week out of every month...something that would surely have me loosing my job in the private sector, but since I am a county employee, they really can't fire me since I can still make it to work at times. But, since I am an office worker, the sitting and constant standing-sitting-getting up...etc...I'm sure I don't need to ellaborate further. Anyways, I think my doctor is sending me to Stanford University this Monday to determine whether she is going to take me out of work and put me on disability. She had no idea how much work I was missing until my work told me I had used up all my "given" sick time for the year and now requires me to have a doctor's note for time lost.

If anyone else can reply again, I am really curious how many of us can hold down a normal "9-5" job after incurring some wrath of natural causes...(there goes my poetic expression again! I am glad I could make ya'all laugh...good for the soul!!!).

[HeatherZ]

When I was first diagnosed and started G I was out almost a day or 2 a week due to side effects.  After a few months of that my doctor recomended that I take a few months off work to get extra rest and adjust to the meds.  I ended up taking 9 weeks of short term disability and then came back full time.  I think the time off really helped because I could rest/use the bathroom whatever when I needed to and also get a little more excercise when I had the energy.  When I was working I was so tired when I got home I would go right to bed.  When I first started back at work I had a few weeks that the fatigue was pretty bad again but I seem to be doing fine working the "9-5" now.  I recently had my Hgb drop pretty low and got some IV iron so my energy level has been okay.  I agree, it is tough to keep working while trying to adjust to meds and I would definitly recommend looking into short term disability from your employer.

Heather

dx 3/2010 G400 since

[akjones]

I've been lucky very little diarrhea. My problem is gas and it is very erratic. Sometimes no problem at all, other times I fart semi-continously, amuses my 5 year old son immensely. Have not been able to identify any specific foods. Regular exercise certainly seems to help with gas, at least I get rid of most of it out running by myself!

Also have fought hemmorhoids almost continously to the point of blood occasionally, this scared me and I had a colonoscopy but confirmed that it was just the hemmorhoids. I attribute this to the acid stool. Figured out that any alcohol whatsoever (1/2 a glass!) caused the blood and seem to have this in check.

Strange thing about my other side effects: headaches, mild fatigue, muscle cramps and burning eyes is that the come and go with no discernable pattern.

Andy

[Augustfirst2010]

Thanks to all who answered, it really helped!

[SunNsand]

   I was having a hard time working full-time because of health issues, never knowing I had CML. I changed to a part-time job nine mths. before I was diagnosed, so when I started my part-time job I was a new employee. I called in too much (9/10 days allowed) and was going to be fired if I called in again, it was inevitable. I had never been fired in my life so I left. It felt awful.

On another note, I have been reading and I am finding a possible link between being lactose intolerant and acidic stools. I will be talking to my Dr. about that.

SunNsand

[LoriM58]

Hi August, I am new here also. (diagnosed Feb 4th, 2011)  I don't have much advise for you, but I really hope your side effects subside soon!   sounds horrible.   I am VERY grateful that I came onto here also.   Great group of ppl with a lot of answers on any subject that comes up!   Good luck!

Since I don't have any suggestions or answers, I need to ask a question.....   Did your side effects start right away?   and then subside some once your body got used to the medication?   (I am praying you all answer yes!!  )    I have been on Gleevec 1 week today (just took my 8th dose).   Had a slight case of the shats on last Friday afternoon (took 2 Immodium right away after hearing some of your stories - hey!  I was at work, couldn't take chances).   Sat was my grandaughter's b'day party so took another Immodium before I left the house - just to be safe.    Didn't have another BM until Mon nite!!   

I have had mild headaches, maybe lasting 15 mins; no vomiting; mild leg cramp; a cpl nights of little sleep but overall, very much tolerable.   (Anybody feel like someone has a VooDoo doll of you that they are poking with a pin?   Or is that something I am experiencing that's totally unrelated?)    Today at 2pm out of the blue I felt like I hit a cement wall doing 100mph.   Bad bone pains and just hurt all over.   (hoping it is just because last nite only got 4 hrs of sleep)   Would love reassurance that the side effects NORMALLY start out bad right away then get better.

Look forward to your input - thanks!!

Lori

[GerryL]

Hi LoriM58,

I had a bit of joint pain prior to starting Gleevec - still have it on occasion in the knee and hip, so don't think it was associated with the CML. Others have written that they experience joint pain after starting Gleevec, but it eases after a month or so - once the CML starts to get under control. So hopefully this is what happens with you.

Hi August,

I've continued to work full time, but I don't do a physically demanding job so that has helped.

Gerry

[hannibellemo]

Heather,

Great suggestion with the Prep H wipes and Tucks. Tucks were a god send during and after my colonoscopy prep, very soothing!

Pat