Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Lottie speaks for us all on that count, Skip! From: lotajam@... Date: Sun, 9 Nov 2008 02:32:13 -0600 Subject: [ ] Skip's hospital saga Dear Skip, I know everyone in this group is very sorry that you have had to be hospitalized again. Not anything one looks forward to, but was certainly warranted in your case. Thoracentesis is probably what they did for you while you were in the hospital. Let's hope and pray that changing your meds will bring you blessed relief. It's amazing that you bounce back and claim that it not all that uncomfortable. There are many people who are lifting you up in prayer, wishing you a quick recovery. http://www.thoracic.org/sections/clinical-information/critical-care/patient-info\ rmation/icu-devices-and-procedures/thoracentesis-taking-a-sample-of-fluid-from-a\ round-the-lungs.html Sending you prayers and blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Thanks so much, I will be seeing the doc next week and will know what is the next stage. I only hope that the tinkering with me, will result in better treatment to long time survivors of CML. As far as we know, I am the longest or one of the longest survivors and it is a chance for the docs to see what lies in store for some long time survivors of Gleevec or Nilotinib or Dasatinib. The pleural effusion that I experienced is a known side effect of Dasatinib, so maybe a lower dose or even back on Nilotinib we shall see. If what I am doing or allowing to happen helps even one person than I think its well worth it. Thanks all for your prayers and well wishes. SkipD dx'ed 30++++ years ago From: Rosen Lum <rrosenlum@...> Subject: RE: [ ] Skip's hospital saga Date: Sunday, November 9, 2008, 1:40 PM Lottie speaks for us all on that count, Skip! groups (DOT) com From: lotajamcomcast (DOT) net Date: Sun, 9 Nov 2008 02:32:13 -0600 Subject: [ ] Skip's hospital saga Dear Skip, I know everyone in this group is very sorry that you have had to be hospitalized again. Not anything one looks forward to, but was certainly warranted in your case. Thoracentesis is probably what they did for you while you were in the hospital. Let's hope and pray that changing your meds will bring you blessed relief. It's amazing that you bounce back and claim that it not all that uncomfortable. There are many people who are lifting you up in prayer, wishing you a quick recovery. http://www.thoracic .org/sections/ clinical- information/ critical- care/patient- information/ icu-devices- and-procedures/ thoracentesis- taking-a- sample-of- fluid-from- around-the- lungs.html Sending you prayers and blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Hi Skip, I had to have a thoracentesis done when I was on Sprycel and it was the procedure from hell. I didn't pay attention to how much it cost when the invoices came in, but all the Dr. did was insert the needle and left the room, with two nurses left to finish up. I could not take the pain and made them stop, leaving a bit of fluid there, that took over a year to get rid of. Everyone tells me it not painful, maybe they are all people that never had it.....Dr Talpaz said the pleural effusion would continue as long as I stayed on Sprycel, so I am now in the XL228 trial with no problems. I hope your effusions never return, I hope the Ariad trials may help us cmlers that have had it a long time. But you my friend, are the King Of CML, not that that's a title we all clamor for, but you're it. Best of wishes, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) From: Rosen Lum <rrosenlumhotmail (DOT) com> Subject: RE: [ ] Skip's hospital saga groups (DOT) com Date: Sunday, November 9, 2008, 1:40 PM Lottie speaks for us all on that count, Skip! groups (DOT) com From: lotajamcomcast (DOT) net Date: Sun, 9 Nov 2008 02:32:13 -0600 Subject: [ ] Skip's hospital saga Dear Skip, I know everyone in this group is very sorry that you have had to be hospitalized again. Not anything one looks forward to, but was certainly warranted in your case. Thoracentesis is probably what they did for you while you were in the hospital. Let's hope and pray that changing your meds will bring you blessed relief. It's amazing that you bounce back and claim that it not all that uncomfortable. There are many people who are lifting you up in prayer, wishing you a quick recovery. http://www.thoracic .org/sections/ clinical- information/ critical- care/patient- information/ icu-devices- and-procedures/ thoracentesis- taking-a- sample-of- fluid-from- around-the- lungs.html Sending you prayers and blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Hi Skip I has PE after being on Sprycel for three years. Then they switched me to Tasigna, its' been out 9 months now and I am doing great. I remember the procedure and I almost died with pain!!! It was terrible and I hope I never have to go through that again.. Aloha Sharon _____ From: [mailto: ] On Behalf Of Skip Duffie Sent: Sunday, November 09, 2008 11:48 AM Subject: RE: [ ] Skip's hospital saga Thanks so much, I will be seeing the doc next week and will know what is the next stage. I only hope that the tinkering with me, will result in better treatment to long time survivors of CML. As far as we know, I am the longest or one of the longest survivors and it is a chance for the docs to see what lies in store for some long time survivors of Gleevec or Nilotinib or Dasatinib. The pleural effusion that I experienced is a known side effect of Dasatinib, so maybe a lower dose or even back on Nilotinib we shall see. If what I am doing or allowing to happen helps even one person than I think its well worth it. Thanks all for your prayers and well wishes. SkipD dx'ed 30++++ years ago From: Rosen Lum <rrosenlumhotmail (DOT) <mailto:rrosenlum%40hotmail.com> com> Subject: RE: [ ] Skip's hospital saga groups (DOT) <mailto:%40> com Date: Sunday, November 9, 2008, 1:40 PM Lottie speaks for us all on that count, Skip! groups (DOT) com From: lotajamcomcast (DOT) net Date: Sun, 9 Nov 2008 02:32:13 -0600 Subject: [ ] Skip's hospital saga Dear Skip, I know everyone in this group is very sorry that you have had to be hospitalized again. Not anything one looks forward to, but was certainly warranted in your case. Thoracentesis is probably what they did for you while you were in the hospital. Let's hope and pray that changing your meds will bring you blessed relief. It's amazing that you bounce back and claim that it not all that uncomfortable. There are many people who are lifting you up in prayer, wishing you a quick recovery. http://www.thoracic .org/sections/ clinical- information/ critical- care/patient- information/ icu-devices- and-procedures/ thoracentesis- taking-a- sample-of- fluid-from- around-the- lungs.html Sending you prayers and blessings, Lottie Quote Link to comment Share on other sites More sharing options...
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