Re: [CMLHope] Newly diagnosed with CML
My first onc told me he had a male patient who was in so much pain in his legs and joints he could barely stand it. I think he was wondering why I didn't. I had all the sweats and fevers during my first battle, and it was probably a little of both the CML and the meds. I use to wake up in a sweat and take something for the fever. My spleen never became a problem, maybe because they caught it so soon. My platelets and WBC stayed high for a while; it was a mystery to my onc. Blessings Jeanie<3 In a message dated 3/10/2013 10:37:07 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, the weather is in the low 80's going to get a little rain tomorrow which is O.K. Move into a house a few months ago, 55 and older, love it here. After a 2 bedroom, 2 bath apartment on the lake was O.K. but the no-see-em's ate me alive. Now be are across from a golf course and the house is large. Grace has be putting in flowers, painting,etc. And the next day I can't move. I'm getting to old for this, but the place is looking real good. Keep in touch and the best to you. greenie In a message dated 3/11/2013 2:35:24 P.M. Eastern Daylight Time, margoo...@aol.com writes: Hi Greenie: Good to hear from you. How are things in Florida? We are hoping that spring warm weather is on its way to Baltimore. Can't live without that Dial soap. I travel with a bar of it! Stay well. Marcie Sent from my iPad On Mar 10, 2013, at 5:27 PM, _Myvety2k@aol.com_ (mailto:myvet...@aol.com) wrote: 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, _margood18@aol.com_ (mailto: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 <_mylissal@yahoo.ca_ (mailto:mylis...@yahoo.ca) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto: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
Re: [CMLHope] Newly diagnosed with CML
Hi all. Had all the same side effects from gleevec. Stayed on it for 5 years. It quit working for me and was put on tasigna. That was an awful experience for me. Had to have blood transfusion and it quit working also. Finally was put on sprycel. It put me into PCRU. Leg pain is gone cramps are gone. However lots of people are doing good on tasigna and gleevec. If your symptoms are getting so bad. U might try something new. We just don't know how each person will do on each drug. Good luck to u Jeanie dx 2004 Gleevec Tasigna Sprycel Still kicking Sent from my iPhone On Mar 10, 2013, at 5:22 PM, myvet...@aol.com wrote: > 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 recommendedtrying 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] 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@googl
Re: [CMLHope] Newly diagnosed with CML
Hi Greenie: Good to hear from you. How are things in Florida? We are hoping that spring warm weather is on its way to Baltimore. Can't live without that Dial soap. I travel with a bar of it! Stay well. Marcie Sent from my iPad On Mar 10, 2013, at 5:27 PM, myvet...@aol.com wrote: > 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 > To: cmlhope > 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
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 To: cmlhope 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 su
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 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 y
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 wrote: From: 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] 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 To: cmlhope 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.
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.
[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.
