Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. _________________________________________________________________ Microsoft brings you a new way to search the web. Try Bing™ now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 I had no pains and cramps on Sprycel, no side effects at all to speak of when I was first on it. I was allowed to take 35 mg in the morning and 35 at night, so it's ok to split the dose. Bobby On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@...>wrote: > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > pains -- not to say that they're so severe, just that it's an unfamiliar > feeling. > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > in the a.m. and half in the p.m. to eliminate this side effect, assuming > it's a benign affair, but I haven't heard back from him. He had instructed > me to take two 50 mg. pills at the same time. > > _________________________________________________________________ > Microsoft brings you a new way to search the web. Try Bing™ now > > http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 I have been on Sprycel for a couple of years now and yes, if I do not drink a lot of water i will have severe stomach cramping. I do not know about spliting your dosage i take 90 mg in the am without food but have to eat within a couple of hrs. Hope u do well on Sprycel. I have weight gain but can live with this the part I don't like is the no tanning Anita ________________________________ From: Rosen Lum <rrosenlum@...> Sent: Tuesday, June 23, 2009 3:50:16 PM Subject: [ ] New to Sprycel Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. _________________________________________________________________ Microsoft brings you a new way to search the web. Try Bingâ„¢ now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Sorry that you are having this problem I am not having such problems with a single 70mg tab at bedtime Your system should adjust to your 100mg soon. I do have a body rash similar to the Gleevec one. Halff From: Rosen Lum <rrosenlum@...> Subject: [ ] New to Sprycel Date: Tuesday, June 23, 2009, 4:50 PM Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. _________________________________________________________________ Microsoft brings you a new way to search the web. Try Bing™ now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Shoot! And here I was hoping I was going to shed those " Gleevec pounds, " ha ha! From: awristen1@... Date: Tue, 23 Jun 2009 19:40:29 -0700 Subject: Re: [ ] New to Sprycel I have been on Sprycel for a couple of years now and yes, if I do not drink a lot of water i will have severe stomach cramping. I do not know about spliting your dosage i take 90 mg in the am without food but have to eat within a couple of hrs. Hope u do well on Sprycel. I have weight gain but can live with this the part I don't like is the no tanning Anita ________________________________ From: Rosen Lum <rrosenlum@...> Sent: Tuesday, June 23, 2009 3:50:16 PM Subject: [ ] New to Sprycel Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. __________________________________________________________ Microsoft brings you a new way to search the web. Try Bing™ now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Yeah, a lot of these things undoubtedly blow away after the first few months. From: halfphast@... Date: Tue, 23 Jun 2009 21:23:48 -0700 Subject: Re: [ ] New to Sprycel Sorry that you are having this problem I am not having such problems with a single 70mg tab at bedtime Your system should adjust to your 100mg soon. I do have a body rash similar to the Gleevec one. Halff From: Rosen Lum <rrosenlum@...> Subject: [ ] New to Sprycel Date: Tuesday, June 23, 2009, 4:50 PM Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. __________________________________________________________ Microsoft brings you a new way to search the web. Try Bing™ now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Hi , For what it is worth, I shed my " Gleevec pounds " even while on Sprycel for two weeks... [ ] New to Sprycel Say, is Sprycel linked with abdominal pain or cramps? I've never had such pains -- not to say that they're so severe, just that it's an unfamiliar feeling. I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half in the a.m. and half in the p.m. to eliminate this side effect, assuming it's a benign affair, but I haven't heard back from him. He had instructed me to take two 50 mg. pills at the same time. __________________________________________________________ Microsoft brings you a new way to search the web.  Try  Bing� now http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Friends, I was reading the F.Y.I's on the emails of where Zavie wanted to know if there was any black box warnings, the ingredient in Sprycel is it contains an added ingredient called: lactose monohydrate. I looked it up in google and it mentioned it was a milk derivative, if this is so, I wonder if the muscle cramps you are experiencing is due to Milk. If one is lactose intolerance, doesn't added milk to a Sprycel make one more sicker, or bloated? Dory Doggie ________________________________ From: Bobby Doyle <rmcd1929@...> Sent: Tuesday, June 23, 2009 6:11:13 PM Subject: Re: [ ] New to Sprycel I had no pains and cramps on Sprycel, no side effects at all to speak of when I was first on it. I was allowed to take 35 mg in the morning and 35 at night, so it's ok to split the dose. Bobby On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@...>wrote: > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > pains -- not to say that they're so severe, just that it's an unfamiliar > feeling. > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > in the a.m. and half in the p.m. to eliminate this side effect, assuming > it's a benign affair, but I haven't heard back from him. He had instructed > me to take two 50 mg. pills at the same time. > > _________________________________________________________________ > Microsoft brings you a new way to search the web. Try Bingâ„¢ now > > http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 WOW..That's interesting..Wonder if Gleevec has lactose also..I am lactose intolerant..Might explain a few thingss if it does..Thanks for sharing this info I will now have to research Gleevec for this info.. Thanks SharonS In , Dory Doggie <hellodoggie0009@...> wrote: > > Friends, > I was reading the F.Y.I's on the emails of where Zavie > wanted to know if there was any black box warnings, > the ingredient in Sprycel is it contains an added ingredient > called: lactose monohydrate. I looked it up in google > and it mentioned it was a milk derivative, if this is so, > I wonder if the muscle cramps you are experiencing is due > to Milk. If one is lactose intolerance, doesn't added milk > to a Sprycel make one more sicker, or bloated? > > Dory Doggie > > > > > > ________________________________ > From: Bobby Doyle <rmcd1929@...> > > Sent: Tuesday, June 23, 2009 6:11:13 PM > Subject: Re: [ ] New to Sprycel > > I had no pains and cramps on Sprycel, no side effects at all to speak of > when I was first on it. I was allowed to take 35 mg in the morning and 35 > at night, so it's ok to split the dose. Bobby > > On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@...>wrote: > > > > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > > pains -- not to say that they're so severe, just that it's an unfamiliar > > feeling. > > > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > > in the a.m. and half in the p.m. to eliminate this side effect, assuming > > it's a benign affair, but I haven't heard back from him. He had instructed > > me to take two 50 mg. pills at the same time. > > > > _________________________________________________________________ > > Microsoft brings you a new way to search the web. Try Bingâ„¢ now > > > > http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Sharon, Are you on Gleevec 400 mgs.? What are your side effects? Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a very difficult time with the water that happens to be the edema in my face, which swells, and causes severe ear pain. Dory Doggie ________________________________ From: serenitywon <serenitywon@...> Sent: Wednesday, July 1, 2009 1:52:18 AM Subject: Re: [ ] New to Sprycel WOW..That's interesting. .Wonder if Gleevec has lactose also..I am lactose intolerant.. Might explain a few thingss if it does..Thanks for sharing this info I will now have to research Gleevec for this info.. Thanks SharonS In groups (DOT) com, Dory Doggie <hellodoggie0009@ ...> wrote: > > Friends, > I was reading the F.Y.I's on the emails of where Zavie > wanted to know if there was any black box warnings, > the ingredient in Sprycel is it contains an added ingredient > called: lactose monohydrate. I looked it up in google > and it mentioned it was a milk derivative, if this is so, > I wonder if the muscle cramps you are experiencing is due > to Milk. If one is lactose intolerance, doesn't added milk > to a Sprycel make one more sicker, or bloated? > > Dory Doggie > > > > > > ____________ _________ _________ __ > From: Bobby Doyle <rmcd1929@.. .> > groups (DOT) com > Sent: Tuesday, June 23, 2009 6:11:13 PM > Subject: Re: [ ] New to Sprycel > > I had no pains and cramps on Sprycel, no side effects at all to speak of > when I was first on it. I was allowed to take 35 mg in the morning and 35 > at night, so it's ok to split the dose. Bobby > > On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@. ..>wrote: > > > > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > > pains -- not to say that they're so severe, just that it's an unfamiliar > > feeling. > > > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > > in the a.m. and half in the p.m. to eliminate this side effect, assuming > > it's a benign affair, but I haven't heard back from him. He had instructed > > me to take two 50 mg. pills at the same time. > > > > ____________ _________ _________ _________ _________ _________ _ > > Microsoft brings you a new way to search the web. Try Bingâ„¢ now > > > > http://www.bing. com?form= MFEHPG & publ= WLHMTAG & crea= TEXT_MFEHPG_ Core_tagline_ try_bing_ 1x1 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 That is fascinating! From: hellodoggie0009@... Date: Tue, 30 Jun 2009 23:29:56 -0700 Subject: Re: [ ] New to Sprycel Friends, I was reading the F.Y.I's on the emails of where Zavie wanted to know if there was any black box warnings, the ingredient in Sprycel is it contains an added ingredient called: lactose monohydrate. I looked it up in google and it mentioned it was a milk derivative, if this is so, I wonder if the muscle cramps you are experiencing is due to Milk. If one is lactose intolerance, doesn't added milk to a Sprycel make one more sicker, or bloated? Dory Doggie ________________________________ From: Bobby Doyle <rmcd1929@...> Sent: Tuesday, June 23, 2009 6:11:13 PM Subject: Re: [ ] New to Sprycel I had no pains and cramps on Sprycel, no side effects at all to speak of when I was first on it. I was allowed to take 35 mg in the morning and 35 at night, so it's ok to split the dose. Bobby On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@...>wrote: > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > pains -- not to say that they're so severe, just that it's an unfamiliar > feeling. > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > in the a.m. and half in the p.m. to eliminate this side effect, assuming > it's a benign affair, but I haven't heard back from him. He had instructed > me to take two 50 mg. pills at the same time. > > __________________________________________________________ > Microsoft brings you a new way to search the web. Try Bing™ now > > http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_try_b\ ing_1x1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 So has anyone heard how is today???? Sharon T Re: [ ] New to Sprycel I had no pains and cramps on Sprycel, no side effects at all to speak of when I was first on it. I was allowed to take 35 mg in the morning and 35 at night, so it's ok to split the dose. Bobby On Tue, Jun 23, 2009 at 4:50 PM, Rosen Lum <rrosenlum@...>wrote: > > Say, is Sprycel linked with abdominal pain or cramps? I've never had such > pains -- not to say that they're so severe, just that it's an unfamiliar > feeling. > > I asked my doc (Dr. Brad of UCSF) if I could split up my dose, half > in the a.m. and half in the p.m. to eliminate this side effect, assuming > it's a benign affair, but I haven't heard back from him. He had instructed > me to take two 50 mg. pills at the same time. > > __________________________________________________________ > Microsoft brings you a new way to search the web. Try BingT now > > http://www.bing.com?form=MFEHPG & publ=WLHMTAG & crea=TEXT_MFEHPG_Core_tagline_t ry_bing_1x1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Dory, I started on Gleevec 400 mg in May 08.My Dr.didn't think I had good enough response so he increased me to 600 mg after a few months.I reduced it back down to 400 mg to help with my side effects. I have edemma in my face and abdomin I do get rashes occassionally I do have red flushes all the time I am at least two shades whiter than my previously ghostly color My vision is really bad now.Got glasses and still very blurred vision I get headaches now never did prior to gleevec My hair is thin and falling out and texture has changed I have increased bone/joint/muscle pain I have low body temp now(96.5,95.8) My right arm is a different temp than my left(noticable temp) I have abdominal distress(bloat,gas,terrible smell,cramps)Diarhea and constipation in same B/m Sorry TMI I have low right front swelling like prego on right side only and overall swell from flat to 5 months prego look at other times. I have hot flashes occassionally,anxiety sometimes. I have alot of " other " health issues so who knows what's related to Gleevec or not.I know I have alot of pain.I also have severe fatigue.I am Vit D,A,K,Retinal,Iron Deficient.I am also Diabetic.I have alot of water retention also.If I take my lasix I can lose 6 pounds in a day or two.I have had some weight gain. I originally gained 10 pounds when I started Gleevec 400.I then stayed the same when they increased my dose to 600.I lost 10 pounds when they decreased me back down to 400.I am now going up and down 10 pounds in a week.ugh.. I am disabled and pretty much bed ridden.I hurt all the time and fatigue is the biggest issue for me. Good luck with your retention.Are you getting the rashes also? Thanks SharonS In , Dory Doggie <hellodoggie0009@...> wrote: > > Sharon, > Are you on Gleevec 400 mgs.? What are your side effects? > Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a very difficult time with the water that happens to be the edema in my face, which swells, and causes severe > ear pain. > > Dory Doggie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Sharon S Some of those things all happened to me while on Gleevec. Especially the stomach issues. It was awful-I lived on Imodium Then the rash came on for 6 months it would not go away. I was a walking monster. I could not take it anymore and told my Dr. I wanted a better quality of life and he put me on Sprycel. That was much much better for three years then I got puffy, lost weight, plural effusion you name it I had it. So they took me off that and I have been on Tasigna for over a year and I am a new person. I know I should not say this because everyone reacts differently to medication and I take no other medication and have no other health issues, but QOF is very important to me. I am 66 years old and feel 40. Honestly!!!!! But who knows how long this Tasigna high will last??? I am also PCRU and have been. I promote Tasigna at this point, but when that stops I have no idea where I will go. Talk to your Doctor-I think you need a break from Gleevec. Sharon T _____ From: [mailto: ] On Behalf Of serenitywon Sent: Wednesday, July 01, 2009 11:09 AM Subject: Re: [ ] New to Sprycel Dory, I started on Gleevec 400 mg in May 08.My Dr.didn't think I had good enough response so he increased me to 600 mg after a few months.I reduced it back down to 400 mg to help with my side effects. I have edemma in my face and abdomin I do get rashes occassionally I do have red flushes all the time I am at least two shades whiter than my previously ghostly color My vision is really bad now.Got glasses and still very blurred vision I get headaches now never did prior to gleevec My hair is thin and falling out and texture has changed I have increased bone/joint/muscle pain I have low body temp now(96.5,95.8) My right arm is a different temp than my left(noticable temp) I have abdominal distress(bloat,gas,terrible smell,cramps)Diarhea and constipation in same B/m Sorry TMI I have low right front swelling like prego on right side only and overall swell from flat to 5 months prego look at other times. I have hot flashes occassionally,anxiety sometimes. I have alot of " other " health issues so who knows what's related to Gleevec or not.I know I have alot of pain.I also have severe fatigue.I am Vit D,A,K,Retinal,Iron Deficient.I am also Diabetic.I have alot of water retention also.If I take my lasix I can lose 6 pounds in a day or two.I have had some weight gain. I originally gained 10 pounds when I started Gleevec 400.I then stayed the same when they increased my dose to 600.I lost 10 pounds when they decreased me back down to 400.I am now going up and down 10 pounds in a week.ugh.. I am disabled and pretty much bed ridden.I hurt all the time and fatigue is the biggest issue for me. Good luck with your retention.Are you getting the rashes also? Thanks SharonS In groups (DOT) <mailto:%40> com, Dory Doggie <hellodoggie0009@...> wrote: > > Sharon, > Are you on Gleevec 400 mgs.? What are your side effects? > Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a very difficult time with the water that happens to be the edema in my face, which swells, and causes severe > ear pain. > > Dory Doggie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Sharon, what do I know? Not much when it comes to the art and science of CML treatment from a medical standpoint. But as a layperson it seems to me you should not have to suffer such an abundance of side effects when there are alternate medications available. I was switched from Gleevec to Sprycel to sidestep the severe fatigue and pain you mention, and which I had with Gleevec. It's too soon to say how it's faring. Hair loss and some of the other stuff -- heck, we can live with that, right? But my main message is, I hate to hear that you are battling these difficulties if an alternative is available. With much compassion from From: serenitywon@... Date: Wed, 1 Jul 2009 18:08:56 +0000 Subject: Re: [ ] New to Sprycel Dory, I started on Gleevec 400 mg in May 08.My Dr.didn't think I had good enough response so he increased me to 600 mg after a few months.I reduced it back down to 400 mg to help with my side effects. I have edemma in my face and abdomin I do get rashes occassionally I do have red flushes all the time I am at least two shades whiter than my previously ghostly color My vision is really bad now.Got glasses and still very blurred vision I get headaches now never did prior to gleevec My hair is thin and falling out and texture has changed I have increased bone/joint/muscle pain I have low body temp now(96.5,95.8) My right arm is a different temp than my left(noticable temp) I have abdominal distress(bloat,gas,terrible smell,cramps)Diarhea and constipation in same B/m Sorry TMI I have low right front swelling like prego on right side only and overall swell from flat to 5 months prego look at other times. I have hot flashes occassionally,anxiety sometimes. I have alot of " other " health issues so who knows what's related to Gleevec or not.I know I have alot of pain.I also have severe fatigue.I am Vit D,A,K,Retinal,Iron Deficient.I am also Diabetic.I have alot of water retention also.If I take my lasix I can lose 6 pounds in a day or two.I have had some weight gain. I originally gained 10 pounds when I started Gleevec 400.I then stayed the same when they increased my dose to 600.I lost 10 pounds when they decreased me back down to 400.I am now going up and down 10 pounds in a week.ugh.. I am disabled and pretty much bed ridden.I hurt all the time and fatigue is the biggest issue for me. Good luck with your retention.Are you getting the rashes also? Thanks SharonS In , Dory Doggie <hellodoggie0009@...> wrote: > > Sharon, > Are you on Gleevec 400 mgs.? What are your side effects? > Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a very difficult time with the water that happens to be the edema in my face, which swells, and causes severe > ear pain. > > Dory Doggie > > > > _________________________________________________________________ Insert movie times and more without leaving Hotmail®. http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_Q\ uickAdd_062009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Sharon, I think I need a break also.I forgot to mention my vision is suffering alot now.I actually had to get glasses.Never needed them before and I still have very blurred like vision and feel like I am squinting all the time.Very weird.I have always had great vision.It has been slowly getting worse since starting Gleevec and headaches also that I never had before.I needed my glasses yesterday while driving and it helped some but even with the glasses My vision is not good. My Dr is hesitant to take me off Gleevec as I have had pretty good results.At my last visit though I did discuss how my QOL is Crap.He said retest in two weeks,see me in a month and we will discuss it/changing meds.He also wanted me to get a brain scan to be safe.I have alot of health issues and take ALOT of pills so I am worried things will get worse..They may not but it is a fear. I worry about how the OTHER meds are taken? Meaning fasting or with meals etc.As I have had Gastric Bypass and Lapband surgery and I am diabetic.I need to eat very small meals about every 2 hours.So my schedule may be difficult.I also have so many supplements(vits and minerals) that also must be taken with food and some without food.So spacing pills is a battle already. Can you shed any light on how some of the other meds work in this sense? Thanks for all the advise/suggestions I really appreciate it. SharonS In , " Sharon Teichera " <onthewtr@...> wrote: > > Sharon S > > > > Some of those things all happened to me while on Gleevec. Especially the > stomach issues. It was awful-I lived on Imodium > > Then the rash came on for 6 months it would not go away. I was a walking > monster. I could not take it anymore and told my Dr. I wanted a better > quality of life and he put me on Sprycel. That was much much better for > three years then I got puffy, lost weight, plural effusion you name it I had > it. So they took me off that and I have been on Tasigna for over a year and > I am a new person. I know I should not say this because everyone reacts > differently to medication and I take no other medication and have no other > health issues, but QOF is very important to me. I am 66 years old and feel > 40. Honestly!!!!! But who knows how long this Tasigna high will last??? I > am also PCRU and have been. I promote Tasigna at this point, but when that > stops I have no idea where I will go. > > Talk to your Doctor-I think you need a break from Gleevec. > > > > Sharon T > > > > _____ > > From: [mailto: ] On Behalf Of > serenitywon > Sent: Wednesday, July 01, 2009 11:09 AM > > Subject: Re: [ ] New to Sprycel > > > > > > > > > Dory, > I started on Gleevec 400 mg in May 08.My Dr.didn't think I had good enough > response so he increased me to 600 mg after a few months.I reduced it back > down to 400 mg to help with my side effects. > I have edemma in my face and abdomin > I do get rashes occassionally > I do have red flushes all the time > I am at least two shades whiter than my previously ghostly color > My vision is really bad now.Got glasses and still very blurred vision > I get headaches now never did prior to gleevec > My hair is thin and falling out and texture has changed > > I have increased bone/joint/muscle pain > I have low body temp now(96.5,95.8) > My right arm is a different temp than my left(noticable temp) > > I have abdominal distress(bloat,gas,terrible smell,cramps)Diarhea and > constipation in same B/m Sorry TMI > > I have low right front swelling like prego on right side only and overall > swell from flat to 5 months prego look at other times. > > I have hot flashes occassionally,anxiety sometimes. > > I have alot of " other " health issues so who knows what's related to Gleevec > or not.I know I have alot of pain.I also have severe fatigue.I am Vit > D,A,K,Retinal,Iron Deficient.I am also Diabetic.I have alot of water > retention also.If I take my lasix I can lose 6 pounds in a day or two.I have > had some weight gain. > > I originally gained 10 pounds when I started Gleevec 400.I then stayed the > same when they increased my dose to 600.I lost 10 pounds when they decreased > me back down to 400.I am now going up and down 10 pounds in a week.ugh.. > > I am disabled and pretty much bed ridden.I hurt all the time and fatigue is > the biggest issue for me. > > Good luck with your retention.Are you getting the rashes also? > Thanks > SharonS > > In groups (DOT) <mailto:%40> com, Dory Doggie > <hellodoggie0009@> wrote: > > > > Sharon, > > Are you on Gleevec 400 mgs.? What are your side effects? > > Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a > very difficult time with the water that happens to be the edema in my face, > which swells, and causes severe > > ear pain. > > > > Dory Doggie > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 , Thanks for the input.I have been discussing this option with my Dr and he has been reluctant to change.I think I will now be a little more vocal about my qol needs.I have many other health issues so I am not sure if it is all Gleevec related but things have been worse since starting Gleevec.I am also Thank you SharonS In , Rosen Lum <rrosenlum@...> wrote: > > > > > Sharon, what do I know? Not much when it comes to the art and science of CML treatment from a medical standpoint. But as a layperson it seems to me you should not have to suffer such an abundance of side effects when there are alternate medications available. I was switched from Gleevec to Sprycel to sidestep the severe fatigue and pain you mention, and which I had with Gleevec. It's too soon to say how it's faring. Hair loss and some of the other stuff -- heck, we can live with that, right? But my main message is, I hate to hear that you are battling these difficulties if an alternative is available. > > With much compassion from Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 SharonS & SharonT, For the vision blurring problems, it helped me greatly to be on a supplement called: Lutein with 15mg. + Kale, it is the Carlson brand. You can go onto this web-site: www.carlsonlab.com. Or call: 888-234-5656. It stopped the eye bleeds I would have while on Gleevec 400mgs. It helps the eye, even though I do wear glasses. In the morning right after breakfast, I take most of the vitamin supplements, including the enzymes. At lunch time I take the Gleevec, with a full quart of water. 3 to 4 hours later I eat a light meal, then take the rest of my anti-oxidants. When the weather is tolerable and it is cool, I take 1 hour walks, through my local park. I find that if one utilizes a neti-pot, with the recommended sea salt saline, with zinc, for sinus and immune support, this will prevent the severe edema in the facial area. If you can't find a health food store which carry the neti-pot, you can go onto this web-site:HimilayanInsitute.org or call: 1800-822-4547. It is a less expensive and natural way, then to get more prescriptions to prevent the pain. The stomach problems with diarrhea, try probiotics and don't eat any dairy products, also avoid foods that have this ingredient Casein, it is a milk protein, which causes many people diarrhea, and can exacerbate when consumed and when your taking your Cml medications. I take 2 prior to sleeping, it will prevent perhaps the diarrhea, and when you take your drugs make sure you drink enough quality water, to work the drugs through. The rash use the probiotics which can stop some of the rash from the side-effects of Gleevec. You may not know however, with the dairy products in the market place you may also be gluten sensitive.Check the Celiac.com, this is a good place to see these symptoms, which one can also use food enzymes because most of the drugs target our liver, and food enzymes help one to digest foods from being malabsorbed, which then becomes a nutritional problem in our health. The only safest way for any of us Cmlers to continue with our medications and in coping with the variety of side-effects we have all experienced, is to find sources to enable us to continue the drugs even if they cause other side-effects. Ask Lottie, but she shipped me with an ointment which helps stop the rashes that occurs with Gleevec. I found that exterior heat, which is over 85 degrees and humidity, is my worst enemy. To deal with most of the side-effects I utilized massage therapy for 2 treatments of 30 minutes per session. My worst complain was how much my body hurt, as well as how much my top of my head hurt. Therapeutic massages helps to stimulate the blood better in our body parts, as well as drinking good quality water. I utilize even if health insurance won't pay Alternative Medicine, and Acupuncture. I pay out of pocket, and this has been the most effective way in benefiting, and coping with some of the unwanted side-effects of Gleevec, naturally, and without damaging or targeting another organ in our bodies! Hope you try some of my suggestions! Blessings to you both!! Dory Doggie ________________________________ From: serenitywon <serenitywon@...> Sent: Thursday, July 2, 2009 1:31:39 PM Subject: Re: [ ] New to Sprycel Sharon, I think I need a break also.I forgot to mention my vision is suffering alot now.I actually had to get glasses.Never needed them before and I still have very blurred like vision and feel like I am squinting all the time.Very weird.I have always had great vision.It has been slowly getting worse since starting Gleevec and headaches also that I never had before.I needed my glasses yesterday while driving and it helped some but even with the glasses My vision is not good. My Dr is hesitant to take me off Gleevec as I have had pretty good results.At my last visit though I did discuss how my QOL is Crap.He said retest in two weeks,see me in a month and we will discuss it/changing meds.He also wanted me to get a brain scan to be safe.I have alot of health issues and take ALOT of pills so I am worried things will get worse..They may not but it is a fear. I worry about how the OTHER meds are taken? Meaning fasting or with meals etc.As I have had Gastric Bypass and Lapband surgery and I am diabetic.I need to eat very small meals about every 2 hours.So my schedule may be difficult.I also have so many supplements( vits and minerals) that also must be taken with food and some without food.So spacing pills is a battle already. Can you shed any light on how some of the other meds work in this sense? Thanks for all the advise/suggestions I really appreciate it. SharonS In groups (DOT) com, " Sharon Teichera " <onthewtr@.. .> wrote: > > Sharon S > > > > Some of those things all happened to me while on Gleevec. Especially the > stomach issues. It was awful-I lived on Imodium > > Then the rash came on for 6 months it would not go away. I was a walking > monster. I could not take it anymore and told my Dr. I wanted a better > quality of life and he put me on Sprycel. That was much much better for > three years then I got puffy, lost weight, plural effusion you name it I had > it. So they took me off that and I have been on Tasigna for over a year and > I am a new person. I know I should not say this because everyone reacts > differently to medication and I take no other medication and have no other > health issues, but QOF is very important to me. I am 66 years old and feel > 40. Honestly!!!! ! But who knows how long this Tasigna high will last??? I > am also PCRU and have been. I promote Tasigna at this point, but when that > stops I have no idea where I will go. > > Talk to your Doctor-I think you need a break from Gleevec. > > > > Sharon T > > > > _____ > > From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of > serenitywon > Sent: Wednesday, July 01, 2009 11:09 AM > groups (DOT) com > Subject: Re: [ ] New to Sprycel > > > > > > > > > Dory, > I started on Gleevec 400 mg in May 08.My Dr.didn't think I had good enough > response so he increased me to 600 mg after a few months.I reduced it back > down to 400 mg to help with my side effects. > I have edemma in my face and abdomin > I do get rashes occassionally > I do have red flushes all the time > I am at least two shades whiter than my previously ghostly color > My vision is really bad now.Got glasses and still very blurred vision > I get headaches now never did prior to gleevec > My hair is thin and falling out and texture has changed > > I have increased bone/joint/muscle pain > I have low body temp now(96.5,95. 8) > My right arm is a different temp than my left(noticable temp) > > I have abdominal distress(bloat, gas,terrible smell,cramps) Diarhea and > constipation in same B/m Sorry TMI > > I have low right front swelling like prego on right side only and overall > swell from flat to 5 months prego look at other times. > > I have hot flashes occassionally, anxiety sometimes. > > I have alot of " other " health issues so who knows what's related to Gleevec > or not.I know I have alot of pain.I also have severe fatigue.I am Vit > D,A,K,Retinal, Iron Deficient.I am also Diabetic.I have alot of water > retention also.If I take my lasix I can lose 6 pounds in a day or two.I have > had some weight gain. > > I originally gained 10 pounds when I started Gleevec 400.I then stayed the > same when they increased my dose to 600.I lost 10 pounds when they decreased > me back down to 400.I am now going up and down 10 pounds in a week.ugh.. > > I am disabled and pretty much bed ridden.I hurt all the time and fatigue is > the biggest issue for me. > > Good luck with your retention.Are you getting the rashes also? > Thanks > SharonS > > In groups (DOT) <mailto:% 40groups. com> com, Dory Doggie > <hellodoggie0009@ > wrote: > > > > Sharon, > > Are you on Gleevec 400 mgs.? What are your side effects? > > Do you ever have the rash? I am on Gleevec 400 mgs., and I am having a > very difficult time with the water that happens to be the edema in my face, > which swells, and causes severe > > ear pain. > > > > Dory Doggie > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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