Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 I went off for three weeks. I had been experiencing cyclical and profound depression: from about 11 a.m. to about 6 p.m. every day. It was awful. My onc was very disturbed, but when I restarted Gleevec (now at a lower dose), the depression did not return. My labs did not change, still good. in San Francisco From: kathydf47@... Date: Wed, 13 May 2009 11:26:12 +0000 Subject: [ ] Gleevec 'holiday' Hi all, Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing so under the supervision or direction of your oncologist. I've been taking gleevec for 6 years and with a great & steady undetectable response. I'm wondering about holidays to manage side effects -- and give my old bod a rest now and again. Of course, one fear I have is that I'd feel sooooo good off that I wouldn't want to start again! Thanks for any info and/or thoughts. xoxo Kathy dx 5/03 _________________________________________________________________ Insert movie times and more without leaving Hotmail®. http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_Q\ uickAdd1_052009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Hi all, I've had 2 Glivec holidays since starting almost 5 years ago - the first was after just 6 weeks - due to low counts brought on by the Glivec/Ara-C combo & the second was last October due to severe diarrhea (food poisoning), the first time I was off Glivec for 5 weeks - I'm sure that my very low counts followed by this break allowed some sleeping cells to come into the cell cycle & that this explains my PCR-U status. The second break was just for 6 days - my Dr had told me to stay off for 10, but I didn't feel comfortable about that even though I'm pcr-u 6 I can't honestly say that I lost weight or felt better during the breaks. I hope that this helps, Barbara > > Hi all, > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing so under the supervision or direction of your oncologist. > > I've been taking gleevec for 6 years and with a great & steady undetectable response. > > I'm wondering about holidays to manage side effects -- and give my old bod a rest now and again. Of course, one fear I have is that I'd feel sooooo good off that I wouldn't want to start again! > > Thanks for any info and/or thoughts. > > xoxo > Kathy > dx 5/03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 I just saw Dr. Mauro last week. We discused taking holidays, but have decidedd to turn them down for now. They are trying to find out if some peolpe have something special in themselves that allows them do discontinue Gleevec and not relapse. He knows how much I want off the drug, as I am always anemic and exhausted. We have decide to wait it out a little longer so that Dr, Druker can try and find out what makes some of us tick better than others, so to speak. I will let everyone know what I find out over the next year from Dr. Mauro. On Wed, May 13, 2009 at 4:26 AM, kathydf47 <kathydf47@...> wrote: > > > Hi all, > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing > so under the supervision or direction of your oncologist. > > I've been taking gleevec for 6 years and with a great & steady undetectable > response. > > I'm wondering about holidays to manage side effects -- and give my old bod > a rest now and again. Of course, one fear I have is that I'd feel sooooo > good off that I wouldn't want to start again! > > Thanks for any info and/or thoughts. > > xoxo > Kathy > dx 5/03 > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2009 Report Share Posted May 15, 2009 I have been off Gleevec due to liver problems since Feb 18th. I never really felt any better . I saw the specialist Doctor Lipton here in Toronto yesterday and he put me back on 400 mg as before. I asked him why I didn't feel any better without it and he said by the time it was out of my system I would then most likely feel symptoms of my CML. Going to watch my #'s . Did blood work but I won't get the results until I see my regular oncologist on the 27th. Dr. Lipton says if my liver acts up again like before then I will have to switch to Sprycel. From: Barbara Meunier Sent: Wednesday, May 13, 2009 3:05 PM Subject: [ ] Re: Gleevec 'holiday' Hi all, I've had 2 Glivec holidays since starting almost 5 years ago - the first was after just 6 weeks - due to low counts brought on by the Glivec/Ara-C combo & the second was last October due to severe diarrhea (food poisoning), the first time I was off Glivec for 5 weeks - I'm sure that my very low counts followed by this break allowed some sleeping cells to come into the cell cycle & that this explains my PCR-U status. The second break was just for 6 days - my Dr had told me to stay off for 10, but I didn't feel comfortable about that even though I'm pcr-u 6 I can't honestly say that I lost weight or felt better during the breaks. I hope that this helps, Barbara > > Hi all, > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing so under the supervision or direction of your oncologist. > > I've been taking gleevec for 6 years and with a great & steady undetectable response. > > I'm wondering about holidays to manage side effects -- and give my old bod a rest now and again. Of course, one fear I have is that I'd feel sooooo good off that I wouldn't want to start again! > > Thanks for any info and/or thoughts. > > xoxo > Kathy > dx 5/03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 I always thought that anyone who took a gleevec holiday felt better while they were off it and I am interested that its not so, at least for some people. My son is getting married today and I had wished (in a small way) that he could take a G-break while on honeymoon... well, you have put my mind at rest. Thanks! It was rather funny when I suggested to that he ask his onc about this - both his and his lovely 's eyes popped wide open, like huge dinner plates and they spluttered that its ok - he feels great, has more energy and that they both would much rather not take that break!. You know, I don't think a mama's heart could have sung more beautifully in hearing this.... Not only that he is doing great, but that they are both very conscientious about him taking his gold.. ok - off to find some extra hankies to cry into today - with joy, of course. love and light to everyone Annie 's mom http://livingwithcml.blogspot.com > > > > Hi all, > > > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing so under the supervision or direction of your oncologist. > > > > I've been taking gleevec for 6 years and with a great & steady undetectable response. > > > > I'm wondering about holidays to manage side effects -- and give my old bod a rest now and again. Of course, one fear I have is that I'd feel sooooo good off that I wouldn't want to start again! > > > > Thanks for any info and/or thoughts. > > > > xoxo > > Kathy > > dx 5/03 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Congratulations on your son's wedding. I wish him all the happiness and love in his life I have two sons and saw them marry and they are very happy. Have a good day and enjoy every minute of it. Aloha Sharon _____ From: [mailto: ] On Behalf Of Annie Sent: Saturday, May 16, 2009 6:08 AM Subject: [ ] Re: Gleevec 'holiday' I always thought that anyone who took a gleevec holiday felt better while they were off it and I am interested that its not so, at least for some people. My son is getting married today and I had wished (in a small way) that he could take a G-break while on honeymoon... well, you have put my mind at rest. Thanks! It was rather funny when I suggested to that he ask his onc about this - both his and his lovely 's eyes popped wide open, like huge dinner plates and they spluttered that its ok - he feels great, has more energy and that they both would much rather not take that break!. You know, I don't think a mama's heart could have sung more beautifully in hearing this.... Not only that he is doing great, but that they are both very conscientious about him taking his gold.. ok - off to find some extra hankies to cry into today - with joy, of course. love and light to everyone Annie 's mom http://livingwithcm <http://livingwithcml.blogspot.com> l.blogspot.com > > > > Hi all, > > > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, doing so under the supervision or direction of your oncologist. > > > > I've been taking gleevec for 6 years and with a great & steady undetectable response. > > > > I'm wondering about holidays to manage side effects -- and give my old bod a rest now and again. Of course, one fear I have is that I'd feel sooooo good off that I wouldn't want to start again! > > > > Thanks for any info and/or thoughts. > > > > xoxo > > Kathy > > dx 5/03 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Hi Annie, how wonderful that your son is getting married today, you must be one proud Mama! What a great celebration, to overcome the dragon, to get on with his life, and to make his mother so proud, congratulations. Bobby On Sat, May 16, 2009 at 9:08 AM, Annie <ibannie@...> wrote: > > > I always thought that anyone who took a gleevec holiday felt better while > they were off it and I am interested that its not so, at least for some > people. My son is getting married today and I had wished (in a small way) > that he could take a G-break while on honeymoon... well, you have put my > mind at rest. Thanks! > > It was rather funny when I suggested to that he ask his onc about > this - both his and his lovely 's eyes popped wide open, like huge > dinner plates and they spluttered that its ok - he feels great, has more > energy and that they both would much rather not take that break!. You know, > I don't think a mama's heart could have sung more beautifully in hearing > this.... Not only that he is doing great, but that they are both very > conscientious about him taking his gold.. > > ok - off to find some extra hankies to cry into today - with joy, of > course. > > love and light to everyone > Annie > 's mom > http://livingwithcml.blogspot.com > > > > > > > > Hi all, > > > > > > Does anyone take a gleevec holiday? Or cycle on and off? Of course, > doing so under the supervision or direction of your oncologist. > > > > > > I've been taking gleevec for 6 years and with a great & steady > undetectable response. > > > > > > I'm wondering about holidays to manage side effects -- and give my old > bod a rest now and again. Of course, one fear I have is that I'd feel sooooo > good off that I wouldn't want to start again! > > > > > > Thanks for any info and/or thoughts. > > > > > > xoxo > > > Kathy > > > dx 5/03 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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