Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Hi Jen, Ahh... I remember very similar things. I have since gone back to the gleevac and experience virtually no SOB and have noticed I don't seem nearly as bloated. I think the swelling just isn't dependant but still there... I mean your GAINING WEIGHT without any explainable cause. One way to know.. diuretic or (I guess two ways) stop medicine. I got in the habit of just asking for what I thought was best. See how you do with large cup of coffee and maybe that would give you an idea... I hated Sprycel but my first FISH was 0. (Actually 0.4 but control is 0.5) I attribute that to the the Sprycel (eventhough I'm on Gleevac I was on Sprycel the majority of the time I've had CML which is 6 months) I hope you feel better. I know where you're coming from. I totally think it's fluid...how are your electrolytes? > > Hey everyone- > > I know we have talked about this before but I think its getting a bit out of > control and I need some help or guidance. For a refresher, I am on Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was switched > from Gleevec 800mg to Sprycel in last September I was weighing around 133-135. > I am now 154-156, depends on the day and it seems to be inching up quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help with > fatigue and Osteoporosis) and I have never been a " big " eater (don't like > sweets) but it seems the weight keeps coming!!!! > > I don't have " swelling " per say, but every once in a while my ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe more > internally? Maybe in the thighs, gut? I feel bloated in my belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't want it to > get to that point. I can't fit in my old sizes. I am experiencing exertional > SOB (have been since starting meds) as well as heavy sweats. > > Any ideas or thoughts?. > > > Hugs and Hope- > > 36 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Hi, Jen, I don't think this information will help you because you are on Sprycel but I will share anyway. I am on Gleevec 400mg since last July and this last month I started having edema in my feet. I feel it in my legs and throughout my body too. I have been given Lasix but I don't take it religiously because I teach and I don't have time to urinate all day long at work. I don't think it even works that good anyway. Maybe it is because I don't take it religiously. The times that I have taken it, it did nothing for my edema. I hope it eventually goes away. NYC > > > > Hey everyone- > > > > I know we have talked about this before but I think its getting a > bit out of > > control and I need some help or guidance. For a refresher, I am > on Spyrcel > > 100mg daily that I take at bedtime. My weight.......When I was > switched > > from Gleevec 800mg to Sprycel in last September I was weighing > around 133-135. > > I am now 154-156, depends on the day and it seems to be inching up > quickly. > > I have ALWAYS been a skinny person > > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to > help with > > fatigue and Osteoporosis) and I have never been a " big " eater > (don't like > > sweets) but it seems the weight keeps coming!!!! > > > > I don't have " swelling " per say, but every once in a while my > ankles look " a > > little " puffy, not bad though. Has anyone experienced edema, maybe > more > > internally? Maybe in the thighs, gut? I feel bloated in my > belly.....Wondering > > if a diuretic would help or if its even needed? Has anyone had > this trouble > > with edema though not so evident? What's the best natural > diuretic? > > > > I don't look like the Pillsbury dough boy yet but I really don't > want it to > > get to that point. I can't fit in my old sizes. I am experiencing > exertional > > SOB (have been since starting meds) as well as heavy sweats. > > > > Any ideas or thoughts?. > > > > > > Hugs and Hope- > > > > 36 > > CML 5/13/05 > > Gleevec 800mg until 8/07 > > Spyrcel 100 mg since 9/07 > > Wife and mother of 3 (12,9,7) > > # 907 in Zavie's Zero Club > > > > > > > > > > > > **************Wondering what's for Dinner Tonight? Get new twists > on family > > favorites at AOL Food. > > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Hi , I've gotten so used to the SOB that I don't even think about it anymore. It's funny because I can walk 3 miles (at a very fast pace) and have no problems breathing but I can't drain a pot of pasta without huffing and puffing. I've never tried diuretics (in pill form) because I find that I can get the same effect with various foods. I think the most effective diuretic I've found is drinking a water bottle with Crystal Light flavouring. I don't know if you know what I'm talking about or if it's available where you are. It's a small packet of flavouring that you put in the water bottle and shake it up. The artificial sweetener in the Crystal Light irritates the bladder and makes you pee like a race horse. Other things that can work are cucumbers, grapes and watermelon. Also caffeine can work but I've found that it only works if my body isn't used to it so if I start to drink a cup of coffee every day, after about a week, the diuretic effect won't work anymore. Take care and good luck, Tracey > > Hey everyone- > > I know we have talked about this before but I think its getting a bit out of > control and I need some help or guidance. For a refresher, I am on Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was switched > from Gleevec 800mg to Sprycel in last September I was weighing around 133-135. > I am now 154-156, depends on the day and it seems to be inching up quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help with > fatigue and Osteoporosis) and I have never been a " big " eater (don't like > sweets) but it seems the weight keeps coming!!!! > > I don't have " swelling " per say, but every once in a while my ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe more > internally? Maybe in the thighs, gut? I feel bloated in my belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't want it to > get to that point. I can't fit in my old sizes. I am experiencing exertional > SOB (have been since starting meds) as well as heavy sweats. > > Any ideas or thoughts?. > > > Hugs and Hope- > > 36 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 You guys, what is SOB? @...: traceyincanada@...: Thu, 15 May 2008 00:32:16 +0000Subject: [ ] Re: Weight......Fluid? Hi ,I've gotten so used to the SOB that I don't even think about it anymore. It's funny because I can walk 3 miles (at a very fast pace) and have no problems breathing but I can't drain a pot of pasta without huffing and puffing. I've never tried diuretics (in pill form) because I find that I can get the same effect with various foods. I think the most effective diuretic I've found is drinking a water bottle with Crystal Light flavouring. I don't know if you know what I'm talking about or if it's available where you are. It's a small packet of flavouring that you put in the water bottle and shake it up. The artificial sweetener in the Crystal Light irritates the bladder and makes you pee like a race horse.Other things that can work are cucumbers, grapes and watermelon. Also caffeine can work but I've found that it only works if my body isn't used to it so if I start to drink a cup of coffee every day, after about a week, the diuretic effect won't work anymore.Take care and good luck,Tracey>> Hey everyone-> > I know we have talked about this before but I think its getting a bit out of > control and I need some help or guidance. For a refresher, I am on Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was switched > from Gleevec 800mg to Sprycel in last September I was weighing around 133-135. > I am now 154-156, depends on the day and it seems to be inching up quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help with > fatigue and Osteoporosis) and I have never been a " big " eater (don't like > sweets) but it seems the weight keeps coming!!!!> > I don't have " swelling " per say, but every once in a while my ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe more > internally? Maybe in the thighs, gut? I feel bloated in my belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't want it to > get to that point. I can't fit in my old sizes. I am experiencing exertional > SOB (have been since starting meds) as well as heavy sweats.> > Any ideas or thoughts?.> > > Hugs and Hope-> > 36> CML 5/13/05> Gleevec 800mg until 8/07> Spyrcel 100 mg since 9/07> Wife and mother of 3 (12,9,7)> # 907 in Zavie's Zero Club> > > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)> > > [Non-text portions of this message have been removed]> _________________________________________________________________ Windows Live SkyDrive lets you share files with faraway friends. http://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_skyd\ rive_052008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 yeah -- I am wondering the same thing. chris in Minn [ ] Re: Weight......Fluid? Hi ,I've gotten so used to the SOB that I don't even think about it anymore. It's funny because I can walk 3 miles (at a very fast pace) and have no problems breathing but I can't drain a pot of pasta without huffing and puffing. I've never tried diuretics (in pill form) because I find that I can get the same effect with various foods. I think the most effective diuretic I've found is drinking a water bottle with Crystal Light flavouring. I don't know if you know what I'm talking about or if it's available where you are. It's a small packet of flavouring that you put in the water bottle and shake it up. The artificial sweetener in the Crystal Light irritates the bladder and makes you pee like a race horse.Other things that can work are cucumbers, grapes and watermelon. Also caffeine can work but I've found that it only works if my body isn't used to it so if I start to drink a cup of coffee every day, after about a week, the diuretic effect won't work anymore.Take care and good luck,Tracey>> Hey everyone-> > I know we have talked about this before but I think its getting a bit out of > control and I need some help or guidance. For a refresher, I am on Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was switched > from Gleevec 800mg to Sprycel in last September I was weighing around 133-135. > I am now 154-156, depends on the day and it seems to be inching up quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help with > fatigue and Osteoporosis) and I have never been a " big " eater (don't like > sweets) but it seems the weight keeps coming!!!!> > I don't have " swelling " per say, but every once in a while my ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe more > internally? Maybe in the thighs, gut? I feel bloated in my belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't want it to > get to that point. I can't fit in my old sizes. I am experiencing exertional > SOB (have been since starting meds) as well as heavy sweats.> > Any ideas or thoughts?.> > > Hugs and Hope-> > 36> CML 5/13/05> Gleevec 800mg until 8/07> Spyrcel 100 mg since 9/07> Wife and mother of 3 (12,9,7)> # 907 in Zavie's Zero Club> > > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001<http://food.aol.co\ m/dinner-tonight?NCID=aolfod00030000000001>)> > > [Non-text portions of this message have been removed]> __________________________________________________________ Windows Live SkyDrive lets you share files with faraway friends. http://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_skyd\ rive_052008<http://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_\ Refresh_skydrive_052008> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 SOB is shortness of breath, common with Sprycel, and can also be a sign of pleural effusion, which you really don't want. When I got SOB I had to keep getting chest Xrays, my dr. finally took me off sprycel and I was only on 70 at first, then dropped to 40, then had to stop it altogether. Too bad , I had reached CCR in 10 months and loved it. But keep an eye on that SOB and water retention, can get serious. Bobby Rosen Lum <rrosenlum@...> wrote: You guys, what is SOB? @...: traceyincanada@...: Thu, 15 May 2008 00:32:16 +0000Subject: [ ] Re: Weight......Fluid? Hi ,I've gotten so used to the SOB that I don't even think about it anymore. It's funny because I can walk 3 miles (at a very fast pace) and have no problems breathing but I can't drain a pot of pasta without huffing and puffing. I've never tried diuretics (in pill form) because I find that I can get the same effect with various foods. I think the most effective diuretic I've found is drinking a water bottle with Crystal Light flavouring. I don't know if you know what I'm talking about or if it's available where you are. It's a small packet of flavouring that you put in the water bottle and shake it up. The artificial sweetener in the Crystal Light irritates the bladder and makes you pee like a race horse.Other things that can work are cucumbers, grapes and watermelon. Also caffeine can work but I've found that it only works if my body isn't used to it so if I start to drink a cup of coffee every day, after about a week, the diuretic effect won't work anymore.Take care and good luck,Tracey>> Hey everyone-> > I know we have talked about this before but I think its getting a bit out of > control and I need some help or guidance. For a refresher, I am on Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was switched > from Gleevec 800mg to Sprycel in last September I was weighing around 133-135. > I am now 154-156, depends on the day and it seems to be inching up quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help with > fatigue and Osteoporosis) and I have never been a " big " eater (don't like > sweets) but it seems the weight keeps coming!!!!> > I don't have " swelling " per say, but every once in a while my ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe more > internally? Maybe in the thighs, ! gut? I f eel bloated in my belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't want it to > get to that point. I can't fit in my old sizes. I am experiencing exertional > SOB (have been since starting meds) as well as heavy sweats.> > Any ideas or thoughts?.> > > Hugs and Hope-> > 36> CML 5/13/05> Gleevec 800mg until 8/07> Spyrcel 100 mg since 9/07> Wife and mother of 3 (12,9,7)> # 907 in Zavie's Zero Club> > > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)> > > [Non-text portions of this message have been removed]> __________________________________________________________ Windows Live SkyDrive lets you share files with faraway friends. http://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_skyd\ rive_052008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 I like to call it being fluffy- eyes, belly, legs and when I returned from Nashville my feet were swollen. It is confusing- I walk/ ran 13.1 miles in Nashville last month but if I walk up the stairs to my office I'm breathing heavy. Oh well- I'm off to buy some crystal light, grapes, watermelon and cucumbers.smile. Chi --- Tracey <traceyincanada@...> wrote: > Hi , > > I've gotten so used to the SOB that I don't even > think about it > anymore. It's funny because I can walk 3 miles (at > a very fast pace) > and have no problems breathing but I can't drain a > pot of pasta > without huffing and puffing. > > I've never tried diuretics (in pill form) because I > find that I can > get the same effect with various foods. I think the > most effective > diuretic I've found is drinking a water bottle with > Crystal Light > flavouring. I don't know if you know what I'm > talking about or if > it's available where you are. It's a small packet > of flavouring that > you put in the water bottle and shake it up. The > artificial > sweetener in the Crystal Light irritates the bladder > and makes you > pee like a race horse. > > Other things that can work are cucumbers, grapes and > watermelon. > Also caffeine can work but I've found that it only > works if my body > isn't used to it so if I start to drink a cup of > coffee every day, > after about a week, the diuretic effect won't work > anymore. > > Take care and good luck, > Tracey > > > > > > > > > Hey everyone- > > > > I know we have talked about this before but I > think its getting a > bit out of > > control and I need some help or guidance. For a > refresher, I am > on Spyrcel > > 100mg daily that I take at bedtime. My > weight.......When I was > switched > > from Gleevec 800mg to Sprycel in last September I > was weighing > around 133-135. > > I am now 154-156, depends on the day and it seems > to be inching up > quickly. > > I have ALWAYS been a skinny person > > (5 foot 7 1/2) and now I am stumped. I am > exercising daily (to > help with > > fatigue and Osteoporosis) and I have never been a > " big " eater > (don't like > > sweets) but it seems the weight keeps coming!!!! > > > > I don't have " swelling " per say, but every once in > a while my > ankles look " a > > little " puffy, not bad though. Has anyone > experienced edema, maybe > more > > internally? Maybe in the thighs, gut? I feel > bloated in my > belly.....Wondering > > if a diuretic would help or if its even needed? > Has anyone had > this trouble > > with edema though not so evident? What's the best > natural > diuretic? > > > > I don't look like the Pillsbury dough boy yet but > I really don't > want it to > > get to that point. I can't fit in my old sizes. I > am experiencing > exertional > > SOB (have been since starting meds) as well as > heavy sweats. > > > > Any ideas or thoughts?. > > > > > > Hugs and Hope- > > > > 36 > > CML 5/13/05 > > Gleevec 800mg until 8/07 > > Spyrcel 100 mg since 9/07 > > Wife and mother of 3 (12,9,7) > > # 907 in Zavie's Zero Club > > > > > > > > > > > > **************Wondering what's for Dinner Tonight? > Get new twists > on family > > favorites at AOL Food. > > > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Hi Jen When I was on sprycel I put on a good few kgs, again no obvious swellings, it seemed to settle round my middle, sort of under the boobs and above the waist. At times it was difficult to bend etc. I also had SOB without any obvious fluid on the lungs. I got to the stage where I was really unwell with it all and my oxygen levels in the blood fell. I was also getting very very hot without any obvious temperature. I had other odd/unusual symptoms. I definitely felt that the drug was 'poisoning' me........ Anyway at that stage I was only on 50mg once daily and I stopped the drug and am now 6+ months post TX. Thinking of you Leigh email: susan@... www.caringbridge.org/visit/susanleigh skype ID: susan-leigh On 15 May 2008, at 00:47, vegasrnjen@... wrote: > Hey everyone- > > I know we have talked about this before but I think its getting a > bit out of > control and I need some help or guidance. For a refresher, I am on > Spyrcel > 100mg daily that I take at bedtime. My weight.......When I was > switched > from Gleevec 800mg to Sprycel in last September I was weighing > around 133-135. > I am now 154-156, depends on the day and it seems to be inching up > quickly. > I have ALWAYS been a skinny person > (5 foot 7 1/2) and now I am stumped. I am exercising daily (to help > with > fatigue and Osteoporosis) and I have never been a " big " eater > (don't like > sweets) but it seems the weight keeps coming!!!! > > I don't have " swelling " per say, but every once in a while my > ankles look " a > little " puffy, not bad though. Has anyone experienced edema, maybe > more > internally? Maybe in the thighs, gut? I feel bloated in my > belly.....Wondering > if a diuretic would help or if its even needed? Has anyone had this > trouble > with edema though not so evident? What's the best natural diuretic? > > I don't look like the Pillsbury dough boy yet but I really don't > want it to > get to that point. I can't fit in my old sizes. I am experiencing > exertional > SOB (have been since starting meds) as well as heavy sweats. > > Any ideas or thoughts?. > > > Hugs and Hope- > > 36 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > **************Wondering what's for Dinner Tonight? Get new twists > on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > Quote Link to comment Share on other sites More sharing options...
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