[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] Newly diagnosed with CML
I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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, 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 - 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] Newly diagnosed with CML
Hello I was on Gleevec from 2001 until September of last year. Bone pain will subside. Supposedly that is the gleevec working. Cramps did not subside. The doc told me to up water and potassium but it was touch and go. It gets better the lower the dose. I started at 800 per day down 2 400 5 years later but had nausea, cramping the entire time. Gained 30lbs bcaus had 2 keep stomach full. Been on tasigna since sept and only headaches so far. Lost 15 lbs too. Sent from my iPhone On Mar 6, 2013, at 11:12 PM, mylis...@yahoo.ca wrote: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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] Newly diagnosed with CML
I was diagnosed March '09 and put on 400 mg. One year later, it was bumped to 600 which is where I still stand. Regretfully, the bone pain and charlie horses are part of the package. My doctor said it was OK for me to try salonpas, pain patches, and they have been helpful for my back, hip and knees. You can find them in Walgreens and most stores. The ones I'm referring to are the small patches that come in a 40 count box. As to the charlie horses, I sleep with a bar of Dial soap between my bottom and top sheets. I thought it was an old wives' tale when someone suggested it but for 4 years, I have yet to wake up with those awful cramps. I still get them other times and they are painful. You will find on this site really positive, warm and caring people, many who have been living with CML far longer than I. A positive attitude is so key to good results. We have an illness that now has numerous drug therapies and many, many people have outlived their original diagnosis by a very long time. As a new member of a group none of us would have wished to join, I welcome you and please feel free to post any time you have a question. Some of the best advice you will get is here and without question, the friendship, support and love the fellow CML warriors give is priceless. Best wishes to you as you continue on the journey. Marcie Baltimore -Original Message- From: mylissal mylis...@yahoo.ca To: cmlhope cmlhope@googlegroups.com Sent: Sun, Mar 10, 2013 10:37 am Subject: [CMLHope] Newly diagnosed with CML I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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] Re: Newly diagnosed with CML
Dear Newly Diagnosed: The side effects you’re describing are pretty common. They are caused both by CML and treatment. What is important to know is that the longer you are in treatment the more the side effects will diminish, and there are many things that you can do right now to mitigate the side effects and make life easier. This presentation from Carolyn Blasdel, CML nurse practitioner who works directly with Dr. Brian Druker, one of the developers of Gleevec, will help you with managing side effects including muscle cramps. Basically mineral depletion causes muscle cramps, and calcium and potassium supplements can help. http://www.vimeo.com/16220208 This PDF file from a presentation she did for LLS has helpful advice too. http://www.cancereducation.com/cancersyspagesnb/transcripts/lls/35/aawe.pdf Your oncologist was trying to reassure you in mentioning that you may have to try a different drug. There are now more options for CML patients than ever before - six of them - and treatment has become more personalized and tailored to the individual. If you are in the US I suggest you visit the National CML Society website for more information at http://www.nationalcmlsociety.org/ If you are in another country then let me know and I will see if there is a CML advocacy group in your country and provide information. Wishing you the best, Pat Elliott CML patient and advocate On Mar 6, 10:12 pm, mylis...@yahoo.ca wrote: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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] Newly diagnosed with CML
Hi newbie, I was Dxed in April of 1997 I was put on interferon until Gleevec came along in 2001 was in remission April of 2002. Been on gleevec ever since, I experienced the cramping and sometimes still do. I found if I drank Tonic water before going to bed and again if cramps came during the night tthey didn't last as long. I said something to my Onco about the cramps after several years of being in remission he asked if I wanted to change meds. He took one look at me and said that's what I thought you'd say, it ain't broke don't try to fix it. Also have had bone pain in shins they just had to go away on their own. As far as pain after the severe cramping I have taken Advil but sparingly. Any pain killer with aspamedifin (misspelling) LOL Keep asking questions on this site and you'll learn a lot I sure did! All my best to you new warrior!--- On Wed, 3/6/13, mylis...@yahoo.ca mylis...@yahoo.ca wrote: From: mylis...@yahoo.ca mylis...@yahoo.ca Subject: [CMLHope] Newly diagnosed with CML To: cmlhope@googlegroups.com Date: Wednesday, March 6, 2013, 11:12 PM I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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, 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 - 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
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, 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 - 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] Newly diagnosed with CML
Hi Mylissal: I responded to your first e-mail in a quick fashion about the quinine. I also had pain in my bones while taking gleevec. The extreme cramping was really debilitating, so the quinine helped. I did take advil, which is naproxen sodium, as the doc said that was much better than Tylenol or aspirin. That also helped with the pain in the bones. Massaged therapy also really helped me get the toxins out of my system caused by the reaction to the gleevec. I had a car accident which allowed me to have coverage through a chiropractor's office for those wonderful massages. My suggestion is a Swedish massage until you can bear the heavier touch later. You must take lots and lots of water(with lemon added is better), before and after having a massage to rid yourself of the toxins. I sure do hope this helps! I've been medicine free for six years while still showing signs of CML. I am still in cellular remission, but not in molecular remission for all but one year of that time. I am a walking miracle, and I am so thankful to God. I do keep a watch on my blood counts to make sure I am still in normal range there. I was on gleevec for two and a quarter years from Feb. 2005 to May 2007 when I had a brain bleed caused (I think) by the gleevec. Two more small brain bleeds followed. So then in May of 2010 I had a full-blown stroke after doing much exercise repeatedly. Apparently it was too much for me with this weakness for brain bleeding not caused by clots. Every day is a gift! Many many wishes for a quick recovery, Susan Zimmerman From: cmlhope@googlegroups.com [mailto:cmlho p...@googlegroups.com] On Behalf Of mylis...@yahoo.ca Sent: Thursday, March 07, 2013 12:13 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Newly diagnosed with CML I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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
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] Newly diagnosed with CML
I have had almost all of your problems, plus a view extra. Very watery eyes and blurred vision. Drink lots of water that will help somewhat. I get cramps the same, fingers, hands, feet, legs, cramps in muscles I didn't know I had. Throw a bar of dial soap between the sheets for the legs that will help. Other problems are in most part the Gleevec. Some of them will go away in time and just hang in their it gets better. greenie In a message dated 3/10/2013 10:37:10 A.M. Eastern Daylight Time, mylis...@yahoo.ca writes: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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] Newly diagnosed with CML
Hi Marcie, it's greenie. The bar of soap does work, one thing I might add is to each time the soap you take a bath or shower starts to get to small to use exchange the one between the sheets with a new one and you the old one that you were using for the cramps. In a message dated 3/10/2013 3:30:00 P.M. Eastern Daylight Time, margoo...@aol.com writes: I was diagnosed March '09 and put on 400 mg. One year later, it was bumped to 600 which is where I still stand. Regretfully, the bone pain and charlie horses are part of the package. My doctor said it was OK for me to try salonpas, pain patches, and they have been helpful for my back, hip and knees. You can find them in Walgreens and most stores. The ones I'm referring to are the small patches that come in a 40 count box. As to the charlie horses, I sleep with a bar of Dial soap between my bottom and top sheets. I thought it was an old wives' tale when someone suggested it but for 4 years, I have yet to wake up with those awful cramps. I still get them other times and they are painful. You will find on this site really positive, warm and caring people, many who have been living with CML far longer than I. A positive attitude is so key to good results. We have an illness that now has numerous drug therapies and many, many people have outlived their original diagnosis by a very long time. As a new member of a group none of us would have wished to join, I welcome you and please feel free to post any time you have a question. Some of the best advice you will get is here and without question, the friendship, support and love the fellow CML warriors give is priceless. Best wishes to you as you continue on the journey. Marcie Baltimore -Original Message- From: mylissal mylis...@yahoo.ca To: cmlhope cmlhope@googlegroups.com Sent: Sun, Mar 10, 2013 10:37 am Subject: [CMLHope] Newly diagnosed with CML I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [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_
[CMLHope] Re: CML Newbie
All suggestions all all tried and proven aids. However, I take 325mg asprin daily for a blood thinner, Statin drugs, and Advil for the aches and pain. tylenol is a big no'no. I was diagnosed in 2003 and spent 5 years on gleveec. Statin drugs, tylenol, and gleevec put stress on the liver, so need to be monitored closely. Richard H. On Saturday, March 9, 2013 3:17:22 PM UTC-6, myli...@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 - 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] Thankyou
Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [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] Re: Thankyou
Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [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] Re: Thankyou
Thanks Pat - I appreciate it From: Pat pfemail...@gmail.com To: CMLHope cmlhope@googlegroups.com Sent: Sunday, March 10, 2013 9:00:12 PM Subject: [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [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 a topic in the Google Groups CMLHope group. To unsubscribe from this topic, visit https://groups.google.com/d/topic/cmlhope/Tx0yLOjocdE/unsubscribe?hl=en. To unsubscribe from this group and all its topics, 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] Thankyou
Hi Mylissa, Warm regards. This group has people across the globe. :) Like Mini Europe in Belgium, this group is mini world. :) The initial days look tougher. It will be one year for me by end of March after CML diagnosis. It was a long journey to this situation. Confidence and passion towards life helps a lot. I am a believer. That is also helping me. The muscle pain and cramps were there till few months back. Once I started back my worklife, I dont have many of the discomforts. Hope you will also be fine in all the aspects. :) Wish you all the happiness. regards, Ragavan On Mon, Mar 11, 2013 at 6:12 AM, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [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.
