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Hello! Question, side effects of Gleevec?


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#21 Trey

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Posted 10 March 2011 - 08:30 PM

Maybe we can start a new TV show: "Prep & Tuck"

Dialog:

Hannibellemo: Pass the Prep H.

Phil: Get your own, I am trying to extract an embedded Tucks.  Anyone seen the tweezers?

Michael: I believe I don't need any Tucks, because I am a "miracle child".  (Gas heard passing, followed by sharting).  Oops, maybe Trey was right, and I am not cured.  Pass the Tucks and a handi wipe.  No -- better make that a roll of paper towels.

Marnie: I'm gonna ride right outta this shart infested place on my bimmer-bike with a wad of Tucks under my.......

Trey: The cause of sharts is the posteriorily oriented accumulation of colonic pressure plus subsequent anus flapping and shartation angle of dangle......

Everyone: SHUT UP WOULD YOU -- PUT A TUCKS IN IT !!!!!

   &&&&&& THE END &&&&&&&&



#22 hannibellemo

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Posted 10 March 2011 - 08:35 PM

Hey, you started it all, Trey,  with your talk about "sharts". Can I help it if we all feel so comfortable now talking about our intestinal fortitude or lack thereof?

ROFL - TRDMF

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#23 Marnie

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Posted 10 March 2011 - 08:41 PM

How do you stuff a wad of Tucks into the appropriate spot when wearing a 1-piece flourescent yellow motorcycle suit??  And more importantly, how do you get OUT of a 1-piece motorcycle suit quickly when the sharts come upon you??  I've contemplated getting a "SheWee" (look it up, it's real) so's I can pee out of my suit.  They say you can even use it from inside your tent, as long as you purchase the extend-a-tube.

This could make an entertaining episode on your show. . .



#24 Trey

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Posted 10 March 2011 - 10:58 PM

The "wad of Tucks" can be applied with the new and improved extendable "Wad o' Tucks Insertion Device" (patent pending).  It is available at the "As Seen On TV" store.  I don't know how they would show this on TV, but there it is anyway.

The SheWee may work, or you may also be able to use the "Trucker's friend" wearable urinal with the female adapter.  Either would require some user modifications, and some assembly also may be required.  Duct tape is recommended -- double it on those really serious days.  Duct tape is available in flourescent yellow, but you may prefer chocolate brown (you know, just in case of a blowout).



#25 helenet

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Posted 11 March 2011 - 01:36 PM

Wow- no mincing of words in this site--- I say as I eat my lunch and read this from work!  As far as Trey's Preparation H-- save some to apply around your eyes!

In all seriousness—I agree with the probiotics, calcium, and magnesium—these have been my biggest helpers in the side effect front! 

As stated-- it is rougher in the first year and then things get better.  I work well over 40 hours a week-- but have no choice as I have 5 kids-- 2 in college-- and carry our health insurance.  Some days I have just sucked it up!  I have been on Gleevec since 2006 now so I am accustomed.  It was so much harder in the beginning. However - you need to experiment with such things as when is the best time to take your gleevec, what you can eat and not eat—etc.  It should all come together for you as it has for the majority of us -- and you will adjust to this new state of "normal".



#26 helenet

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Posted 11 March 2011 - 01:41 PM

Oh-- I want to mention there are some good things that eventually result from gleevec.  I now have wavy hair!  It has always been straight! And -- for most of us-- gleevec lowers bad cholesterol- I know this for a fact because it has worked for me!  And someone mentioned on another discussion that gleevec may prevent Alzheimer's—but hopefully we live that long!



#27 Marnie

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Posted 11 March 2011 - 07:25 PM

One of my kayaking friends has that extendible insertion device!!  He got it after back surgery, and was supposed to use it to put on his socks, since he couldn't bend over to reach his feet.  He discovered a very unlikely use for it, however.  While his wife was away at work, the cat brought a bunny into the house.  My friend couldn't get out of bed . . .flat on his back days after surgery. . .so he grabbed his pellet gun, shot the poor offending critter, which then crawled behind some furniture to die.  The extendible device was the only way he could remove the somewhat bloody mess, dispose of it, and clean the place up before his wife came home.  I'll let my friend know that he was using his device in the wrong manner, and suggest to him its actual use.  Should I include the Tucks, or let him buy his own? (My aplogies to any tender-hearted PETA member who was offended by this story.  My friend is a manly man who likes his weapons and his trucks.  Nice guy, nonetheless).



#28 Susan61

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Posted 12 March 2011 - 03:01 PM

Hi:  Welcome to the club that nobody wants to join, but glad they did.  I have not been on much lately due to some other health issues, but as I was reading all the responses I am sure you got some help as well as some laughs.  Thats what keeps us all going on here.  We share everything.

I have been on Gleevec for 10 years, and I still get some nausea, muscle cramps and fatigue.  A lot of the side effects have gotten better for me as time went on.

Just use some of the advice you got, and you will come up with your own way of handling lots of things to make life easier.

     Its overwhelming in the beginning, but it does get better.  Just post anything you want to at anytime.  As you can see there is always somebody around to help you out with suggestions or share their knowledge to help you out.

    You have leared a lot on your own, and you will do fine.



#29 Marnie

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Posted 12 March 2011 - 03:24 PM

Susan. . .have you gotten the blood clot thing worked out, or are you still dealing with it?  Been thinking about you lately. . .seems like lots of folks are going through rough times right now.

Marnie



#30 Susan61

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Posted 12 March 2011 - 04:00 PM

Hi Marnie:  I have not said much because I wanted this to be a CML discussion, but I am dealing with the blood clot and constant changing of my medication dose.  The leg still hurts.  I have to see a Endocrinologist regarding a long term problem with  my Parathyroid, and now they are looking for a heart  problem or Gallbladder issue.  Just been feeling too lousy to even get on here to post most of the time, unless I see something that I can contribute to that will help someone with CML.

Thanks For Your Concern



#31 Augustfirst2010

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Posted 13 March 2011 - 07:21 PM

Lori..."Did your side effects start right away?   and then subside some once your body got used to the medication?"

Some of them have subsided...the bone pain isn't as severe or frequent at the moment, and I found that taking Prilosec has taken away most of the nausea (but not all the time). I found that if I buy a family package of steak (personal favorite is Top Sirloin) and portion it out for myself to take with the Gleevec, that the steak usually helps to curb a lot of the intestinal side effects ....but, unfortunetly, I'm not made out of money so that got expensive REAL quick...and you also have to take fiber sometime later after consuming the steak, or else it will stop you up. I don't wish the effects of that on anyone a few days later when it finally . . . . comes out. I felt like I just sat in a pool of acid for hours afterward.

I can't eat anything spicy, oily, or greasy with "G" and sometimes not even afterwards, but sometimes I can eat pizza for dinner after taking "G" with lunch...it just depends upon my body chemistry at the moment, I guess. I don't have as many headaches anymore, but I am still having bad cramps at night...the kind that are so painful and strong that sometimes my calf is still notted up throughout the whole day.



#32 Augustfirst2010

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Posted 13 March 2011 - 07:27 PM

Trey..."And "rectal leakage" is a phrase that is now etched deep into my memory....likely forever.  Thanks a lot for that."

Hey, that's the best way I could put it to my doctor, she looked at me funny too until I described it in detail (poor woman).

Any idea why fruit causes such bad turn arounds?



#33 Augustfirst2010

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Posted 13 March 2011 - 07:33 PM

Lucky...

I hadn't heard of Sprycel or Tasigna until you mentioned it. The last time I spoke to my Onc about possibly switching to something else, she said that there were two more out there (I am assuming these two) but that they didn't work as well. So I told her that if this was what worked the best, then I didn't want to switch. I am only 45 and still have three children at home, and I want to do (or suffer through) whatever I have to in order to at least see them grow up and start life on their own to where they don't need me anylonger.

I will mention these two to her on my next visit and she what she says.

Thanks!



#34 Augustfirst2010

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Posted 13 March 2011 - 07:41 PM

Sun...you said,

"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."

First...thanks! I guess i don't mind the powerpoint thing, just as long as no one knows me!!!

I don't know what my doctor is going to do with me yet, she was unaware of how much time from work I was missing until they told me I needed to start bringing doctor's excuses to work for the time I missed. I took her office the paperwork for SDI last week and she had her assistant call me and tell me that she wasn't going to fill it out yet until after my appointment at UC Stanford this Monday. The only reason why I could think she would do that is she may be thinking of taking me out of work and putting me on disability.

My lawyer says that if she does, that will help tremendously with Disability because its coming from my doctor, and then, instead of ME turning in the paperwork, my lawyer is going to go down and turn it in with some legal paperwork he will prepare on my behalf. He says that this is a way to avoid being turned down...because I have both a doctor and a lawyer involved.



#35 Augustfirst2010

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Posted 13 March 2011 - 07:47 PM

Marnie..."How do you stuff a wad of Tucks into the appropriate spot when wearing a  1-piece flourescent yellow motorcycle suit??  And more importantly, how  do you get OUT of a 1-piece motorcycle suit quickly when the sharts  come upon you??"

If that was me...my motorcycle riding days would pretty much have ended!!!

I have been invovled in the martial arts and sciences since high school...it just kills me that I can no longer work out with people. About the closest I can get is just teaching (which is rewarding enough in itself), but I still miss being able to participate.

I feel like I am only a shadow of my original glorous self these days...



#36 Augustfirst2010

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Posted 13 March 2011 - 07:51 PM

akjones..."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."

"burning eyes"........I hadn't thought of that, but my eyes have been burning too, but I thought it was just allergies that I might have suddenly come in to...now I have to add this to my list!!!!



#37 acb

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Posted 13 March 2011 - 10:51 PM

I was diagnosed in July 2010, so I am fairly new to all of this too. I want to say, though, that I *think* Prilosec is one of the drugs I was told I shouldn't take because it can inhibit the effectiveness of the TKI's. I have been on Sprycel only, so I can't speak for Gleevec. I hope one of the experts will chime in about Prilosec, because I may be wrong.

Also, I think your doctor is misinformed in stating that the other two drugs are not as effective as Gleevec. While they are a lot newer (thus there is not as much known about them as far as side effects, long term effects, etc.), I would consider them to be effective. As I mentioned, I have been on Sprycel since July and I have been PCRU since October/November. I just had a PCR test on Thursday at a new oncologist and lab, so I am anxiously awaiting the results to see if they are any different. I have had some minor side effects from Sprycel, the worst ones being fatigue, some mouth sores, some sore muscles, and sporadic indigestion. I have been fortunate in that I haven't needed a coffee can, Prep H, or Tucks (yet!).

I am not necessarily suggesting you change medication; I just wanted to let you know of my experience on one of the other two. Obviously, everyone starts at a different point with differing paces and experience with the various medications available, so my results may be different from others.

I hope you are able to get some relief and some answers to your questions! Obviously, this is a great place to stay informed as well as a great place for comic relief too!



#38 Susan61

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Posted 13 March 2011 - 11:12 PM

Hi: Your question regarding Prilosec has been mentioned a lot.  I have only been on Gleevec, and it gave me horrible GERD problems.  I was put on Nexium 10 years ago, and I still take it everyday or I suffer with the Heartburn.  It has not thrown off anything with my Gleevec.  I also agree that the other new drugs like Sprycel and Tasigna have done wonders for a lot of people who could not handle the Gleevec.  I have said many times that the Gleevec can have some very strong side effects, but I choose to stay on it because it did its job for me.

     You have to take what works for you and what you can tolerate as far as side effects.  I do think it gets easier after your on your TKI for awhile.  It seems your body starts to handle it better with time.  The thing that really annoys me with  my Gleevec is the foot cramps, and it never fails I get them everytime I am driving.

The good thing is that its always my left foot and not my right.  Never did learn how to drive a car with a clutch.  Guess thats a good thing in my case.



#39 GerryL

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Posted 13 March 2011 - 11:12 PM

Hello,

There is a definite interaction between Spycel, Tasigna and Prilosec but there was nothing for Gleevec http://www.drugs.com...e,prilosec.html. though Trey has written that Prilosec is hard on the liver.

Also interesting when you read some of the potential side effects of Prilosec http://gerd.emedtv.c...de-effects.html

Gerry



#40 CallMeLucky

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Posted 14 March 2011 - 10:04 AM

Augie,

I think it would be good to have another conversation with your doctor about Tasigna and Sprycel.  I don't want to make you feel uncomfortable about your doctor, but I am very surprised at the comments she made if she was in fact speaking about these two drugs.  The newer drugs have been shown in trials to me more effective (in terms of response rates) than Gleevec and for many they have less side effects.  Now that doesn't mean one should jump to a different drug so easily.  There are a lot of good things about Gleevec, mainly longer history that helps us better understand what to expect over long term (i.e 10 years).  I myself am on Gleevec, have been for about 9 months, but I don't have the side effects you have, overall I handle it pretty well.  Still I have questioned if I should switch since people who were diagnosed around the same time as me who are on the newer drugs have acheived a faster remission.  I'm waiting to see what my next PCR shows; if I continue to do well on Gleevec and numbers are going down, I will probably stay on it and just deal with the side effects I do have, mostly fatigue and muscle aches.

It would probably be a good idea to find out how much experience your doctor has with treating CML and if she is not a expert, given the side effects you are having, you may want to get a second opinion from a CML specialist.

Best of luck, I hope things improve

BTW - I am 38 yrs old, sole provider for my wife and two young boys.  I totally get where you are coming from.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 





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