Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Hi Tammy, Don't give up, it will get better. I was dx at 38 and the first year was a bit of a slump but I kept doing the things I have to do (work) and the ones I like doing (sports, scuba,...) and in a few months I was back at my usual. I think most of the problem was to recover some fitness after loosing so much weight at the time of dx, and fitness doesn't come back in one day. If your blood counts are normal you should get back to normal, but your body has to adjust to you getting back to a normal life. Cheers, Marcos. On Sun, Jun 1, 2008 at 2:51 PM, Tammy Ferns <tammy@...> wrote: > Is this the new normal? It sucks!!! Since DX in Aug.... I was recovering > from surgery. Then I was into marital problems, then holidays. So, yeah, I > was tired - but there was a reason. Jan, Feb and March didn't bring much > activity. April and May and now that it is starting to warm up... I can't > " DO " things that require more than a few hours. I went to help at my > daughter's school on Fri. from 11 - 2. By 1:30 I was wondering when it > would > be over. I got home at 2:30 and slept until 6:00! Today we went and walked > around downtown from 1-3. And I came home and slept for 2 hours. Does this > mean I'm a wimp? Is this normal? Do I actually have to PLAN to be totally > exhausted after 2-3 hours of activities? Wouldn't this mean an amusement > park is out of the question? About a month ago, we did go to a science > museaum, where we watched a movie, walked around and then watched a > different movie. Then went to walk around a mall. I was tired, but not > totally exhausted, though I did sleep in the car on the way home. But the > past couple weeks - tired! > > Is there something else I should be doing? I see the onc in about 2 weeks, > I'll mention it to her. But it just doesn't seem like a 36 yo should be > this > tired. Or is this one of those side effects that just showed up and will > hopefully disappear again. > > Sorry I'm so negative. On the way home today when had to change plans so I > could lay down, I heard the frustrated " OK " sighs of the 13 and 8 yos. > Along > with my own frustration, theirs made it worse. > > Tammy > > > < > http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI > d=10140/stime=1212338651/nc1=5191945/nc2=5191951/nc3=4507179> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 I agree, Tammy. Earlier today I was remembering how I would just be fighting falling asleep in the middle of the day, like in the middle of a conversation. I still sometimes grab a catnap but nothing like that first year or so! From: montereyunderwater@... Date: Sun, 1 Jun 2008 15:15:32 -0700 Subject: Re: [ ] New fatigue question Hi Tammy, Don't give up, it will get better. I was dx at 38 and the first year was a bit of a slump but I kept doing the things I have to do (work) and the ones I like doing (sports, scuba,...) and in a few months I was back at my usual. I think most of the problem was to recover some fitness after loosing so much weight at the time of dx, and fitness doesn't come back in one day. If your blood counts are normal you should get back to normal, but your body has to adjust to you getting back to a normal life. Cheers, Marcos. On Sun, Jun 1, 2008 at 2:51 PM, Tammy Ferns <tammy@...> wrote: > Is this the new normal? It sucks!!! Since DX in Aug.... I was recovering > from surgery. Then I was into marital problems, then holidays. So, yeah, I > was tired - but there was a reason. Jan, Feb and March didn't bring much > activity. April and May and now that it is starting to warm up... I can't > " DO " things that require more than a few hours. I went to help at my > daughter's school on Fri. from 11 - 2. By 1:30 I was wondering when it > would > be over. I got home at 2:30 and slept until 6:00! Today we went and walked > around downtown from 1-3. And I came home and slept for 2 hours. Does this > mean I'm a wimp? Is this normal? Do I actually have to PLAN to be totally > exhausted after 2-3 hours of activities? Wouldn't this mean an amusement > park is out of the question? About a month ago, we did go to a science > museaum, where we watched a movie, walked around and then watched a > different movie. Then went to walk around a mall. I was tired, but not > totally exhausted, though I did sleep in the car on the way home. But the > past couple weeks - tired! > > Is there something else I should be doing? I see the onc in about 2 weeks, > I'll mention it to her. But it just doesn't seem like a 36 yo should be > this > tired. Or is this one of those side effects that just showed up and will > hopefully disappear again. > > Sorry I'm so negative. On the way home today when had to change plans so I > could lay down, I heard the frustrated " OK " sighs of the 13 and 8 yos. > Along > with my own frustration, theirs made it worse. > > Tammy > > > < > http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI > d=10140/stime=1212338651/nc1=5191945/nc2=5191951/nc3=4507179> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Hi Tammy, Let me offer you some hope. Fatigue was one of my side effects. Prior to Gleevec I functioned on 5-6 hours of sleep. Once on Gleevec I was tired and slept 10 hours a night. This went on for about 6 months and then it stopped as abruptly as it started. I am back to my 5-6 hours a night. Generally most side effects diminish over time. Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.5 log reduction Jan/08 3.6 log reduction Apr/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Tammy Ferns Sent: June 1, 2008 5:51 PM Subject: [ ] New fatigue question Is this the new normal? It sucks!!! Since DX in Aug.... I was recovering from surgery. Then I was into marital problems, then holidays. So, yeah, I was tired - but there was a reason. Jan, Feb and March didn't bring much activity. April and May and now that it is starting to warm up... I can't " DO " things that require more than a few hours. I went to help at my daughter's school on Fri. from 11 - 2. By 1:30 I was wondering when it would be over. I got home at 2:30 and slept until 6:00! Today we went and walked around downtown from 1-3. And I came home and slept for 2 hours. Does this mean I'm a wimp? Is this normal? Do I actually have to PLAN to be totally exhausted after 2-3 hours of activities? Wouldn't this mean an amusement park is out of the question? About a month ago, we did go to a science museaum, where we watched a movie, walked around and then watched a different movie. Then went to walk around a mall. I was tired, but not totally exhausted, though I did sleep in the car on the way home. But the past couple weeks - tired! Is there something else I should be doing? I see the onc in about 2 weeks, I'll mention it to her. But it just doesn't seem like a 36 yo should be this tired. Or is this one of those side effects that just showed up and will hopefully disappear again. Sorry I'm so negative. On the way home today when had to change plans so I could lay down, I heard the frustrated " OK " sighs of the 13 and 8 yos. Along with my own frustration, theirs made it worse. Tammy <http://geo.. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI > com/serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=10140/stime=1212338651/nc1=5191945/nc2=5191951/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 While on gleevec and sprycel I was tired a lot and did not fight it...i took a nap every afternoon that I could. But on Tasigna it is different. I am not tired until the end of the day because I have so much energy during the day. I hope it keeps up. My response has been wonderful. Sharon T Re: [ ] New fatigue question Hi Tammy, Don't give up, it will get better. I was dx at 38 and the first year was a bit of a slump but I kept doing the things I have to do (work) and the ones I like doing (sports, scuba,...) and in a few months I was back at my usual. I think most of the problem was to recover some fitness after loosing so much weight at the time of dx, and fitness doesn't come back in one day. If your blood counts are normal you should get back to normal, but your body has to adjust to you getting back to a normal life. Cheers, Marcos. On Sun, Jun 1, 2008 at 2:51 PM, Tammy Ferns <tammy@...> wrote: > Is this the new normal? It sucks!!! Since DX in Aug.... I was recovering > from surgery. Then I was into marital problems, then holidays. So, yeah, I > was tired - but there was a reason. Jan, Feb and March didn't bring much > activity. April and May and now that it is starting to warm up... I can't > " DO " things that require more than a few hours. I went to help at my > daughter's school on Fri. from 11 - 2. By 1:30 I was wondering when it > would > be over. I got home at 2:30 and slept until 6:00! Today we went and walked > around downtown from 1-3. And I came home and slept for 2 hours. Does this > mean I'm a wimp? Is this normal? Do I actually have to PLAN to be totally > exhausted after 2-3 hours of activities? Wouldn't this mean an amusement > park is out of the question? About a month ago, we did go to a science > museaum, where we watched a movie, walked around and then watched a > different movie. Then went to walk around a mall. I was tired, but not > totally exhausted, though I did sleep in the car on the way home. But the > past couple weeks - tired! > > Is there something else I should be doing? I see the onc in about 2 weeks, > I'll mention it to her. But it just doesn't seem like a 36 yo should be > this > tired. Or is this one of those side effects that just showed up and will > hopefully disappear again. > > Sorry I'm so negative. On the way home today when had to change plans so I > could lay down, I heard the frustrated " OK " sighs of the 13 and 8 yos. > Along > with my own frustration, theirs made it worse. > > Tammy > > > < > http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI > d=10140/stime=1212338651/nc1=5191945/nc2=5191951/nc3=4507179> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 (Diagnosed almost 2 years ago).The worst two side effects I have with gleevic now are fatigue and edema. After being at zero for the past 6 months, I was surprised that fatigue continues to plague me. Not all the time but every few weeks I have a period of several days or a couple weeks of overwhelming fatigue when I don't feel like getting dressed...(however I DO and try to keep my normal routine). It does seem to pass after awhile. Does anyone else continue to experience fatigue after getting to zero? The edema take management with lasiz, 20 mg or 40 mg every other day, then I struggle with getting enough potassium to avoid muscle spasms. But all in all I feel much better taking some of the fluid off so it's worth it. Margaret Margaret , mpraymond@... margaret-raymond@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Tammy, Amusement parks are not out of the question BUT you have to build into the cost for your day a rental of an ECV, it's one of those chairs that will allow you to drive around the park. They're usually about $40/day. I acutally bought one to have for myself and now whenever we are going on a trip or to a park I have my own to take with me. It allows you to exert your energy on things that matter and not on walking all around the park. If you don't have one you won't last long at a park. Good luck! :} J. [ ] New fatigue question Is this the new normal? It sucks!!! Since DX in Aug.... I was recovering from surgery. Then I was into marital problems, then holidays. So, yeah, I was tired - but there was a reason. Jan, Feb and March didn't bring much activity. April and May and now that it is starting to warm up... I can't " DO " things that require more than a few hours. I went to help at my daughter's school on Fri. from 11 - 2. By 1:30 I was wondering when it would be over. I got home at 2:30 and slept until 6:00! Today we went and walked around downtown from 1-3. And I came home and slept for 2 hours. Does this mean I'm a wimp? Is this normal? Do I actually have to PLAN to be totally exhausted after 2-3 hours of activities? Wouldn't this mean an amusement park is out of the question? About a month ago, we did go to a science museaum, where we watched a movie, walked around and then watched a different movie. Then went to walk around a mall. I was tired, but not totally exhausted, though I did sleep in the car on the way home. But the past couple weeks - tired! Is there something else I should be doing? I see the onc in about 2 weeks, I'll mention it to her. But it just doesn't seem like a 36 yo should be this tired. Or is this one of those side effects that just showed up and will hopefully disappear again. Sorry I'm so negative. On the way home today when had to change plans so I could lay down, I heard the frustrated " OK " sighs of the 13 and 8 yos. Along with my own frustration, theirs made it worse. Tammy <http://geo.. com/serv? s=97359714/ grpId=14762801/ grpspId=17050616 28/msgI d=10140/stime= 1212338651/ nc1=5191945/ nc2=5191951/ nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Hi, Margaret. Yes, I continue to have extreme fatigue 3 years after diagnosis. My PCR is sometimes zero, sometimes low positive. Warm regards. --- In , Margaret Peake <mpraymond@...> wrote: > > (Diagnosed almost 2 years ago).The worst two side effects I have with gleevic now are fatigue and edema. After being at zero for the past 6 months, I was surprised that fatigue continues to plague me. Not all the time but every few weeks I have a period of several days or a couple weeks of overwhelming fatigue when I don't feel like getting dressed...(however I DO and try to keep my normal routine). It does seem to pass after awhile. Does anyone else continue to experience fatigue after getting to zero? > > The edema take management with lasiz, 20 mg or 40 mg every other day, then I struggle with getting enough potassium to avoid muscle spasms. But all in all I feel much better taking some of the fluid off so it's worth it. > > Margaret > > > > > > > Margaret , > mpraymond@... > margaret-raymond@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
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