Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Does your Oncologist have any first hand experience with switching? He is pretty savvy and is a hematologist, he has and has had several CML patients. I think he bringing this switch up to me, makes me feel he does have my interest at heart. I just want to be sure I know all I can for that appt in a few weeks. **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 , those symptoms sounds so familiar, I have pain behind my left eye brow right now. Just so weird, and I am over it! But, I always say, this issues are such a small price to pay. We need to have a Aussie chat one day. I have not been in a few years, but have so many friends in AU. cheers, chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Zavie, we have not gotten to a dosage at this time. We are just in the talking phase, but he seems very sure he wants to do this. We will have an appt when the BCR comes back. Ok, off to the blood drawl. chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Chris- I switched from Gleevec 800mg to Sprycel 100mg last Deptember due to intolerance to Gleevec. I responded well but the side effects left me with no quality of life. I still have the fatigue and pain but its to a much lessor degree. I have gain weight with Spyrcel but I did as well with Gleevec. I was off Gleevec for about 3 weeks (lost around 17 pounds) and have since put all that back on. I think its retention. I think you'll be happy with Sprycel. I have also not only tolerated it better but I am responding well too. I am PCRU right now. Don't get me wrong, I still have rough days mostly with the fatigue but I do have quality again and that it what I needed. 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 **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Chris A " wash-out " period is a good idea when switching to any drug. It takes about 5 days for Gleevec to be removed from the body. This is the amount of time that should occur before starting the new drug A period of adjustment when switching to a new drug does seem to occur. Does your Oncologist have any first hand experience with switching? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Its very important to talk with your onc about the side effects when switching. I had a pretty bad reaction but didn't have any time in between e.g. " washing out " gleevec of my system. Others have made the switch pretty easily. I eventually went back on gleevec and to my surprise, had many fewer systems. We don't know why that happened. Hope it goes well. Mararet letitbe@... wrote: Hello to everyone, So looks like my Onc is most likely swapping my from Gleevec to Sprycell. The plan here is to get me some relief as I still am having pretty bad head pain and muscle fatigue. The Dr said after 15 months, we can genuinely call this intolerance as it is not getting better and there are some definite quality of life issues. This plan is not in concrete. I am going in this morning for a PCR-ABL. Then he and I will get together when that comes back. Just so I have my ducks in a row and seem like I know what I am talking about =) Is there a sort of clean out Gleevec period, where I have no meds prior to going on Sprycell or do I wake up one morning when the Gleevec is empty and start right in on Sprycell? I am all to familiar with the Gleevec side effects, what do I have to look forward to with Sprycell? Another concern, I am a sales rep, I am also the next few months in my prime selling season. Would it be better to insist on waiting to start Sprycell till after my prime season ends or is it safe to dive in, head first? I just do not want to find myself with 4-6 weeks left to go in my season and be sick as a dog, not able to work because I swapped into a new med. While I am uncomfortable a good bit on Gleevec, I am functioning pretty darn well. Thanks in advance for any thoughts. I remember several others switching meds, like . I remember posting progress and that there were bumps in the road. I guess this has got me pretty freaked out. Did not sleep at all last night. I would dose off, but wake up thinking about this and am nervous about my insurance going along, as the last I researched, Sprycell was a good bit more money. Thanks Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 G'day - I know what you mean about the headaches! I am trialling 200mg Glivec at present due to my terrific response to Glivec. I don't know what your PCR levels are, mine have gone from 13.01% at my first 3 month test, to 0.08% at my 6 month test. When I had a consult with Prof over here, he believes the 400mg dose was toxic to me, so I had a 4 week break when I felt fabulous to 7 days so far of 200mg. For 6 days no probs then had some slight oedema in my eyelids and some burning pain across the top of my right eye into the eyebrow and down beside my cheek bone. No fatigue so far - just great! That lasted 2 days and OK again - so hopefully I can continue my downward PCR trend, all be it a bit slower. With my 4 week break, it took me 3 weeks to shake off the fluid retention, headaches and fatigue. In a weeks time I will have a serum blood level done to determine what the level is and whether I have the 1000ng per ml required level. Have you had a serum level done to check if your levels are too high? Prof said he is finding that people are metabolizing it differently and perhaps this may be why some of us are experiencing severe symptoms. Food for thought! Regards, Downunder _____ From: [mailto: ] On Behalf Of letitbe@... Sent: Thursday, 22 May 2008 8:58 PM Subject: [ ] switching from Gleevec to Sprycell? Hello to everyone, So looks like my Onc is most likely swapping my from Gleevec to Sprycell. The plan here is to get me some relief as I still am having pretty bad head pain and muscle fatigue. The Dr said after 15 months, we can genuinely call this intolerance as it is not getting better and there are some definite quality of life issues. This plan is not in concrete. I am going in this morning for a PCR-ABL. Then he and I will get together when that comes back. Just so I have my ducks in a row and seem like I know what I am talking about =) Is there a sort of clean out Gleevec period, where I have no meds prior to going on Sprycell or do I wake up one morning when the Gleevec is empty and start right in on Sprycell? I am all to familiar with the Gleevec side effects, what do I have to look forward to with Sprycell? Another concern, I am a sales rep, I am also the next few months in my prime selling season. Would it be better to insist on waiting to start Sprycell till after my prime season ends or is it safe to dive in, head first? I just do not want to find myself with 4-6 weeks left to go in my season and be sick as a dog, not able to work because I swapped into a new med. While I am uncomfortable a good bit on Gleevec, I am functioning pretty darn well. Thanks in advance for any thoughts. I remember several others switching meds, like . I remember posting progress and that there were bumps in the road. I guess this has got me pretty freaked out. Did not sleep at all last night. I would dose off, but wake up thinking about this and am nervous about my insurance going along, as the last I researched, Sprycell was a good bit more money. Thanks Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food. <http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002> aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi A wash out period is used by many doctors. Have you any idea what dose of Sprycel you will be taking? Many doctors will start you on a lower dose of Sprycel and ramp up until you reach the optimum dose. Good luck with the switch. 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 letitbe@... Sent: May 22, 2008 6:58 AM Subject: [ ] switching from Gleevec to Sprycell? Hello to everyone, So looks like my Onc is most likely swapping my from Gleevec to Sprycell. The plan here is to get me some relief as I still am having pretty bad head pain and muscle fatigue. The Dr said after 15 months, we can genuinely call this intolerance as it is not getting better and there are some definite quality of life issues. This plan is not in concrete. I am going in this morning for a PCR-ABL. Then he and I will get together when that comes back. Just so I have my ducks in a row and seem like I know what I am talking about =) Is there a sort of clean out Gleevec period, where I have no meds prior to going on Sprycell or do I wake up one morning when the Gleevec is empty and start right in on Sprycell? I am all to familiar with the Gleevec side effects, what do I have to look forward to with Sprycell? Another concern, I am a sales rep, I am also the next few months in my prime selling season. Would it be better to insist on waiting to start Sprycell till after my prime season ends or is it safe to dive in, head first? I just do not want to find myself with 4-6 weeks left to go in my season and be sick as a dog, not able to work because I swapped into a new med. While I am uncomfortable a good bit on Gleevec, I am functioning pretty darn well. Thanks in advance for any thoughts. I remember several others switching meds, like . I remember posting progress and that there were bumps in the road. I guess this has got me pretty freaked out. Did not sleep at all last night. I would dose off, but wake up thinking about this and am nervous about my insurance going along, as the last I researched, Sprycell was a good bit more money. Thanks Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food. <http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002> aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Yes it is fun (not). If 200mg glivec holds for me. I can certainly put up with these symptoms. What part of OZ did you visit? Regards, Down Under _____ From: [mailto: ] On Behalf Of letitbe@... Sent: Thursday, 22 May 2008 10:37 PM Subject: Re: [ ] switching from Gleevec to Sprycell? , those symptoms sounds so familiar, I have pain behind my left eye brow right now. Just so weird, and I am over it! But, I always say, this issues are such a small price to pay. We need to have a Aussie chat one day. I have not been in a few years, but have so many friends in AU. cheers, chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food. <http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002> aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Chris: I switched to Sprycel three months ago and have no problems so far. Effects vary from patient to patient. You can read up on the most common side effects and potential problems on the website: www.sprycel.com I had a 48 hour hiatus between stopping Gleevec and starting Sprycel. Good luck with the transition. Best wishes, Carl letitbe@... wrote: Hello to everyone, So looks like my Onc is most likely swapping my from Gleevec to Sprycell. The plan here is to get me some relief as I still am having pretty bad head pain and muscle fatigue. The Dr said after 15 months, we can genuinely call this intolerance as it is not getting better and there are some definite quality of life issues. This plan is not in concrete. I am going in this morning for a PCR-ABL. Then he and I will get together when that comes back. Just so I have my ducks in a row and seem like I know what I am talking about =) Is there a sort of clean out Gleevec period, where I have no meds prior to going on Sprycell or do I wake up one morning when the Gleevec is empty and start right in on Sprycell? I am all to familiar with the Gleevec side effects, what do I have to look forward to with Sprycell? Another concern, I am a sales rep, I am also the next few months in my prime selling season. Would it be better to insist on waiting to start Sprycell till after my prime season ends or is it safe to dive in, head first? I just do not want to find myself with 4-6 weeks left to go in my season and be sick as a dog, not able to work because I swapped into a new med. While I am uncomfortable a good bit on Gleevec, I am functioning pretty darn well. Thanks in advance for any thoughts. I remember several others switching meds, like . I remember posting progress and that there were bumps in the road. I guess this has got me pretty freaked out. Did not sleep at all last night. I would dose off, but wake up thinking about this and am nervous about my insurance going along, as the last I researched, Sprycell was a good bit more money. Thanks Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi I switched from nilotinib to Dasatinib with no wash out period, not sure why but Thursday Nilotinib Friday Morning Dasatinib.. was a bad scene for about two three days, but ok now... One of the warning is to watch weight, water in lungs, pain in head itch etc but it goes away. I had bad chills but they too went away so I feel ok now.. SkipD dx'ed 30++++ years ago --- letitbe@... wrote: > Hello to everyone, > > So looks like my Onc is most likely swapping my from > Gleevec to Sprycell. > The plan here is to get me some relief as I still am > having pretty bad head > pain and muscle fatigue. The Dr said after 15 > months, we can genuinely call > this intolerance as it is not getting better and > there are some definite > quality of life issues. This plan is not in > concrete. I am going in this morning > for a PCR-ABL. Then he and I will get together > when that comes back. > > Just so I have my ducks in a row and seem like I > know what I am talking > about =) Is there a sort of clean out Gleevec > period, where I have no meds prior > to going on Sprycell or do I wake up one morning > when the Gleevec is empty > and start right in on Sprycell? > > I am all to familiar with the Gleevec side effects, > what do I have to look > forward to with Sprycell? > > Another concern, I am a sales rep, I am also the > next few months in my prime > selling season. Would it be better to insist on > waiting to start Sprycell > till after my prime season ends or is it safe to > dive in, head first? I just > do not want to find myself with 4-6 weeks left to go > in my season and be sick > as a dog, not able to work because I swapped into a > new med. While I am > uncomfortable a good bit on Gleevec, I am > functioning pretty darn well. > > Thanks in advance for any thoughts. I remember > several others switching > meds, like . I remember posting progress > and that there were bumps in > the road. I guess this has got me pretty freaked > out. Did not sleep at all > last night. I would dose off, but wake up thinking > about this and am > nervous about my insurance going along, as the last > I researched, Sprycell was a > good bit more money. > > Thanks > Chris > > > > **************Get trade secrets for amazing burgers. > Watch " Cooking with > Tyler Florence " on AOL Food. > (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 , I flew from Auckland to Melbourne, visited for a few weeks with mates, and then to Brissy and a little south, I have very close family like group on the Gold Coast, Mermaid Waters. I was supposed to be back in August and over Father's Day weekend (AU that is), Labor Day for us. But, that has been postponed. If everything falls into place, mid Feb next year. But, too early to tell on that. Cheers, Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 , thanks for sharing your experience with me. I am a bit apprehensive on the swap and this is my busy season, SO, I may ask that we postpone the change in meds till later in August, once things settle a bit. I just do not want to take any chances on disrupting what little is left of the weirdest selling season I have ever had in 20 years. chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Skip, thanks SO much for your perspective and experience. Now, I just hope my insurance is like minded. It is probably a few weeks away before I see the doc, and 19 June for sure as I have an appt set already. If I have learned anything the last 15 months of CML in my life, knowingly - anyway, plan, plan, plan and then prepare! lol Cheers, Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi - we are way down south from Brisbane in . In my mind due to heat and humidity, only nice time to visit there is late winter to spring LOL. We did an outback trip as well which was great and went as high as Rockhampton. Did you spend much time in NZ? I had 3 weeks there last year, beautiful place. Regards, Down Under _____ From: [mailto: ] On Behalf Of letitbe@... Sent: Friday, 23 May 2008 10:23 AM Subject: Re: [ ] switching from Gleevec to Sprycell? , I flew from Auckland to Melbourne, visited for a few weeks with mates, and then to Brissy and a little south, I have very close family like group on the Gold Coast, Mermaid Waters. I was supposed to be back in August and over Father's Day weekend (AU that is), Labor Day for us. But, that has been postponed. If everything falls into place, mid Feb next year. But, too early to tell on that. Cheers, Chris **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food. <http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002> aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
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