?Peripheral Neuropathy. Any indication of Diabetes? Sent from my iPad
> On Mar 2, 2016, at 4:30 AM, [email protected] wrote: > > > [email protected] Google Groups > Topic digest > View all topics > Hey, what happened to everyone? - 11 Updates > Hey, what happened to everyone? > Norm <[email protected]>: Mar 01 05:16AM -0800 > > I am still alive and kicking but one of my kickers is giving me fits. I > think it is plantar fasciitis. > > I haven't posted in awhile and miss Millie may she rest in peace. > Jeanie is my cruise mentor and my wife and I along with a few other friends > just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, > and Cozumel. > > We were busy with one of my cousin staying here quite often while he was > being treated for stage 4 Melanoma, he passed and is walking with Jesus > now. Way too young and such a very good person. > > My beloved dachshund, Hans, turned 12 yesterday. About a month ago we were > given the devastating news that he has lymphoma. I never knew it would be > so difficult to have to deal with the knowledge that one day, much sooner > than expected, I would have to ease his way to a comfortable ending. > I dread this as he was my buddy and comfort while I was recovering from my > relapse of CML. > He is being spoiled even more than ever now and will be until that time > comes. Millie would understand. > > April 1st will mark 13 years since my diagnosis and the start of Gleevec. > As some know, I relapsed and Gleevec no longer worked. > I was fortunate enough to get in the clinical trial for AMN107 during the > phase 1 study. > As you can tell, it worked but not before I entered blast and was one very > sick puppy. I believe that one night the angel of death came for me and for > some reason let me stay. > All I know is Dr Kantarjian tells me to thank God and I do. > > My son has finished his tour of duty with the USMC and has been discharged > as a Sargent with the Achievement medal. We are extremely proud of our son, > and our daughter who is still teaching photography to high schoolers. > > I have been training my replacements at work so I can eventually retire. I > am ready but they are not.....lol.. > > My macular degeneration is stable and I have not had any shots in my eye > for almost 6 months. Still legally blind and that will not change during > my lifetime I suppose. > > I have been playing a lot of golf with my younger brother and we are having > a great time together. He is a good brother that will come and pick me up > and take me golfing even if it means spending the whole day with me. Life > is good. > > This past December marked 11 years that I have been on Tasigna. I have > never been undetectable but it is generally only a few cells in 10 thousand. > > I will try to check in more often but life has been keeping me so busy. > > Blessings to all > Norm > > On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote: > sherri swanson <[email protected]>: Mar 01 08:18AM -0600 > > Hi Everyone. > > Sorry to have been so quite but I've been dealing with a lot of crazy > health issues. I've been on Gleevec for 13 years and have had every side > effect it can throw at me and have dealt with it. At the beginning of 2015 > I began having some edema in my legs and I told my GP about and he said it > was my Gleevec. I said okay I talk to my oncologist. I had had swelling > before with the Gleevec but never in my legs and never like this. SO off to > the oncologist and he said I should talk to my kidney doctor as I have > Stage 3 kidney disease. Off to the kidney doctor I went and he said it was > the Gleevec. I said I didn't think it was and told him about all the side > effects I had in the past. Well, that was the end of all the conversations. > I would see the doctors and every time they would tell me how swollen my > legs and feet were but each would point to the other and then to the > Gleevec. > > Finally in December 2015, I could no longer stand the pain and my calves > were now 24 inches around so I called my GP and got in to see him right > away. I was sent to a cardiologist and he told me the swelling was not > caused by medications. After a bunch of very expensive tests, he told me it > was the Gleevec and I had to stop it right away. I looked at him like he > was nuts and called my oncologist and told him was said. We agreed that I > would stop the Gleevec for 2 weeks and if the swelling did not improve I > would go back on it. > > After 2 weeks the swelling did not improve I actually got worse and the > oncologist would not put me back on the Gleevec as he believed that it was > now the the medication masking something that was causing the issue. He > sent me to Northwestern to see Dr. Altman. > > After meeting with her and having a tremendous amount of blood drawn and > making appointments with other specialists at Northwestern including a > cardiac oncologist, I feel that I am on the road to getting this problem > with my legs resolved. I am waiting to hear from Dr. Altman to find out > what my BCR-ABL was as well as my WBC, as my white count was climbing since > I've been off the Gleevec. I've seen so many doctors, I feel like I've met > every doctor in the state of Illinois. That is way to many. I'm hopeful > that I'll be able to start my Gleevec today. As for the pain and swelling > in my legs, I'll just live with it until we find out what the heck it is > and how to treat it. As of today, I have been off Gleevec for 2 months and > the pain and swelling has not changed. The pain in my legs is like an > electric shock and they feel like they are on fire. And I do mean fire. > Like someone has poured gasoline on them and lit a match and tossed it on > my legs. It's awful. That I know of Gleevec does not have those side > effects, and Dr. Altman did think so either. > > Has anyone here that has taken Gleevec had any side effects like that? > > I hope everyone has a good week and stays well. > > Strength doesn't come from what you can do. It comes from overcoming the > things you thought couldn't. > > L'chaim, > > Sherri > > [email protected]: Mar 01 10:36AM -0500 > > Sherri, I've been going to Northwestern starting in Jan. of 1999. My first > Doctor was Dr. Tallman and was put into a study the first week of Jan. > 2000 on STI571 before it was approved by the FDA. I was one of 8 people in > the study at Chicago and 200 nation wide. Dr. Tallman first put me on > Interferon witch almost killed me, 3 months of that was a living hell. I have > this > backwards, I was on Interferon first of 1999 for 3 months and it didn't > turn out well for me. Then after that he put me in the STI571 study. Wow, I > think I need a drink and I don't drink. > > So, 2 months later he called me for the STI571 study and have been on > Gleevec for over 16 years. And I do get some swelling on my feet and ankles > if > I stand too long on my feet. I will take a water bill 20mg, I cut it in > haft and take in the morning. Within a day the swelling does go down almost > to normal. > > Dr. Altman is my Doctor also after Dr. Tallman left for Cornell University > a few years back. Northwestern is one of the best in the country. I will > be flying into Chicago the first of June for my yearly appointment to see > her, get my blood work, etc. and see family members that live in the area. > Your in good hands. Keep us all informed on how things are going for you > we all will be thinking of you. > > Greenie > Fort Myers, FL. > club member 48 > > > > > In a message dated 3/1/2016 9:19:03 A.M. Eastern Standard Time, > [email protected] writes: > > > Hi Everyone. > > > Sorry to have been so quite but I've been dealing with a lot of crazy > health issues. I've been on Gleevec for 13 years and have had every side > effect > it can throw at me and have dealt with it. At the beginning of 2015 I > began having some edema in my legs and I told my GP about and he said it was > my > Gleevec. I said okay I talk to my oncologist. I had had swelling before > with the Gleevec but never in my legs and never like this. SO off to the > oncologist and he said I should talk to my kidney doctor as I have Stage 3 > kidney disease. Off to the kidney doctor I went and he said it was the > Gleevec. I said I didn't think it was and told him about all the side effects > I > had in the past. Well, that was the end of all the conversations. I would see > the doctors and every time they would tell me how swollen my legs and feet > were but each would point to the other and then to the Gleevec. > > > Finally in December 2015, I could no longer stand the pain and my calves > were now 24 inches around so I called my GP and got in to see him right > away. I was sent to a cardiologist and he told me the swelling was not caused > by medications. After a bunch of very expensive tests, he told me it was the > Gleevec and I had to stop it right away. I looked at him like he was nuts > and called my oncologist and told him was said. We agreed that I would stop > the Gleevec for 2 weeks and if the swelling did not improve I would go > back on it. > > > After 2 weeks the swelling did not improve I actually got worse and the > oncologist would not put me back on the Gleevec as he believed that it was > now the the medication masking something that was causing the issue. He sent > me to Northwestern to see Dr. Altman. > > > After meeting with her and having a tremendous amount of blood drawn and > making appointments with other specialists at Northwestern including a > cardiac oncologist, I feel that I am on the road to getting this problem with > my > legs resolved. I am waiting to hear from Dr. Altman to find out what my > BCR-ABL was as well as my WBC, as my white count was climbing since I've been > off the Gleevec. I've seen so many doctors, I feel like I've met every > doctor in the state of Illinois. That is way to many. I'm hopeful that I'll > be > able to start my Gleevec today. As for the pain and swelling in my legs, > I'll just live with it until we find out what the heck it is and how to > treat it. As of today, I have been off Gleevec for 2 months and the pain and > swelling has not changed. The pain in my legs is like an electric shock and > they feel like they are on fire. And I do mean fire. Like someone has poured > gasoline on them and lit a match and tossed it on my legs. It's awful. > That I know of Gleevec does not have those side effects, and Dr. Altman did > think so either. > > > Has anyone here that has taken Gleevec had any side effects like that? > > > I hope everyone has a good week and stays well. > > > Strength doesn't come from what you can do. It comes from overcoming the > things you thought couldn't. > > > L'chaim, > > > Sherri > > > > On Tue, Mar 1, 2016 at 7:16 AM, Norm <[email protected]_ > (mailto:[email protected]) > wrote: > > I am still alive and kicking but one of my kickers is giving me fits. I > think it is plantar fasciitis. > > I haven't posted in awhile and miss Millie may she rest in peace. > Jeanie is my cruise mentor and my wife and I along with a few other > friends just got back a couple of weeks ago from a 7 day cruise to Jamaica, > Cayman, and Cozumel. > > We were busy with one of my cousin staying here quite often while he was > being treated for stage 4 Melanoma, he passed and is walking with Jesus > now. Way too young and such a very good person. > > My beloved dachshund, Hans, turned 12 yesterday. About a month ago we > were given the devastating news that he has lymphoma. I never knew it would > be > so difficult to have to deal with the knowledge that one day, much sooner > than expected, I would have to ease his way to a comfortable ending. > I dread this as he was my buddy and comfort while I was recovering from my > relapse of CML. > He is being spoiled even more than ever now and will be until that time > comes. Millie would understand. > > April 1st will mark 13 years since my diagnosis and the start of Gleevec. > As some know, I relapsed and Gleevec no longer worked. > I was fortunate enough to get in the clinical trial for AMN107 during the > phase 1 study. > As you can tell, it worked but not before I entered blast and was one very > sick puppy. I believe that one night the angel of death came for me and > for some reason let me stay. > All I know is Dr Kantarjian tells me to thank God and I do. > > My son has finished his tour of duty with the USMC and has been discharged > as a Sargent with the Achievement medal. We are extremely proud of our > son, and our daughter who is still teaching photography to high schoolers. > > I have been training my replacements at work so I can eventually retire. I > am ready but they are not.....lol.. > > My macular degeneration is stable and I have not had any shots in my eye > for almost 6 months. Still legally blind and that will not change during my > lifetime I suppose. > > I have been playing a lot of golf with my younger brother and we are > having a great time together. He is a good brother that will come and pick me > up > and take me golfing even if it means spending the whole day with me. Life > is good. > > This past December marked 11 years that I have been on Tasigna. I have > never been undetectable but it is generally only a few cells in 10 thousand. > > I will try to check in more often but life has been keeping me so busy. > > Blessings to all > Norm > > On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote: > > > > Why the silence? I miss everyone. > > > 18's, > > > Marty > > > > > > > > -- > -- > [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 [email protected]_ > (mailto:[email protected]) > To unsubscribe from this group, send email to > [email protected]_ > (mailto:[email protected]) > 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 [email protected]_ > (mailto:[email protected]) . > For more options, visit https://groups.google.com/d/optout. > > > > > > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]_ > (mailto:[email protected]) . > For more options, visit https://groups.google.com/d/optout. > ANGELYN ESDERS <[email protected]>: Mar 02 12:05AM > > I also have kidney disease. I have been on Gleevec since Jan. 2001 (300mg > daily). I have occasionally had swollen legs, but no one ever indicated that > it might be from Gleevec. I have never had the burning either. SO SORRY you > are having this problem. I hope they find the cause soon.Wishing good things > your way.Angie > > From: sherri swanson <[email protected]> > To: [email protected] > Sent: Tuesday, March 1, 2016 9:18 AM > Subject: Re: [CMLHope] Re: Hey, what happened to everyone? > > Hi Everyone. > > Sorry to have been so quite but I've been dealing with a lot of crazy health > issues. I've been on Gleevec for 13 years and have had every side effect it > can throw at me and have dealt with it. At the beginning of 2015 I began > having some edema in my legs and I told my GP about and he said it was my > Gleevec. I said okay I talk to my oncologist. I had had swelling before with > the Gleevec but never in my legs and never like this. SO off to the > oncologist and he said I should talk to my kidney doctor as I have Stage 3 > kidney disease. Off to the kidney doctor I went and he said it was the > Gleevec. I said I didn't think it was and told him about all the side effects > I had in the past. Well, that was the end of all the conversations. I would > see the doctors and every time they would tell me how swollen my legs and > feet were but each would point to the other and then to the Gleevec. > > Finally in December 2015, I could no longer stand the pain and my calves were > now 24 inches around so I called my GP and got in to see him right away. I > was sent to a cardiologist and he told me the swelling was not caused by > medications. After a bunch of very expensive tests, he told me it was the > Gleevec and I had to stop it right away. I looked at him like he was nuts and > called my oncologist and told him was said. We agreed that I would stop the > Gleevec for 2 weeks and if the swelling did not improve I would go back on > it. > > After 2 weeks the swelling did not improve I actually got worse and the > oncologist would not put me back on the Gleevec as he believed that it was > now the the medication masking something that was causing the issue. He sent > me to Northwestern to see Dr. Altman. > > After meeting with her and having a tremendous amount of blood drawn and > making appointments with other specialists at Northwestern including a > cardiac oncologist, I feel that I am on the road to getting this problem with > my legs resolved. I am waiting to hear from Dr. Altman to find out what my > BCR-ABL was as well as my WBC, as my white count was climbing since I've been > off the Gleevec. I've seen so many doctors, I feel like I've met every doctor > in the state of Illinois. That is way to many. I'm hopeful that I'll be able > to start my Gleevec today. As for the pain and swelling in my legs, I'll just > live with it until we find out what the heck it is and how to treat it. As of > today, I have been off Gleevec for 2 months and the pain and swelling has not > changed. The pain in my legs is like an electric shock and they feel like > they are on fire. And I do mean fire. Like someone has poured gasoline on > them and lit a match and tossed it on my legs. It's awful. That I know of > Gleevec does not have those side effects, and Dr. Altman did think so either. > > Has anyone here that has taken Gleevec had any side effects like that? > > I hope everyone has a good week and stays well. > > Strength doesn't come from what you can do. It comes from overcoming the > things you thought couldn't. > > L'chaim, > > Sherri > > On Tue, Mar 1, 2016 at 7:16 AM, Norm <[email protected]> wrote: > > I am still alive and kicking but one of my kickers is giving me fits. I think > it is plantar fasciitis. > > I haven't posted in awhile and miss Millie may she rest in peace. > Jeanie is my cruise mentor and my wife and I along with a few other friends > just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, > and Cozumel. > > We were busy with one of my cousin staying here quite often while he was > being treated for stage 4 Melanoma, he passed and is walking with Jesus now. > Way too young and such a very good person. > > My beloved dachshund, Hans, turned 12 yesterday. About a month ago we were > given the devastating news that he has lymphoma. I never knew it would be so > difficult to have to deal with the knowledge that one day, much sooner than > expected, I would have to ease his way to a comfortable ending. > I dread this as he was my buddy and comfort while I was recovering from my > relapse of CML. > He is being spoiled even more than ever now and will be until that time > comes. Millie would understand. > > April 1st will mark 13 years since my diagnosis and the start of Gleevec. > As some know, I relapsed and Gleevec no longer worked. > I was fortunate enough to get in the clinical trial for AMN107 during the > phase 1 study. > As you can tell, it worked but not before I entered blast and was one very > sick puppy. I believe that one night the angel of death came for me and for > some reason let me stay. > All I know is Dr Kantarjian tells me to thank God and I do. > > My son has finished his tour of duty with the USMC and has been discharged as > a Sargent with the Achievement medal. We are extremely proud of our son, and > our daughter who is still teaching photography to high schoolers. > > I have been training my replacements at work so I can eventually retire. I am > ready but they are not.....lol.. > > My macular degeneration is stable and I have not had any shots in my eye for > almost 6 months. Still legally blind and that will not change during my > lifetime I suppose. > > I have been playing a lot of golf with my younger brother and we are having a > great time together. He is a good brother that will come and pick me up and > take me golfing even if it means spending the whole day with me. Life is good. > > This past December marked 11 years that I have been on Tasigna. I have never > been undetectable but it is generally only a few cells in 10 thousand. > > I will try to check in more often but life has been keeping me so busy. > > Blessings to all > Norm > > On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote: > Why the silence? I miss everyone. > 18's, > Marty > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > Marty Gartenberg <[email protected]>: Mar 01 08:49PM -0500 > > Hi Angie, > > Just dropping by to say hello and try to answer your questions. > > Gleevec can cause kidney failure but you also must remember so can a lot of > things. In my case it was all of the Chemotherapy as well as the total body > Radiation, and it took more then 20 years to say kaput to my kidneys. It > starts off very slowly and in my case about 20 years, but everyone is > different. > > Some tips: Keep yourself hydrated. I usually drink Cranberry juice but if > your diabetic then try drinking it in moderation. Keep your blood glucose > always in check. especially if you are diabetic. Try to stay away from what > is called purines. Things like mushrooms, wine, beer, red meat, green leafy > vegetables etc. You should look it up on the web to see. However you can > still eat or drink them in moderation but defiantly no beer or mushrooms > because they are very high in Purines. > > I know that your feet swell up every once in a while but if you ever got > the gout then you really have to watch what you eat or drink, and you don't > necessarily have to have burning unless you have a urinary infection. > > Actually I no longer have this problem. I don't know if you are aware that > I had a kidney transplant one year and a few days ago. > > Since you say that you have kidney disease, you should always monitor your > Creatnine levels. The normal levels should be from around one give or take > a little. Now that is in a healthy person who has two > good functioning kidneys. My latest level was 0.8 and that is only for one > kidney. > > I am now 71 years old and was blessed with a 20 year old young man's kidney > (just one is all that is required) Now I would like to teach you and > everyone else something about organ and blood types. > > I was born with type 0+ blood. My bone marrow donor was B+ in a solid organ > donation (heart, lung, liver etc. the blood type must match between the > donor and the recipient, however in a bone marrow transplant is doesn't > necessarily have to but the recipient may die through this procedure. For > instance I was given 92 blood transfusions as well as many platelets > infusions and many human blood products. And in my case it did work but I > almost died in the process. But Angie almost doesn't count because I am > still here and by the way so are you. > > Now I did mention that I had a kidney transplant just over one year ago, > and guess what the donor was in fact B+ So what does this exactly mean? > Well if My donor was not B+ then I would have waited, who knows? I am now > called a Chimera meaning that in my life time I had two different blood > types, and now only one. > > So the cause was indeed found and "Cured" but I have to now deal with a lot > of other things, and I think that you already know me and I just don't give > up. > > 18's > > Marty > > > > > ANGELYN ESDERS <[email protected]>: Mar 02 02:14AM > > Thanks, Marty. I am monitored by various doctors. No one ever mentioned > Purines to me. No, no gout, thank goodness.Angie > > From: Marty Gartenberg <[email protected]> > To: [email protected] > Sent: Tuesday, March 1, 2016 8:49 PM > Subject: Re: [CMLHope] Re: Hey, what happened to everyone? > > Hi Angie, > Just dropping by to say hello and try to answer your questions. > Gleevec can cause kidney failure but you also must remember so can a lot of > things. In my case it was all of the Chemotherapy as well as the total body > Radiation, and it took more then 20 years to say kaput to my kidneys. It > starts off very slowly and in my case about 20 years, but everyone is > different. > Some tips: Keep yourself hydrated. I usually drink Cranberry juice but if > your diabetic then try drinking it in moderation. Keep your blood glucose > always in check. especially if you are diabetic. Try to stay away from what > is called purines. Things like mushrooms, wine, beer, red meat, green leafy > vegetables etc. You should look it up on the web to see. However you can > still eat or drink them in moderation but defiantly no beer or mushrooms > because they are very high in Purines. > I know that your feet swell up every once in a while but if you ever got the > gout then you really have to watch what you eat or drink, and you don't > necessarily have to have burning unless you have a urinary infection. > Actually I no longer have this problem. I don't know if you are aware that I > had a kidney transplant one year and a few days ago. > Since you say that you have kidney disease, you should always monitor your > Creatnine levels. The normal levels should be from around one give or take a > little. Now that is in a healthy person who has two good functioning kidneys. > My latest level was 0.8 and that is only for one kidney. > I am now 71 years old and was blessed with a 20 year old young man's kidney > (just one is all that is required) Now I would like to teach you and everyone > else something about organ and blood types. > I was born with type 0+ blood. My bone marrow donor was B+ in a solid organ > donation (heart, lung, liver etc. the blood type must match between the donor > and the recipient, however in a bone marrow transplant is doesn't necessarily > have to but the recipient may die through this procedure. For instance I was > given 92 blood transfusions as well as many platelets infusions and many > human blood products. And in my case it did work but I almost died in the > process. But Angie almost doesn't count because I am still here and by the > way so are you. > Now I did mention that I had a kidney transplant just over one year ago, and > guess what the donor was in fact B+ So what does this exactly mean? Well if > My donor was not B+ then I would have waited, who knows? I am now called a > Chimera meaning that in my life time I had two different blood types, and now > only one. > So the cause was indeed found and "Cured" but I have to now deal with a lot > of other things, and I think that you already know me and I just don't give > up. > 18's > Marty > > > > On Tue, Mar 1, 2016 at 7:05 PM, ANGELYN ESDERS <[email protected]> wrote: > > I also have kidney disease. I have been on Gleevec since Jan. 2001 (300mg > daily). I have occasionally had swollen legs, but no one ever indicated that > it might be from Gleevec. I have never had the burning either. SO SORRY you > are having this problem. I hope they find the cause soon.Wishing good things > your way.Angie > > From: sherri swanson <[email protected]> > To: [email protected] > Sent: Tuesday, March 1, 2016 9:18 AM > Subject: Re: [CMLHope] Re: Hey, what happened to everyone? > > Hi Everyone. > > Sorry to have been so quite but I've been dealing with a lot of crazy health > issues. I've been on Gleevec for 13 years and have had every side effect it > can throw at me and have dealt with it. At the beginning of 2015 I began > having some edema in my legs and I told my GP about and he said it was my > Gleevec. I said okay I talk to my oncologist. I had had swelling before with > the Gleevec but never in my legs and never like this. SO off to the > oncologist and he said I should talk to my kidney doctor as I have Stage 3 > kidney disease. Off to the kidney doctor I went and he said it was the > Gleevec. I said I didn't think it was and told him about all the side effects > I had in the past. Well, that was the end of all the conversations. I would > see the doctors and every time they would tell me how swollen my legs and > feet were but each would point to the other and then to the Gleevec. > > Finally in December 2015, I could no longer stand the pain and my calves were > now 24 inches around so I called my GP and got in to see him right away. I > was sent to a cardiologist and he told me the swelling was not caused by > medications. After a bunch of very expensive tests, he told me it was the > Gleevec and I had to stop it right away. I looked at him like he was nuts and > called my oncologist and told him was said. We agreed that I would stop the > Gleevec for 2 weeks and if the swelling did not improve I would go back on > it. > > After 2 weeks the swelling did not improve I actually got worse and the > oncologist would not put me back on the Gleevec as he believed that it was > now the the medication masking something that was causing the issue. He sent > me to Northwestern to see Dr. Altman. > > After meeting with her and having a tremendous amount of blood drawn and > making appointments with other specialists at Northwestern including a > cardiac oncologist, I feel that I am on the road to getting this problem with > my legs resolved. I am waiting to hear from Dr. Altman to find out what my > BCR-ABL was as well as my WBC, as my white count was climbing since I've been > off the Gleevec. I've seen so many doctors, I feel like I've met every doctor > in the state of Illinois. That is way to many. I'm hopeful that I'll be able > to start my Gleevec today. As for the pain and swelling in my legs, I'll just > live with it until we find out what the heck it is and how to treat it. As of > today, I have been off Gleevec for 2 months and the pain and swelling has not > changed. The pain in my legs is like an electric shock and they feel like > they are on fire. And I do mean fire. Like someone has poured gasoline on > them and lit a match and tossed it on my legs. It's awful. That I know of > Gleevec does not have those side effects, and Dr. Altman did think so either. > > Has anyone here that has taken Gleevec had any side effects like that? > > I hope everyone has a good week and stays well. > > Strength doesn't come from what you can do. It comes from overcoming the > things you thought couldn't. > > L'chaim, > > Sherri > > On Tue, Mar 1, 2016 at 7:16 AM, Norm <[email protected]> wrote: > > I am still alive and kicking but one of my kickers is giving me fits. I think > it is plantar fasciitis. > > I haven't posted in awhile and miss Millie may she rest in peace. > Jeanie is my cruise mentor and my wife and I along with a few other friends > just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, > and Cozumel. > > We were busy with one of my cousin staying here quite often while he was > being treated for stage 4 Melanoma, he passed and is walking with Jesus now. > Way too young and such a very good person. > > My beloved dachshund, Hans, turned 12 yesterday. About a month ago we were > given the devastating news that he has lymphoma. I never knew it would be so > difficult to have to deal with the knowledge that one day, much sooner than > expected, I would have to ease his way to a comfortable ending. > I dread this as he was my buddy and comfort while I was recovering from my > relapse of CML. > He is being spoiled even more than ever now and will be until that time > comes. Millie would understand. > > April 1st will mark 13 years since my diagnosis and the start of Gleevec. > As some know, I relapsed and Gleevec no longer worked. > I was fortunate enough to get in the clinical trial for AMN107 during the > phase 1 study. > As you can tell, it worked but not before I entered blast and was one very > sick puppy. I believe that one night the angel of death came for me and for > some reason let me stay. > All I know is Dr Kantarjian tells me to thank God and I do. > > My son has finished his tour of duty with the USMC and has been discharged as > a Sargent with the Achievement medal. We are extremely proud of our son, and > our daughter who is still teaching photography to high schoolers. > > I have been training my replacements at work so I can eventually retire. I am > ready but they are not.....lol.. > > My macular degeneration is stable and I have not had any shots in my eye for > almost 6 months. Still legally blind and that will not change during my > lifetime I suppose. > > I have been playing a lot of golf with my younger brother and we are having a > great time together. He is a good brother that will come and pick me up and > take me golfing even if it means spending the whole day with me. Life is good. > > This past December marked 11 years that I have been on Tasigna. I have never > been undetectable but it is generally only a few cells in 10 thousand. > > I will try to check in more often but life has been keeping me so busy. > > Blessings to all > Norm > > On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote: > Why the silence? I miss everyone. > 18's, > Marty > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > Marty Gartenberg <[email protected]>: Mar 01 09:40PM -0500 > > Hi Sherri, > > Short and sweet. Even though I had a kidney transplant I still get swollen > feet, ankles and toes. Ask your doctor if he can start you on Furosemide > generic for Lasix 20 mg tabs. By the way this is considered a small dose. > > If he or she will prescribe it then I will guarantee that after two days > (one tiny pill just before bed time) and keep your legs raised on a pillow > or something. > > However you will be peeing probably ever half an hour so it would be > advisable to have some kind of a bed pan handy. If that is not what you > need, spills etc. Then your going to hike to the bathroom probably starting > at about two to four am and then depending on what you drank during the > morning and it should stop in the morning or until you take another dose. > > After those first two days maybe even one day it depends. Get on the scale > in the morning and your going to see a substantial decrease in your legs as > well as a weight drop. Also be sure to limit your salt intake. By the way > you can take it during the day but if you decide to go out then you had > better know where every bathroom is. > > Please let me know what happens. > > 18's > > Marty > > On Tue, Mar 1, 2016 at 9:18 AM, sherri swanson <[email protected]> > wrote: > > Marty Gartenberg <[email protected]>: Mar 01 09:44PM -0500 > > Angie, > > Maybe they should, especially if your having kidney problems. It couldn't > hurt. > > 18's > > Marty > > judy <[email protected]>: Mar 02 04:12AM > > Hello This is Judy I forgot my password s I ave to wait till some one writes > all is good t this end we got about a foot of snow and its beautiful Just > love it. Have been off Gleevec for a few years and stillgoing Good Keeping > up with blood tests because of other things buT all is Good with the counts. > Take care and if you want some snow come and get it HAha JUDY > > On Monday, February 29, 2016 10:00 AM, Marty Gartenberg <[email protected]> > wrote: > > > Why the silence? I miss everyone. > 18's, > Marty-- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > For more options, visit https://groups.google.com/d/optout. > sherri swanson <[email protected]>: Mar 02 03:20AM -0600 > > Hi Marty, > > My doctor put me on Furosemide 20mg & potassium as I have low potassium to > begin with, and at 20mg it did nothing. SO of course, he increased it to > 40mg and still nothing. He switched me to a different drug Spironalactone, > generic for Aldactone and still no trips to the bathroom and the swelling > did not abate. My legs are just stubborn. So that is when all the testing > started and current I am not on any diuretic as none of them have produced > a result. Strange huh? Leave it to me to be difficult. But with all the > other medical issues I have some not so common, the doctors are doing a > bunch of tests with the hopes of find the culprit. > > I have to tell ya, I would welcome a run for the bathroom about now. LOL😁 > Anything to get rid of this excess water. > > As always, your input is most welcome. > > Cheers, > > Sherri > > > On Tue, Mar 1, 2016 at 10:12 PM, 'judy' via CMLHope < > sherri swanson <[email protected]>: Mar 02 03:26AM -0600 > > Hi Angie, > > Thanks for the good wishes. > I haven't heard of anyone with the edema issues I have that are on Gleevec. > I am on a rather high dose at 600mg, and have been since I started. In my > case the doctors blame Gleevec for everything. I had a toe nail that was > falling off from fungus and he told me it was the Gleevec. Sometimes it is > really comical the things I hear that Gleevec causes. > > Stay well, > > Sherri > > > > > On Wed, Mar 2, 2016 at 3:20 AM, sherri swanson <[email protected]> > wrote: > > Back to top > You received this digest because you're subscribed to updates for this group. > You can change your settings on the group membership page. > To unsubscribe from this group and stop receiving emails from it send an > email to [email protected]. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/d/optout.
