Re: [CMLHope] CML Newbie
Yes I was on Allopurinal as well for a while. I just remembered that when you posted. Finally taken off both when I went on Gleevec. In a message dated 3/10/2013 4:56:58 P.M. Eastern Daylight Time, wa2...@gmail.com writes: And hi right back at you. You didn't leave your actual name so I don't know who to address this to. All of what your now going through is what initially happens when your first diagnosed with CML and then put onto a TKI which Gleevec is one of. Some of the symptoms that you are experiencing may get much better as your body acclimates to the Gleevec, and some may just linger but in time you will adjust to most of these side effects. Don't be afraid if your doctor decides to switch you to another TKI because some are actually better then some others depending on your body. I'm just wondering why your doctor only put you on hydroxyurea initially and not Allopurinal as well. This drug helps get rid of any access uric acid thus avoiding any symptoms of the gout. Now just to let you know I had CML almost 23 years ago and have never been on any of these TKI's because none were around at the time. I had to get a bone marrow transplant. If any of these drugs would have been around then I would have probably opted for them rather then the transplant. Just because you have CML it shouldn't stop you from living your life. When you get used to having all of these side effects, and I will tell you that they will get better because of all that I have heard from people that are on them. Some have actually gone into PCRU and are not taking them anymore. PCRU is when they can not detect any more CML cells in your body. This may happen to some people on these TKI's So, mystery person, you just keep going on with your life because CML will probably not kill you. However I do suggest that you stay clear of speeding buses, they just may. Whenever I write something I always end it with two numbers... 18 which is a symbol for life. 18's to you "mystery person" Marty On Sat, Mar 9, 2013 at 4:17 PM, <_mylissal@yahoo.ca_ (mailto:mylis...@yahoo.ca) > wrote: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscr
Re: [CMLHope] CML Newbie
The platelets will come down; it takes a while to get everything under control; I managed on Gleevec by planning and eating a large breakfast to take with my pills. It seemed like to took forever for them to come down. My doctor checked my blood every few days in the beginning. Don't eat anything spicy and have a large meal when you take Gleevec. I never ate much breakfast and it was a challenge to come up with large meals but I did it. Jeanie<3 In a message dated 3/10/2013 10:37:08 A.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] CML Newbie
I get some bone pain, dropped a bar of soap on my right foot, behind my little toe three years ago. Have had x-rays, MRI, etc. and they can't find anything wrong. Been to two different doctors and same story, sorry for you pain. I just live with it. As for cramps in the legs, if you start getting them put a bar of dial soap between the sheets and that should help a little. I started Gleevec on January 9th 2000. Been on 300 mg all these years and their are good days and then their are the bad days. The way I look at it, it's better then dead, sorry about the last line. Hope things work out for you. Maybe someone else has some idea's for you. greenie In a message dated 3/10/2013 10:37:10 A.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope] CML Newbie
To Mylissal: Try quinine tablets, they cured my problem when I had severe cramping in my legs while on gleevec. Take as directed. Best wishes, Susan Zimmerman From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Gopalsamy Ragavan Sent: Sunday, March 10, 2013 10:48 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] CML Newbie Hi, Sorry to know about the CML diagnosis. I was diagnosed at March 2012. I am also on imatinib. I too faced pain initially. Now I dont have body pain. I am not sure about the counts. Please check with your onco about the counts. Hope you will find comfortable soon. regards, Ragavan On Sun, Mar 10, 2013 at 2:47 AM, wrote: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com <mailto:cmlhope%2bunsubscr...@googlegroups.com> . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] CML Newbie
And hi right back at you. You didn't leave your actual name so I don't know who to address this to. All of what your now going through is what initially happens when your first diagnosed with CML and then put onto a TKI which Gleevec is one of. Some of the symptoms that you are experiencing may get much better as your body acclimates to the Gleevec, and some may just linger but in time you will adjust to most of these side effects. Don't be afraid if your doctor decides to switch you to another TKI because some are actually better then some others depending on your body. I'm just wondering why your doctor only put you on hydroxyurea initially and not Allopurinal as well. This drug helps get rid of any access uric acid thus avoiding any symptoms of the gout. Now just to let you know I had CML almost 23 years ago and have never been on any of these TKI's because none were around at the time. I had to get a bone marrow transplant. If any of these drugs would have been around then I would have probably opted for them rather then the transplant. Just because you have CML it shouldn't stop you from living your life. When you get used to having all of these side effects, and I will tell you that they will get better because of all that I have heard from people that are on them. Some have actually gone into PCRU and are not taking them anymore. PCRU is when they can not detect any more CML cells in your body. This may happen to some people on these TKI's So, mystery person, you just keep going on with your life because CML will probably not kill you. However I do suggest that you stay clear of speeding buses, they just may. Whenever I write something I always end it with two numbers... 18 which is a symbol for life. 18's to you "mystery person" Marty On Sat, Mar 9, 2013 at 4:17 PM, wrote: > Hi there, > > I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea > initially, but am now on Gleevec. My white counts are now at the low end > of normal (4.8), but my platelets remain high. Anyone else experience > this? Is this normal with CML? > > Also have been experiencing excruciating pain in my shin boneshave > tried hot baths, A535, heating pad etc but nothing seems to relieve it. > Anybody found anything that helps with the pain? I've been told not to > take tylenol, aspirin or advil as they interact with the Gleevec. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] CML Newbie
Hi, Sorry to know about the CML diagnosis. I was diagnosed at March 2012. I am also on imatinib. I too faced pain initially. Now I dont have body pain. I am not sure about the counts. Please check with your onco about the counts. Hope you will find comfortable soon. regards, Ragavan On Sun, Mar 10, 2013 at 2:47 AM, wrote: > Hi there, > > I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea > initially, but am now on Gleevec. My white counts are now at the low end > of normal (4.8), but my platelets remain high. Anyone else experience > this? Is this normal with CML? > > Also have been experiencing excruciating pain in my shin boneshave > tried hot baths, A535, heating pad etc but nothing seems to relieve it. > Anybody found anything that helps with the pain? I've been told not to > take tylenol, aspirin or advil as they interact with the Gleevec. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] CML Newbie
Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] CML newbie
Well, I've just been diagnosed. Normally I'm a student of the Groucho Marx theory of joining things -"I wouldn't join any club that would have me as a member". Guess I have no choice in the matter this time. I'm taking the miracle drug (the big G) and doing all the right things (I hope!) to live with this. I'm loving the cramps and nausea! Forgive my levity, but we all deal the way we must. More power to all of you. Live long and prosper, be healthy, enjoy your lives. I'm not much of a poster, but I'm out here reading. Happy anniversary to those celebrating. My dog is nudging me for some love. It's sunny out. I feel like I've been given a very special gift. Is that wierd? Celebrate joy. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
