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. -- -- [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.
