Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Hi everyone,just wanted to tell you , I am temporarily off Ariad. I have several problems,not all to do with cml, and Ariad. But mainly I have been short of breath,similar to pleural effusion. I am getting a chest Xray tomorrow. Also I am bone weary, honest to goodness fatigued like I have never been. When I do something as simple as load the washer, I have to stop and rest. Never felt this before. tomorrow is Xray,lab work, an ekg, a cat scan. The scan is to see if I have diverticulitis. Have also had a lot of problems with acid reflux. I have been so long with no problems, I am very spoiled, I was on sprycel for 1 1/2 years with no side effects, then got pleural effusion. So although I have had no side effects on Ariad for almost 2 years, I have always had my fingers crossed, and seemed to be waiting for something. Hopefully none of what is wrong is from Ariad, but we will know soon. Have a great day, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Bobby hang in there hope all tests turns ok T Sent from my Verizon Wireless BlackBerry [ ] Ariad Hi everyone,just wanted to tell you , I am temporarily off Ariad. I have several problems,not all to do with cml, and Ariad. But mainly I have been short of breath,similar to pleural effusion. I am getting a chest Xray tomorrow. Also I am bone weary, honest to goodness fatigued like I have never been. When I do something as simple as load the washer, I have to stop and rest. Never felt this before. tomorrow is Xray,lab work, an ekg, a cat scan. The scan is to see if I have diverticulitis. Have also had a lot of problems with acid reflux. I have been so long with no problems, I am very spoiled, I was on sprycel for 1 1/2 years with no side effects, then got pleural effusion. So although I have had no side effects on Ariad for almost 2 years, I have always had my fingers crossed, and seemed to be waiting for something. Hopefully none of what is wrong is from Ariad, but we will know soon. Have a great day, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Hi Bobby: Hope this is not from the ARIAD, because you have been doing so well and been a great example of what these new drugs can do. IT could just be things that we get as we age. I did develop the Reflux disease from my Gleevec. I was diagnosed with Diverticulosis, and was told if I had Divertculitis I would know it due to all the pain in the stomach. I pray all is okay. A. From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ariad " " < > Date: Wednesday, January 12, 2011, 4:48 PM  Hi everyone,just wanted to tell you , I am temporarily off Ariad. I have several problems,not all to do with cml, and Ariad. But mainly I have been short of breath,similar to pleural effusion. I am getting a chest Xray tomorrow. Also I am bone weary, honest to goodness fatigued like I have never been. When I do something as simple as load the washer, I have to stop and rest. Never felt this before. tomorrow is Xray,lab work, an ekg, a cat scan. The scan is to see if I have diverticulitis. Have also had a lot of problems with acid reflux. I have been so long with no problems, I am very spoiled, I was on sprycel for 1 1/2 years with no side effects, then got pleural effusion. So although I have had no side effects on Ariad for almost 2 years, I have always had my fingers crossed, and seemed to be waiting for something. Hopefully none of what is wrong is from Ariad, but we will know soon. Have a great day, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Hi Bobby, Keeping you in my thoughts for more energy and a simple (ha) resolution to all this " junk " Leah > > Hi everyone,just wanted to tell you , I am temporarily off Ariad. I have several problems,not all to do with cml, and Ariad. But mainly I have been short of breath,similar to pleural effusion. I am getting a chest Xray tomorrow. Also I am bone weary, honest to goodness fatigued like I have never been. When I do something as simple as load the washer, I have to stop and rest. Never felt this before. tomorrow is Xray,lab work, an ekg, a cat scan. The scan is to see if I have diverticulitis. Have also had a lot of problems with acid reflux. I have been so long with no problems, I am very spoiled, > I was on sprycel for 1 1/2 years with no side effects, then got pleural effusion. So although I have had no side effects on Ariad for almost 2 years, I have always had my fingers crossed, and seemed to be waiting for something. Hopefully none of what is wrong is from > Ariad, but we will know soon. Have a great day, Bobby > a ( Bobby ) Doyle, dob 12/17/29 > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.01 > 11/2009 PCR 0.034 > 02/2010 PCRU > #840 Zavie's Zero Club > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Thanks Leah and everyone else who sent good thoughts. I'm getting a cat scan tomorrow for the lower abdomen and Dr. Talpaz also added an upper scan too, to check the heart. Ekg was good, labs are good, BP was good, so we'll see what the scan shows. Will keep you posted, sure hope it isn't Ariad that's the culprit, Bobby On Thu, Jan 13, 2011 at 11:45 AM, leahpeer <leahpeer@...> wrote: > > > > Hi Bobby, > Keeping you in my thoughts for more energy and a simple (ha) resolution to > all this " junk " > > Leah > > > > > > Hi everyone,just wanted to tell you , I am temporarily off Ariad. I have > several problems,not all to do with cml, and Ariad. But mainly I have been > short of breath,similar to pleural effusion. I am getting a chest Xray > tomorrow. Also I am bone weary, honest to goodness fatigued like I have > never been. When I do something as simple as load the washer, I have to > stop and rest. Never felt this before. tomorrow is Xray,lab work, an ekg, > a cat scan. The scan is to see if I have diverticulitis. Have also had a > lot of problems with acid reflux. I have been so long with no problems, I > am very spoiled, > > I was on sprycel for 1 1/2 years with no side effects, then got pleural > effusion. So although I have had no side effects on Ariad for almost 2 > years, I have always had my fingers crossed, and seemed to be waiting for > something. Hopefully none of what is wrong is from > > Ariad, but we will know soon. Have a great day, Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > > DX 5/1995 > > Interferon 9 weeks/Hydroxyurea 5 years > > 02/2000 to 06/2002 Gleevec trial, OHSU > > 06/2002 Gleevec/Trisenox Trial, OHSU > > 06/2003 Gleevec/Zarnestra Trial, OHSU > > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > > 04/2008 XL228 Trial, U of Mich. > > 01/2009 PCR 5.69 > > 04/2009 Ariad Trial AP24534 > > 09/2009 PCR 0.01 > > 11/2009 PCR 0.034 > > 02/2010 PCRU > > #840 Zavie's Zero Club > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Lottie, good luck on the re-start! Fingers crossed the drug does its job without getting rid of your platelets!! BethG [ ] Ariad  Dear , Yes, I re-started Ariad yesterday, on a smaller dose. I hope it plays a lesser role in depleting my platelets. There is nothing like having a doctor you have confidence in and who really understands every aspect of your disease. Unfortunately, there are not enough oncologists who fall into that category and according to the stats, we will have a shortage of oncologists in the thousands in the very near future. If you look at journals and even your bill, when it is broken down, they are mostly foreign doctors. What would we have done if they had decided to go elsewhere? We are not utilizing our great minds, probably for the debt that is incurred going to medical school. The foreign students probably had scholarships, and decided to stay on because the salaries in other countries are sometimes a deciding factor in making their decision to stay here. I believe there is a law that allows foreign doctors to stay here if they agree to practice in a town where there are no specialists in their field, but I believe they have found a loophole. We must have some lawyers who can expound on the federal laws and if this is correct. FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Hi Lottie: So glad you got to start ARIAD again. Your a real trooper in anything you do. I pray it works well for you, and you do not have anymore problems along the way. From: Lottie Duthu <lotajam@...> Subject: [ ] Ariad " CML " < > Date: Friday, February 25, 2011, 12:33 AM  Dear , Yes, I re-started Ariad yesterday, on a smaller dose. I hope it plays a lesser role in depleting my platelets. There is nothing like having a doctor you have confidence in and who really understands every aspect of your disease. Unfortunately, there are not enough oncologists who fall into that category and according to the stats, we will have a shortage of oncologists in the thousands in the very near future. If you look at journals and even your bill, when it is broken down, they are mostly foreign doctors. What would we have done if they had decided to go elsewhere? We are not utilizing our great minds, probably for the debt that is incurred going to medical school. The foreign students probably had scholarships, and decided to stay on because the salaries in other countries are sometimes a deciding factor in making their decision to stay here. I believe there is a law that allows foreign doctors to stay here if they agree to practice in a town where there are no specialists in their field, but I believe they have found a loophole. We must have some lawyers who can expound on the federal laws and if this is correct. FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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