Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 Yes, I have experienced it from time to time. It is very painful to touch the scalp. Matt ville, FL ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 I have something like tha once in a while, in general one side of the scalp, left or right. It is in my case often in conjunction with small ear infections and subsides after a few days. But I had similar symptoms before being on gleevec, even in the last year before dx. I am a scuba diver and it always starts a few hours after being in the ocean or in a pool. Marcos. On 4/20/07, Finsand <chrisfinsand2@...> wrote: > > I'm wondering if anyone else 'out there' ever experiences scalp > sensitivity/pain. Sometimes my scalp is so tender that it hurts to touch or > brush or anything. This symptom, if that's what it is, also seems cyclical > for me, so there are times when I keep my hair really short and that seems > to help not to have the weight on it. > anyone else have anything like this at all or am I nuts, not that that > could necessarily be ruled out, either.... > > chris in Minn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 We, too have Southern Cal Kaiser. We went to City of Hope and saw Dr. Spielberger last year...my husband was hospitalized for 30 days (due to severe neutropenia). he was off Gleevec and at that point, docs were concerned as to why his numbers were not coming up. They referred us to Dr. Spielberger...one of the heads of the bone marrow transplant program over at COH....BMT is one of the last optios for CML these days, but due to what appeared to be 's lack of response to Gleevec, that is why we went and saw him. He is a wealth of knowledge about CML and Gleevec. I would recommend him. Regards Cervera >From: " le Beaubrun " <mrspoiler@...> >Reply- >< > >Subject: [ ] Date: Mon, 20 Aug 2007 08:53:19 -0700 > >To Merissa who has Kaiser Insurance (a network HMO). You should know that >Kaiser in Southern California has a special relationship with the City of >Hope Cancer Center which is a top-notch hospital in Duarte near Los >Angeles. >(One of only 39 fully accredited Comprehensive Cancer Centers in the USA.) >They do all Kaiser's bone marrow transplants and Kaiser is the only HMO >insurance they accept. Your doctor should be able to approve for you to >see >a City of Hope leukemia specialist. The name I heard is best there is Dr. > Snyder. > >le > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 hey @...: evaob365@...: Sat, 22 Mar 2008 11:09:11 -0400Subject: [ ] I don't know what is going on , i am not doing anything different!! Eva__________________________________________________________Express yourself with free Messenger emoticons. Get them today!http://g.msn.ca/ca55/207[Non-text portions of this message have been removed] _________________________________________________________________ Sympatico/MSN Autos wants to put YOU in a 2008 Eclipse! Click here to enter! http://g.msn.ca/ca55/212 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 This one sent [ ] I don't know what is going on , i am not doing anything different!! Eva ____________ _________ _________ _________ _________ _________ _ Express yourself with free Messenger emoticons. Get them today! http://g.msn. ca/ca55/207 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 EVA do you have Skype loaded on the computer!! I had trouble with it. [ ] Hey Sharron , I dont know what is going on . It is doing it again. If I hit reply , type my message and then hit send ..it is an empty box. I dont know why , It was alright . Eva ____________ _________ _________ _________ _________ _________ _ Express yourself with free Messenger emoticons. Get them today! http://g.msn. ca/ca55/207 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Yea I do . Zavie told me where to get it and I just followed the prompts. From: Shipley Sent: Sunday, March 23, 2008 9:12 PM Subject: Re: [ ] EVA do you have Skype loaded on the computer!! I had trouble with it. [ ] Hey Sharron , I dont know what is going on . It is doing it again. If I hit reply , type my message and then hit send ..it is an empty box. I dont know why , It was alright . Eva ____________ _________ _________ _________ _________ _________ _ Express yourself with free Messenger emoticons. Get them today! http://g.msn. ca/ca55/207 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Try first putting Skype on favorites so you can reload. Now remove Skype and see if that was a fix .reload Skype for Tue. If that was your trouble there are fixes that are complicated.It,s easier to load and remove [ ] Hey Sharron , I dont know what is going on . It is doing it again. If I hit reply , type my message and then hit send ..it is an empty box. I dont know why , It was alright . Eva ____________ _________ _________ _________ _________ _________ _ Express yourself with free Messenger emoticons. Get them today! http://g.msn. ca/ca55/207 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Eva, I suffer from similar side effects and my doc has me on 500 mg of loritab 4 times a day. It has it under control and has for a couple of years. I am not going to ever up my dosage or go stronger unless I have to. Terry On Wed, May 14, 2008 at 6:49 PM, Eva <evaob365@...> wrote: > Hi guys. Eva here. I was at the docs today and I have been having a lot > of bone and joint pain. Other than very strong pain medication that I don't > like taking , she put me on Celebrex. It is an anti-inflammatory . She said > she thought it would not interfere with my Gleevec. Has any one any > experience with this. Thanks and God Bless. Eva Brown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Eva, Warm steamy showers, hot tea with honey, and squeezed lemon juice, does the trick and vitamin C, either eat it in your fruits or veggies or take the supplements! Drink plenty of warm or hot teas. If your a pop drinker now is a good time to quit! Stay home, and if you have kids, tell your kids it is not a good time to bring their friends indoor until your feeling better! If you know how to make homemade soups, a hearty beef stew soup with the veggies help. And a good ole pot of homemade chicken soup, does the trick (without eating the meats), good for colds! A warm fire, under warm cozy blankets, and sleep! If you need to take the tickle out of your throat, buy the organic cough drops that has no corn syrups, and they use rice syrup instead. Dory Doggie ________________________________ From: Eva <evaob365@...> < > Sent: Wednesday, October 22, 2008 5:54:34 PM Subject: [ ] I have a terrible head cold and a hacking dry cough, has anyone any suggestions of what I can take for it that won't counteract with the 400 mg of Gleevec I take once a day. Thanks Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Thanks Dory,sounds good!!! Take care ; Eva From: Dory Doggie Sent: Wednesday, October 22, 2008 7:07 PM Subject: Re: [ ] Eva, Warm steamy showers, hot tea with honey, and squeezed lemon juice, does the trick and vitamin C, either eat it in your fruits or veggies or take the supplements! Drink plenty of warm or hot teas. If your a pop drinker now is a good time to quit! Stay home, and if you have kids, tell your kids it is not a good time to bring their friends indoor until your feeling better! If you know how to make homemade soups, a hearty beef stew soup with the veggies help. And a good ole pot of homemade chicken soup, does the trick (without eating the meats), good for colds! A warm fire, under warm cozy blankets, and sleep! If you need to take the tickle out of your throat, buy the organic cough drops that has no corn syrups, and they use rice syrup instead. Dory Doggie ________________________________ From: Eva <evaob365@...> < > Sent: Wednesday, October 22, 2008 5:54:34 PM Subject: [ ] I have a terrible head cold and a hacking dry cough, has anyone any suggestions of what I can take for it that won't counteract with the 400 mg of Gleevec I take once a day. Thanks Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 I know I have chemo brain but didn't hear we aren't supposed to take vitamin C if we are on gleevec? From: Eva <evaob365@...> Subject: Re: [ ] Date: Wednesday, October 22, 2008, 4:26 PM Thanks Dory,sounds good!!! Take care ; Eva From: Dory Doggie Sent: Wednesday, October 22, 2008 7:07 PM groups (DOT) com Subject: Re: [ ] Eva, Warm steamy showers, hot tea with honey, and squeezed lemon juice, does the trick and vitamin C, either eat it in your fruits or veggies or take the supplements! Drink plenty of warm or hot teas. If your a pop drinker now is a good time to quit! Stay home, and if you have kids, tell your kids it is not a good time to bring their friends indoor until your feeling better! If you know how to make homemade soups, a hearty beef stew soup with the veggies help. And a good ole pot of homemade chicken soup, does the trick (without eating the meats), good for colds! A warm fire, under warm cozy blankets, and sleep! If you need to take the tickle out of your throat, buy the organic cough drops that has no corn syrups, and they use rice syrup instead. Dory Doggie ____________ _________ _________ __ From: Eva <evaob365hotmail (DOT) com> <groups (DOT) com> Sent: Wednesday, October 22, 2008 5:54:34 PM Subject: [ ] I have a terrible head cold and a hacking dry cough, has anyone any suggestions of what I can take for it that won't counteract with the 400 mg of Gleevec I take once a day. Thanks Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2008 Report Share Posted December 22, 2008 MELEKALIKIMAKA To all of you!!! And have a wonderful wonderful New Year!!! You all give me strength, knowledge and joy!!! Aloha Sharon _____ From: [mailto: ] On Behalf Of Eva Sent: Monday, December 22, 2008 10:19 AM Subject: [ ] Merry Christmas or Happy Holidays to all may fellow warriors and their family. Best Wishes and God Bless. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2008 Report Share Posted December 22, 2008 Hi Eva, Merry Christmas and a Happy New Year. The result is excellent. You are probably in CCR. I use the value of a 2 log reduction to say that you have achieved this milestone. You are so close. The best confirmation for CCR is a BMB where you have 0/20 CML cells in the test. A couple of more ticks and you join the Zero Club. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Eva Sent: December 22, 2008 1:18 PM Subject: [ ] hi, I had a Blood test on Aug 30 and my results were a -1.07 log reduction . My new results as of a test done on Nov. 20 are -1.87. My doc is on holidays and her nurse says there is no one to interpret the results . Can you guys tell me is this good or bad ??? Thank you, Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2008 Report Share Posted December 22, 2008 Same to you, Eva -- and to all. From: evaob365@... Date: Mon, 22 Dec 2008 13:18:36 -0500 Subject: [ ] Merry Christmas or Happy Holidays to all may fellow warriors and their family. Best Wishes and God Bless. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 I have been off Gleevec since Feb 19th. I got a message when I got home from work today that I have an appt with a liver specialist on May 11 and an appt, with the leukemia specialist, Dr. Lipton at Princess Margaret on May 13th. I asked about getting anew onc and was told it would take months and they all follow the same protocol. I just don't know anymore. My husband wants to burn the place down...LOL. It is so frustrating. Thanks for your input. Eva From: franklin Sent: Monday, April 20, 2009 2:00 PM Subject: Re: [ ] Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 Hi Eva, When you see Dr. Lipton, see if he can become your CML doctor. He is probably the top CML doctor in the country ... and you deserve the best. If they all followed the same protocol, many of us would not be here today. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Eva Sent: April-20-09 5:11 PM Subject: Re: [ ] I have been off Gleevec since Feb 19th. I got a message when I got home from work today that I have an appt with a liver specialist on May 11 and an appt, with the leukemia specialist, Dr. Lipton at Princess Margaret on May 13th. I asked about getting anew onc and was told it would take months and they all follow the same protocol. I just don't know anymore. My husband wants to burn the place down...LOL. It is so frustrating. Thanks for your input. Eva From: franklin Sent: Monday, April 20, 2009 2:00 PM groups (DOT) <mailto:%40> com Subject: Re: [ ] Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Thanks Zavie, that is what I am hoping for. Eva From: Zavie Sent: Monday, April 20, 2009 6:29 PM Subject: RE: [ ] Hi Eva, When you see Dr. Lipton, see if he can become your CML doctor. He is probably the top CML doctor in the country ... and you deserve the best. If they all followed the same protocol, many of us would not be here today. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Eva Sent: April-20-09 5:11 PM Subject: Re: [ ] I have been off Gleevec since Feb 19th. I got a message when I got home from work today that I have an appt with a liver specialist on May 11 and an appt, with the leukemia specialist, Dr. Lipton at Princess Margaret on May 13th. I asked about getting anew onc and was told it would take months and they all follow the same protocol. I just don't know anymore. My husband wants to burn the place down...LOL. It is so frustrating. Thanks for your input. Eva From: franklin Sent: Monday, April 20, 2009 2:00 PM groups (DOT) <mailto:%40> com Subject: Re: [ ] Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Hi Eva I am so sorry about your problem with the liver. I am having that problem with Nilotinib. I have been on and off Nilotinib due to my liver acting up. I just went back on 200mg of nilotinib this week, after about three weeks off. I am not sure where we are heading with treatment now, I was pretty sick for about two weeks, received lots antibotic's via IV every day.  I hope you start to feel better now, are they taking blood tests every week to test your liver?, they are with me. Be Safe and get well soon. SkipD DX'ed 30++++ years ago From: Eva <evaob365@...> Subject: Re: [ ] Received: Monday, April 20, 2009, 8:42 PM Thanks Zavie, that is what I am hoping for. Eva From: Zavie Sent: Monday, April 20, 2009 6:29 PM groups (DOT) com Subject: RE: [ ] Hi Eva, When you see Dr. Lipton, see if he can become your CML doctor. He is probably the top CML doctor in the country ... and you deserve the best. If they all followed the same protocol, many of us would not be here today. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmillersympatico (DOT) ca Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Eva Sent: April-20-09 5:11 PM groups (DOT) com Subject: Re: [ ] I have been off Gleevec since Feb 19th. I got a message when I got home from work today that I have an appt with a liver specialist on May 11 and an appt, with the leukemia specialist, Dr. Lipton at Princess Margaret on May 13th. I asked about getting anew onc and was told it would take months and they all follow the same protocol. I just don't know anymore. My husband wants to burn the place down...LOL. It is so frustrating. Thanks for your input. Eva From: franklin Sent: Monday, April 20, 2009 2:00 PM groups (DOT) <mailto:% 40groups. com> com Subject: Re: [ ] Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 I had blood work on April the 1st and I go for testing and to see my onc again on April 29th. Thanks; Eva XXOO From: Skip Duffie Sent: Tuesday, April 21, 2009 7:16 AM Subject: Re: [ ] Hi Eva I am so sorry about your problem with the liver. I am having that problem with Nilotinib. I have been on and off Nilotinib due to my liver acting up. I just went back on 200mg of nilotinib this week, after about three weeks off. I am not sure where we are heading with treatment now, I was pretty sick for about two weeks, received lots antibotic's via IV every day. I hope you start to feel better now, are they taking blood tests every week to test your liver?, they are with me. Be Safe and get well soon. SkipD DX'ed 30++++ years ago From: Eva <evaob365@...> Subject: Re: [ ] Received: Monday, April 20, 2009, 8:42 PM Thanks Zavie, that is what I am hoping for. Eva From: Zavie Sent: Monday, April 20, 2009 6:29 PM groups (DOT) com Subject: RE: [ ] Hi Eva, When you see Dr. Lipton, see if he can become your CML doctor. He is probably the top CML doctor in the country ... and you deserve the best. If they all followed the same protocol, many of us would not be here today. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmillersympatico (DOT) ca Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Eva Sent: April-20-09 5:11 PM groups (DOT) com Subject: Re: [ ] I have been off Gleevec since Feb 19th. I got a message when I got home from work today that I have an appt with a liver specialist on May 11 and an appt, with the leukemia specialist, Dr. Lipton at Princess Margaret on May 13th. I asked about getting anew onc and was told it would take months and they all follow the same protocol. I just don't know anymore. My husband wants to burn the place down...LOL. It is so frustrating. Thanks for your input. Eva From: franklin Sent: Monday, April 20, 2009 2:00 PM groups (DOT) <mailto:% 40groups. com> com Subject: Re: [ ] Dear Eva, You have had a problem with this since about March17. Did you read my previous post to you? You have a REAL problem! Have you been off Gleevec since March? CML specialists and liver specialists know that you can be put on prednisone along with the gleevec. Yes, you probably do have drug induced hepatitis. You should have been put on prednisone to take the inflamation out of your liver. This doctor is taking WAY TOO LONG to do these tests. When this happened to me I left my original oncologist because he was being just too slow about treatment. You probably will need a liver biopsy to determine what drug is causing the inflamation and most specialists don't even like to do that because it is risky. Do you understand what I am saying? Get yourself to a new doc! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Dear Eva , Sorry if I seemed upset, but I hate to see you have to wait for some help. It is most likely the drug causing the problem so there should be no long term problems after the inflamation is gone. I did not have a diseased liver; it was secondary to taking gleevec. Just so you know, I now take Tylenol and have occasional glasses of wine. Cheers! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Thanks Lynn, anyone that gets upset on my behalf ...is OK with me. Just trying to remain positive, which I am a terrible pessimist so it is a stretch for me. Thanks Eva XXOO From: franklin Sent: Tuesday, April 21, 2009 8:51 AM Subject: Re: [ ] Dear Eva , Sorry if I seemed upset, but I hate to see you have to wait for some help. It is most likely the drug causing the problem so there should be no long term problems after the inflamation is gone. I did not have a diseased liver; it was secondary to taking gleevec. Just so you know, I now take Tylenol and have occasional glasses of wine. Cheers! Lynn F. [ ] Hi Guys. Have not posted in awhile. My AST is up over 740 now , I am still having my Gleevec withheld. My appt on Friday I was sent for more blood work than usual . She said she was testing me for Hepatitis. Can I get that from the Gleevec??. I read on line it can be drug induced. Have to wait for the results. I am still working but I spend the rest of my time in bed. Very sore back and side plus a lot of bone and muscle pain. Take care. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 Great great news!!! Sprycel isn't so bad, but i don't have anything to compare it to. Reminds us all to be good to our liver and kidneys! Peace, Rhonda Sent from my Verizon Wireless BlackBerry [ ] Hi guys, had an doctors appt. today. My wbc-9.8 my Neutrophils 4.0 my ast-55 down from over 700 my bilirubin is 6 down from 16. I have breathed such a sigh of relief . She said she thinks the signs of Hep were just a " red herring " ??? I still see the liver specialist on the 11th and Dr. Lipton on the 13th . She said he will probably switch me to Sprycel .We will have a long discussion on that one. Thanks for all your advice and prayers and advice. Luv Eva XXOO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 You can say that again!!! Eva From: Sionito@... Sent: Wednesday, April 29, 2009 8:33 PM Subject: Re: [ ] Great great news!!! Sprycel isn't so bad, but i don't have anything to compare it to. Reminds us all to be good to our liver and kidneys! Peace, Rhonda Sent from my Verizon Wireless BlackBerry [ ] Hi guys, had an doctors appt. today. My wbc-9.8 my Neutrophils 4.0 my ast-55 down from over 700 my bilirubin is 6 down from 16. I have breathed such a sigh of relief . She said she thinks the signs of Hep were just a " red herring " ??? I still see the liver specialist on the 11th and Dr. Lipton on the 13th . She said he will probably switch me to Sprycel .We will have a long discussion on that one. Thanks for all your advice and prayers and advice. Luv Eva XXOO Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.