Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hey CML Buddies- I was wondering if those of you whom have suffered with pleural effusions could maybe give us some of your side effects that you had when you where diagnosed with that. What did you feel? What did you experience? How did if affect your appetite, sleep, energy level, etc. I think it would benefit all of us whom haven't had those problem to maybe be alerted to the effects of it so we can stay on top of it should we start to develop it. I know I for one, while on Gleevec was walking around with pneumonia and all I really noticed was a little bit more shortness of breath then usual. I guess sometimes its hard to realize its something more when you suffer with SOB and fatigue on a daily basis. Thanks in advance for your inputs. Hopefully it will offer support to others on the list. Also- Aliza- I think you would benefit from Sprycel. My 2 cents worth! Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hello All, Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. Hope this helps someone. L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 > > Hello All, > > Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. > > He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. > > These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. > > Hope this helps someone. > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Aliza, perhaps sometimes it is difficult for the drs. to dx pleural effusion. When I went to emergency, they said I had pneumonia. The next X-Ray the dr. said was fine, and it was not, I had the results sent to Dr. Talpaz and he said it was plerual effusion. That happened twice, my dr. said it was ok, then Dr. Talpaz took me off Sprycel because he said it was not fine. I don't know what would make it so difficult to read an X-Ray, but that is what happened. What I would like is some advice on how to handle 30 mg Prednisone a day. It gives me an up-tight feeling, like coffee nerves. Eating helps, but the feeling last for hours, and I never want things like celery and carrots, I want peanut butter and jelly, and my weight keeps going up and up. It's always something, but aside from the " coffee nerves " , I feel fine, havae a great day everyone, Bobby alizayaffagutierrez <taina2044@...> wrote: > > Hello All, > > Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. > > He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. > > These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. > > Hope this helps someone. > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi , what I noticed, was sob, first, and then a pain in my chest, the right side. I could not lie down at all, and slept in my recliner. When it got real bad, I thought I was having a heart attack, and called 911. I was told it was not a heart attack, and that was good news, but did go to the hospital and got mis-diagnosed with pneumonia. They gave me so many breathing exercises with prednisone I thought I would jump out of my skin. It was a couple of weeks like that, and not until I had a thoracentesis that it got better, that was not until March. That is when I told Dr. Talpaz about it. My advice would be to be sure it's PE real soon, and not have to have that procedure done. Everyone tells me that is a simple painless procedure, well maybe so, and maybe the dr. who did it didn't know how to do it real well? The pain was so great I had them stop, therefore they did not get all the fluid out, that may explain why it took so long to clear up the problem. What started in Dec, of 06, did not get cleared up until June, 06, and returned this past Ded......now I am still on Prednizone for it, but it's much better. I think I am most likely going to be put on Tasigna, depending on my bma in two weeks. Being on Sprycel and off, and on again, has put me out of CCR, so I'm hoping for good results. Bobby vegasrnjen@... wrote: Hey CML Buddies- I was wondering if those of you whom have suffered with pleural effusions could maybe give us some of your side effects that you had when you where diagnosed with that. What did you feel? What did you experience? How did if affect your appetite, sleep, energy level, etc. I think it would benefit all of us whom haven't had those problem to maybe be alerted to the effects of it so we can stay on top of it should we start to develop it. I know I for one, while on Gleevec was walking around with pneumonia and all I really noticed was a little bit more shortness of breath then usual. I guess sometimes its hard to realize its something more when you suffer with SOB and fatigue on a daily basis. Thanks in advance for your inputs. Hopefully it will offer support to others on the list. Also- Aliza- I think you would benefit from Sprycel. My 2 cents worth! Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 > Hey CML Buddies- > > I was wondering if those of you whom have suffered with pleural effusions > could maybe give us some of your side effects that you had when you where > diagnosed with that. What did you feel? What did you experience? How did if > affect your appetite, sleep, energy level, etc. I think it would benefit all of > us whom haven't had those problem to maybe be alerted to the effects of it > so we can stay on top of it should we start to develop it. > > I know I for one, while on Gleevec was walking around with pneumonia and all > I really noticed was a little bit more shortness of breath then usual. I > guess sometimes its hard to realize its something more when you suffer with SOB > and fatigue on a daily basis. > > Thanks in advance for your inputs. Hopefully it will offer support to > others on the list. > > Also- Aliza- I think you would benefit from Sprycel. My 2 cents worth! > > Hugs and Hope- > > 35 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 32 lbs of water?! Amazing. With warm regards, Matt [ ] Pleural Effusion Tips Hello All, Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. Hope this helps someone. L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi , Boy, can I tell you about pleural effuisions. Mine though was a complication from my heart surgery, not CML. I still remember it vividly. I awoke one morning with a very dull ache in my back. I called my heart surgeon and booked it up to Spokane to see him. He could find nothing wrong with my heart surgically, so sent me home. My sister had taken me to Spokane, since I wasn't allowed to drive yet. On the way home she decided to stop at a Taco Bell for lunch. Big mistake for me.. eating. I started feeling sick on the way home (an hour and a half ride). After she dropped me off I did the one thing I hate most in this world.. vomited. YUCK! As the evening wore on I got more and more sick. Why I didn't call the ambulance is beyond me, but I waited for my husband to get home from work at 11:30 p.m. By this time I couldn't bend at all.. sitting was impossible as was laying down. As soon as he got home, he loaded me in the pickup and took me to our local ER. The ER docs called in the surgeon, who was sure I was having an appendicitis attack and wanted to do surgery. My PCP came in about 5:30 a.m. The nurse had laid me flat in the bed! A big no no for people with PE. I remember he and the surgeon arguing over me about the surgery. Thank heavens my PCP won out and they shipped me to Spokane via ambulance. That ride seemed to take forever. My cardio was waiting for me at the hospital. He ordered xrays and they found that the entire right lung had collapsed from the amount of fluid in the sac. They drained over 1 liter of fluid off my lung. At the time that this happened SOB was a way of life for me. My case was severe and I was on Lasix at the time. Another thing about Lasix.. if you take it, it is a loop diruetic, which means that it is potassium depleting. Potassium should always be taken with Lasix. I take 20 meq of potassium for every 20 mgs. of Lasix. Bananas, while helpful, are not enough to keep up with the amount of potassium loss from Lasix. My cardio told me that I could eat a whole grove of bananas and it wouldn't help me LOL. Another little tip for those of you who have a hard time taking pills. Applesauce. Plop the pill on a spoonful and applesauce and down it goes. I had a hard time taking my pills since I was intubated for my heart surgery. It worked great!! Hope this helps someone. Take care, Zazzy Re: [ ] Re: Pleural Effusion Tips Hey CML Buddies- I was wondering if those of you whom have suffered with pleural effusions could maybe give us some of your side effects that you had when you where diagnosed with that. What did you feel? What did you experience? How did if affect your appetite, sleep, energy level, etc. I think it would benefit all of us whom haven't had those problem to maybe be alerted to the effects of it so we can stay on top of it should we start to develop it. I know I for one, while on Gleevec was walking around with pneumonia and all I really noticed was a little bit more shortness of breath then usual. I guess sometimes its hard to realize its something more when you suffer with SOB and fatigue on a daily basis. Thanks in advance for your inputs. Hopefully it will offer support to others on the list. Also- Aliza- I think you would benefit from Sprycel. My 2 cents worth! Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 I know. 32 pounds of water then after that he worked to lose 35 pounds of body weight. Also amazing. His onc told him that he had actually been in critical condition when he FINALLY called for help. Cheers, L [ ] Pleural Effusion Tips Hello All, Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. Hope this helps someone. L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi Aliza, I know you're extremely frustrated and possibly scared since you don't have a doc who's up to date on cml. I notice that you live in Rochester. Could there be someone associated with the university who you could see? Have you checked around to see if there is someone else who is at least educated about cml and up to date with treatments even though they might not actually specialize in this particular disease? Never, ever give up! (That's the slogan on another website, btw) L [ ] Re: Pleural Effusion Tips > > Hello All, > > Today I had a long conversation with a friend who has recovered from the worst incidence of pleural effusion I have ever heard. When he finally quit taking sprycel (for 5 weeks) he lost 32 pounds of water. > > He told me that of all the things he trie that there are three that have worked the best to get rid of the water and keep it from returning. He said they are to eat a salt-free diet; lose weight if you are overweight and to exercise. He's lost 35 pounds in addition to the water weight. His effusion was so bad that he could hardly move so exercise may not be an option until the water is gone. But, it can helpt o keep it from coming back. I agree though my pleural effusion episode was nothing compared to his. > > These are just suggestions, of course, since I am not a doctor but they have worked for me as well except for the weight loss which I do not need. > > Hope this helps someone. > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 - -- In , " zazzy did u have open heart after dx for cml? aliza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi Aliza, No, the open heart surgery was first. Since then I've had a lot of surgeries though... mastectomy, appendectomy, back surgery, elbow surgery. I've come through all with flying colors, just had to stop taking Gleevec for a week or so. Take care, Zazz --- In , " alizayaffagutierrez " <taina2044@...> wrote: > > - > > -- In , " > > > zazzy did u have open heart after dx for cml? > aliza > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 My symptoms were-I woke one morning with swollen eyes-I mean really swollen.went to the dr and he could not hear anything in my chest. Went for a chest x-ray and that is when they found it. They drew a qt of liquid from my lungs No other symptoms. Sharon _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Friday, March 07, 2008 2:17 PM Subject: Re: [ ] Re: Pleural Effusion Tips Hi , what I noticed, was sob, first, and then a pain in my chest, the right side. I could not lie down at all, and slept in my recliner. When it got real bad, I thought I was having a heart attack, and called 911. I was told it was not a heart attack, and that was good news, but did go to the hospital and got mis-diagnosed with pneumonia. They gave me so many breathing exercises with prednisone I thought I would jump out of my skin. It was a couple of weeks like that, and not until I had a thoracentesis that it got better, that was not until March. That is when I told Dr. Talpaz about it. My advice would be to be sure it's PE real soon, and not have to have that procedure done. Everyone tells me that is a simple painless procedure, well maybe so, and maybe the dr. who did it didn't know how to do it real well? The pain was so great I had them stop, therefore they did not get all the fluid out, that may explain why it took so long to clear up the problem. What started in Dec, of 06, did not get cleared up until June, 06, and returned this past Ded......now I am still on Prednizone for it, but it's much better. I think I am most likely going to be put on Tasigna, depending on my bma in two weeks. Being on Sprycel and off, and on again, has put me out of CCR, so I'm hoping for good results. Bobby vegasrnjenaol (DOT) <mailto:vegasrnjen%40aol.com> com wrote: Hey CML Buddies- I was wondering if those of you whom have suffered with pleural effusions could maybe give us some of your side effects that you had when you where diagnosed with that. What did you feel? What did you experience? How did if affect your appetite, sleep, energy level, etc. I think it would benefit all of us whom haven't had those problem to maybe be alerted to the effects of it so we can stay on top of it should we start to develop it. I know I for one, while on Gleevec was walking around with pneumonia and all I really noticed was a little bit more shortness of breath then usual. I guess sometimes its hard to realize its something more when you suffer with SOB and fatigue on a daily basis. Thanks in advance for your inputs. Hopefully it will offer support to others on the list. Also- Aliza- I think you would benefit from Sprycel. My 2 cents worth! Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money. <http://money.aol.com/tax?NCID=aolprf00030000000001> aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 > > > > - > > > > -- In , " > > > > > > zazzy did u have open heart after dx for cml? > > aliza > > > Quote Link to comment Share on other sites More sharing options...
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