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.
