Angie, Maybe they should, especially if your having kidney problems. It couldn't hurt.
18's Marty On Tue, Mar 1, 2016 at 9:14 PM, ANGELYN ESDERS <esd...@rogers.com> wrote: > Thanks, Marty. I am monitored by various doctors. No one ever mentioned > Purines to me. No, no gout, thank goodness. > Angie > > ------------------------------ > *From:* Marty Gartenberg <wa2...@gmail.com> > *To:* cmlhope@googlegroups.com > *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 <esd...@rogers.com> 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 <swanson.sherri...@gmail.com> > *To:* cmlhope@googlegroups.com > *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 <norm5...@hotmail.com> 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
