Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hello Ursula and everyone, I am posting a message I sent to one of our member’s last month regarding some experiences I have been going through. I feel this maybe related to just us women due to the issues at hand. I have not yet sent this to Dr Druker because I am scared to waste his valuable time but I really feel that these drugs we are using for CML may be causing us to be pushed into menopause at earlier ages than we would anticipate. This is very long but hopefully worth the read for those of you who are interested. My problem which I have addressed on the forum and with all of my doctors is one that I don’t think anyone has really addressed but I strongly believe it should be. I have been on Gleevec 400 mgs for over 6 ½ years now. CCR & PCRU after only 60 days of treatment with Gleevec. Side affects have subsided over the years and I have adhered to the new way of living what is a normal life to me. However’ it wasn’t until after starting Gleevec that I started having severe night sweats the week prior to my menstrual cycle. Water retention has always been way worse during that time as well. PMS has just gotten worse and worse and we women on the list have discussed this issue many times. Comparing notes from others it seems we pretty much are enduring the same symptoms and we’re not all in that pre-menopausal age. I’ve chosen to consider only the ages ranging from early 20’s to late 40’s just to rule out the pre-menopausal theory. (Although I have kept the notes from women of all ages too) The last year has been getting harder and harder for me. And the last few months being the worst. I have had 3 surgeries for cysts on my ovaries and my ONC, my OBGYN and my Regular PC Dr. have all tested my hormones every year for the last 3 years. Each time they are higher than they should be for my age. I started Gleevec at age 36 and I am now 42 ½. I have recently entered a period in my life where I have become so emotional. It starts early in the morning and through out the day it’s just like a rollercoaster ride with anxiety, anger, severe depression etc. It’s pretty much a week of severe PMS packed in one day, every day. Not just during my cycle. I stopped Gleevec on my own the evening before Thanksgiving to see if there is any difference. The symptoms have declined a bit but my Dr has also increased my anxiety drug dosage as well. I started back on my Gleevec last night after my family pressured me. But I seriously think that Gleevec may have been having an impact on my hormones. I have heard rumors that Chemo can make you start menopause early but I also heard that Hormone therapy can cause cancer and I don’t want a secondary. I haven’t posted this to the group but I plan on e-mailing Dr Druker for advice because I cannot live like I have been and I don’t know what to do regarding the hormone replacement therapy? I’ve been considering switching CML drugs to see if that would help but I think its time someone brought this issue to Dr Drukers attention as I know we have had so many discussions on the board about it but everyone of us have just pretty much shrugged it off. The Dr’s have as well….but I cannot do it any more. I need help because there are literally times that I feel like I am loosing my mind and I’m ready to check into or out of somewhere. I went through my periods of depression initially and being the positive person I have always been, I have made it through so much. Including the loss of one of one of my son’s 5 years ago. You never get over that but you do get through it one day at a time. Lately I‘m lucky if I can make it through a morning without breaking down and sometimes I HAVE NO CLUE WHY? I have no clue how I make it through a days at work. My concern here is after so many years, could this be one of the long term affects that gleevec and the other class of drugs may be having on us? Added Note 2-8-08 : My last surgery was 11-28-07 I had one normal month where I was feeling great. January 2008 my abnormal bleeding has started again. Some of the other things have subsided-Depression etc. Surgery again? I don’t think so… My theory is that my high hormone count is causing too much ovulation which in turn is causing cyst that is causing me to bleed abnormally. Can I get a Dr. to agree with this? Not yet… and lately my night sweats have been consistent as oppose to the week prior to when my cycle is suppose to begin. ez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 I will agree with this post. I was told by my oncologist once I started Gleevec I would begin menopause and at the 4 month mark in Dec. '04 I had. I still get night sweats periodically and will heat up like a little heater even with one finger contact in the night. I am currently on Sprycel, although I still have aches and pain, it is nothing like when I was on Gleevec. Prayers to everyone. Hello Ursula and everyone, I am posting a message I sent to one of our member’s last month regarding some experiences I have been going through. I feel this maybe related to just us women due to the issues at hand. I have not yet sent this to Dr Druker because I am scared to waste his valuable time but I really feel that these drugs we are using for CML may be causing us to be pushed into menopause at earlier ages than we would anticipate. This is very long but hopefully worth the read for those of you who are interested. My problem which I have addressed on the forum and with all of my doctors is one that I don’t think anyone has really addressed but I strongly believe it should be. I have been on Gleevec 400 mgs for over 6 ½ years now. CCR & PCRU after only 60 days of treatment with Gleevec. Side affects have subsided over the years and I have adhered to the new way of living what is a normal life to me. However’ it wasn’t until after starting Gleevec that I started having severe night sweats the week prior to my menstrual cycle. Water retention has always been way worse during that time as well. PMS has just gotten worse and worse and we women on the list have discussed this issue many times. Comparing notes from others it seems we pretty much are enduring the same symptoms and we’re not all in that pre-menopausal age. I’ve chosen to consider only the ages ranging from early 20’s to late 40’s just to rule out the pre-menopausal theory. (Although I have kept the notes from women of all ages too) The last year has been getting harder and harder for me. And the last few months being the worst. I have had 3 surgeries for cysts on my ovaries and my ONC, my OBGYN and my Regular PC Dr. have all tested my hormones every year for the last 3 years. Each time they are higher than they should be for my age. I started Gleevec at age 36 and I am now 42 ½. I have recently entered a period in my life where I have become so emotional. It starts early in the morning and through out the day it’s just like a rollercoaster ride with anxiety, anger, severe depression etc. It’s pretty much a week of severe PMS packed in one day, every day. Not just during my cycle. I stopped Gleevec on my own the evening before Thanksgiving to see if there is any difference. The symptoms have declined a bit but my Dr has also increased my anxiety drug dosage as well. I started back on my Gleevec last night after my family pressured me. But I seriously think that Gleevec may have been having an impact on my hormones. I have heard rumors that Chemo can make you start menopause early but I also heard that Hormone therapy can cause cancer and I don’t want a secondary. I haven’t posted this to the group but I plan on e-mailing Dr Druker for advice because I cannot live like I have been and I don’t know what to do regarding the hormone replacement therapy? I’ve been considering switching CML drugs to see if that would help but I think its time someone brought this issue to Dr Drukers attention as I know we have had so many discussions on the board about it but everyone of us have just pretty much shrugged it off. The Dr’s have as well….but I cannot do it any more. I need help because there are literally times that I feel like I am loosing my mind and I’m ready to check into or out of somewhere. I went through my periods of depression initially and being the positive person I have always been, I have made it through so much. Including the loss of one of one of my son’s 5 years ago. You never get over that but you do get through it one day at a time. Lately I‘m lucky if I can make it through a morning without breaking down and sometimes I HAVE NO CLUE WHY? I have no clue how I make it through a days at work. My concern here is after so many years, could this be one of the long term affects that gleevec and the other class of drugs may be having on us? Added Note 2-8-08 : My last surgery was 11-28-07 I had one normal month where I was feeling great. January 2008 my abnormal bleeding has started again. Some of the other things have subsided-Depression etc. Surgery again? I don’t think so… My theory is that my high hormone count is causing too much ovulation which in turn is causing cyst that is causing me to bleed abnormally. Can I get a Dr. to agree with this? Not yet… and lately my night sweats have been consistent as oppose to the week prior to when my cycle is suppose to begin. ez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hi , I'm not sure why your oncologist told you that once you start taking Gleevec that you'd begin menopause because it seems that the majority of us have had the exact opposite experience. We actually get hormone surges and despite years of Gleevec, still haven't started menopause. , my experiences have been very similar to yours. The only exception is that while I also get the cysts, they don't cause any bleeding and they don't seem to be any problem for me. The type that I get are called corpus luteum cysts and they go away on their own. The annoying hormone that I seem to have surging on and off is prolactin. I did email Dr. Druker about this years ago and he told me that he was unaware of any hormonal issues that could be caused by Gleevec. I had every test done that could possibly explain the prolactin and nothing was ever found so I don't know what to think about it. Like you, I'm also getting more and more sweating at night as I start my 6th year of Gleevec. It used to only happen the week before my period, but now it's starting to happen much more regularly and at any time of the month. The emotional issues that you describe are very new to me but sadly, I must admit that I'm experiencing them too (which I never had to deal with before and I'm not sure what to think of them either). Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I was actually told that by several specialists - it could have been related maybe to my age as I was in my forties when diagnosed. I am not overly concerned as I am just thankful and very grateful that I am graced with one more day each day. Emotionally I have been fortunate too as it has not effected but an occassional unexpected melt-down. Tracey <traceyincanada@...> wrote: Hi , I'm not sure why your oncologist told you that once you start taking Gleevec that you'd begin menopause because it seems that the majority of us have had the exact opposite experience. We actually get hormone surges and despite years of Gleevec, still haven't started menopause. , my experiences have been very similar to yours. The only exception is that while I also get the cysts, they don't cause any bleeding and they don't seem to be any problem for me. The type that I get are called corpus luteum cysts and they go away on their own. The annoying hormone that I seem to have surging on and off is prolactin. I did email Dr. Druker about this years ago and he told me that he was unaware of any hormonal issues that could be caused by Gleevec. I had every test done that could possibly explain the prolactin and nothing was ever found so I don't know what to think about it. Like you, I'm also getting more and more sweating at night as I start my 6th year of Gleevec. It used to only happen the week before my period, but now it's starting to happen much more regularly and at any time of the month. The emotional issues that you describe are very new to me but sadly, I must admit that I'm experiencing them too (which I never had to deal with before and I'm not sure what to think of them either). Tracey --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Tracey, Can you walk us through your Gleevec dosage levels over the past 6 years? My onc is looking at reducing my Gleevec from 5oo mg daily to 400 mg daily (am in cytogenic remission, but not molecular remission yet). Was initially on 400 mg, then went to 600 mg for three months, then down to 500 mgs - all this in the past year or so. Regards. Wayne --- Tracey <traceyincanada@...> wrote: > Hi , > > I'm not sure why your oncologist told you that once > you start taking > Gleevec that you'd begin menopause because it seems > that the majority > of us have had the exact opposite experience. We > actually get > hormone surges and despite years of Gleevec, still > haven't started > menopause. > > , my experiences have been very similar to > yours. The only > exception is that while I also get the cysts, they > don't cause any > bleeding and they don't seem to be any problem for > me. The type that > I get are called corpus luteum cysts and they go > away on their own. > > The annoying hormone that I seem to have surging on > and off is > prolactin. I did email Dr. Druker about this years > ago and he told > me that he was unaware of any hormonal issues that > could be caused by > Gleevec. I had every test done that could possibly > explain the > prolactin and nothing was ever found so I don't know > what to think > about it. > > Like you, I'm also getting more and more sweating at > night as I start > my 6th year of Gleevec. It used to only happen the > week before my > period, but now it's starting to happen much more > regularly and at > any time of the month. > > The emotional issues that you describe are very new > to me but sadly, > I must admit that I'm experiencing them too (which I > never had to > deal with before and I'm not sure what to think of > them either). > > Tracey > > > > > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Hi Wayne, There isn't much to walk through. I've been on 400mg the entire 6 years and I've been fortunate to have achieved a 3+ log reduction on this dose. Good luck to you, Tracey > > > Hi , > > > > I'm not sure why your oncologist told you that once > > you start taking > > Gleevec that you'd begin menopause because it seems > > that the majority > > of us have had the exact opposite experience. We > > actually get > > hormone surges and despite years of Gleevec, still > > haven't started > > menopause. > > > > , my experiences have been very similar to > > yours. The only > > exception is that while I also get the cysts, they > > don't cause any > > bleeding and they don't seem to be any problem for > > me. The type that > > I get are called corpus luteum cysts and they go > > away on their own. > > > > The annoying hormone that I seem to have surging on > > and off is > > prolactin. I did email Dr. Druker about this years > > ago and he told > > me that he was unaware of any hormonal issues that > > could be caused by > > Gleevec. I had every test done that could possibly > > explain the > > prolactin and nothing was ever found so I don't know > > what to think > > about it. > > > > Like you, I'm also getting more and more sweating at > > night as I start > > my 6th year of Gleevec. It used to only happen the > > week before my > > period, but now it's starting to happen much more > > regularly and at > > any time of the month. > > > > The emotional issues that you describe are very new > > to me but sadly, > > I must admit that I'm experiencing them too (which I > > never had to > > deal with before and I'm not sure what to think of > > them either). > > > > Tracey > > > > > > > > > > > > > > > > ______________________________________________________________________ ______________ > Looking for last minute shopping deals? > Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 I am having the same night and day sweats. I feel this big ol flush of hot engery rising and its very uncomfortable. I can be sitting at a dinner party and experience one of these episodes. Everyone will look at me and ask why I am sweating. It is embrassing because I always feel sweaty and hot. I am only 28 and have been on gleevec for about eight months now. I did ask my doctor about it but no answer due to no study on the matter. I have also read somewhere that chemo will put ladies in menopause early but I wonder if chemo pills have the same affect. I also feel the same about replacement therapy. I do not need another cancer. If you do ask Dr. Duker about the matter please post any comments. I would greatly appreciate some answers. Thanks Corina -- In , " ez " <lmartinez@...> wrote: > > Hello Ursula and everyone, > > I am posting a message I sent to one of our member's last month regarding > some experiences I have been going through. I feel this maybe related to > just us women due to the issues at hand. > > I have not yet sent this to Dr Druker because I am scared to waste his > valuable time but I really feel that these drugs we are using for CML may be > causing us to be pushed into menopause at earlier ages than we would > anticipate. > > This is very long but hopefully worth the read for those of you who are > interested. > > > > My problem which I have addressed on the forum and with all of my doctors > is one that I don't think anyone has really addressed but I strongly believe > it should be. > > I have been on Gleevec 400 mgs for over 6 ½ years now. CCR & PCRU after only > 60 days of treatment with Gleevec. > > Side affects have subsided over the years and I have adhered to the new way > of living what is a normal life to me. > > However' it wasn't until after starting Gleevec that I started having severe > night sweats the week prior to my menstrual cycle. Water retention has > always been way worse during that time as well. PMS has just gotten worse > and worse and we women on the list have discussed this issue many times. > > Comparing notes from others it seems we pretty much are enduring the same > symptoms and we're not all in that pre-menopausal age. I've chosen to > consider only the ages ranging from early 20's to late 40's just to rule out > the pre-menopausal theory. (Although I have kept the notes from women of all > ages too) > > The last year has been getting harder and harder for me. And the last few > months being the worst. > > I have had 3 surgeries for cysts on my ovaries and my ONC, my OBGYN and my > Regular PC Dr. have all tested my hormones every year for the last 3 years. > Each time they are higher than they should be for my age. > > I started Gleevec at age 36 and I am now 42 ½. I have recently entered a > period in my life where I have become so emotional. It starts early in the > morning and through out the day it's just like a rollercoaster ride with > anxiety, anger, severe depression etc. It's pretty much a week of severe PMS > packed in one day, every day. Not just during my cycle. > > > I stopped Gleevec on my own the evening before Thanksgiving to see if there > is any difference. The symptoms have declined a bit but my Dr has also > increased my anxiety drug dosage as well. I started back on my Gleevec last > night after my family pressured me. But I seriously think that Gleevec may > have been having an impact on my hormones. > > I have heard rumors that Chemo can make you start menopause early but I also > heard that Hormone therapy can cause cancer and I don't want a secondary. > I haven't posted this to the group but I plan on e-mailing Dr Druker for > advice because I cannot live like I have been and I don't know what to do > regarding the hormone replacement therapy? > > I've been considering switching CML drugs to see if that would help but I > think its time someone brought this issue to Dr Drukers attention as I know > we have had so many discussions on the board about it but everyone of us > have just pretty much shrugged it off. The Dr's have as well….but I cannot > do it any more. I need help because there are literally times that I feel > like I am loosing my mind and I'm ready to check into or out of somewhere. > > I went through my periods of depression initially and being the positive > person I have always been, I have made it through so much. Including the > loss of one of one of my son's 5 years ago. You never get over that but you > do get through it one day at a time. Lately I`m lucky if I can make it > through a morning without breaking down and sometimes I HAVE NO CLUE WHY? I > have no clue how I make it through a days at work. > > > My concern here is after so many years, could this be one of the long term > affects that gleevec and the other class of drugs may be having on us? > > Added Note 2-8-08 : My last surgery was 11-28-07 I had one normal month > where I was feeling great. January 2008 my abnormal bleeding has started > again. Some of the other things have subsided-Depression etc. > > Surgery again? I don't think so… My theory is that my high hormone count is > causing too much ovulation which in turn is causing cyst that is causing me > to bleed abnormally. Can I get a Dr. to agree with this? Not yet… and lately > my night sweats have been consistent as oppose to the week prior to when my > cycle is suppose to begin. > > > > > > ez > > > > > > Quote Link to comment Share on other sites More sharing options...
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