Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Dear Skip, Hope you have good luck on the Sprycel. As I said in an earlier post, I think it is a very good and a very potent drug and I am sure that is the reason for the side effects. The worst seems over. I had fever when I first took it too, in fact they sent me to the hospital because it was 101 degrees F. We were told to report to the hospital anytime our fever went up to 101. Well for me it was very high, because my temperature hovers around the 95 mark and hyperhtermia begins at 94. Therefore I am always cold. Of course we always want to hear from you. You happen to be an enigma, you have lived longer with CML that anyone I have ever known. Now I think I may be the oldest with CML. Some of my friends tell me I might live to be 100, but I still wouldn't have the record as living the longest, you will always have that record. Thanks for updating us on your present condition. It's amazing what you have done and still continue to do. There must be a reason for you to be here to tell the tale. Blessings and much joy, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Hi Skip: So glad to see there was a post from you, even if it was about how sick you were. You came across my mind this past week. I was looking at all the names on the list by my computer, and I was wondering how you have been. Glad you said your feeling much better. You have been such a CML warrior for so long, and a real inspiration to everyone. Can you tell us what treatment they are giving you now? That was good that your spleen is not enlarged etc. Just post when you feel up to it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Hi suzzie they are treating the spleen with an antifungal meds. Am off nilotinib for a while not on any other meds feel great, Thanks for asking Skip From: suzzienovember <suzzienovember@...> Subject: [ ] Re: Skip Duffie Received: Saturday, June 20, 2009, 10:13 PM Hi Skip: So glad to see there was a post from you, even if it was about how sick you were. You came across my mind this past week. I was looking at all the names on the list by my computer, and I was wondering how you have been. Glad you said your feeling much better. You have been such a CML warrior for so long, and a real inspiration to everyone. Can you tell us what treatment they are giving you now? That was good that your spleen is not enlarged etc. Just post when you feel up to it. __________________________________________________________________ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Thank you for this update. It is very humbling and makes one feel so helpless. Skip is in my prayers. What a knockabout he's taken. On Sat, Nov 21, 2009 at 10:09 AM, Zavie <zmiller@...> wrote: > > > Hi all, > > I spoke with Skip this morning and he asked me report on how he is doing. > When I spoke to him a couple of weeks ago he was in really bad shape. I > didn't think he was going to make it. Today sounded well and back to his > old > self. > > At the moment he is off all medications waiting for what is left of his > marrow to recover. It turned out that it was the Exjade side effects that > were causing him most of his problems. > > Here are some of his current counts. They are not in error. WBC = 0.5, > Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but > not > as often as the past couple of months. > > His case was presented to a panel doctors with Dr. Marin from > Hammersmith moderating the session. One of the doctor's opinion was that > this patient should be dead. > > Dr. Marin has suggested that he go off all treatment to give his blood and > marrow a chance to recover. This has helped dramatically and we will see > what the future brings. Dr. Marin doesn't think he should be subjected to > any of the CML drugs. > > Skip has had CML for over 32 years. > > Zavie > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > e-mail: zmiller@... <zmiller%40sympatico.ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Hi Zavie, I have never heard of counts like that, and I am in awe of Skip. What a trooper he has been all these years, and he is surely in all of our prayers. Say Hi to him, love, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 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. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club > > > Hi all, > > I spoke with Skip this morning and he asked me report on how he is doing. > When I spoke to him a couple of weeks ago he was in really bad shape. I > didn't think he was going to make it. Today sounded well and back to his > old > self. > > At the moment he is off all medications waiting for what is left of his > marrow to recover. It turned out that it was the Exjade side effects that > were causing him most of his problems. > > Here are some of his current counts. They are not in error. WBC = 0.5, > Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but > not > as often as the past couple of months. > > His case was presented to a panel doctors with Dr. Marin from > Hammersmith moderating the session. One of the doctor's opinion was that > this patient should be dead. > > Dr. Marin has suggested that he go off all treatment to give his blood and > marrow a chance to recover. This has helped dramatically and we will see > what the future brings. Dr. Marin doesn't think he should be subjected to > any of the CML drugs. > > Skip has had CML for over 32 years. > > Zavie > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > e-mail: zmiller@... <zmiller%40sympatico.ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Sending good wishes to Skip from rainy old London SUSAN LEIGH www.caringbridge.org/visit/susanleigh On 21 Nov 2009, at 18:09, Zavie wrote: > Hi all, > > I spoke with Skip this morning and he asked me report on how he is > doing. > When I spoke to him a couple of weeks ago he was in really bad > shape. I > didn't think he was going to make it. Today sounded well and back > to his old > self. > > At the moment he is off all medications waiting for what is left of > his > marrow to recover. It turned out that it was the Exjade side > effects that > were causing him most of his problems. > > Here are some of his current counts. They are not in error. WBC = 0.5, > Platelets, 4.0 and Hemoglobin=80. He is still transfusion > dependent, but not > as often as the past couple of months. > > His case was presented to a panel doctors with Dr. Marin from > Hammersmith moderating the session. One of the doctor's opinion was > that > this patient should be dead. > > Dr. Marin has suggested that he go off all treatment to give his > blood and > marrow a chance to recover. This has helped dramatically and we > will see > what the future brings. Dr. Marin doesn't think he should be > subjected to > any of the CML drugs. > > Skip has had CML for over 32 years. > > Zavie > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Thank you for that update, our good Canadian neighbor! 32 years is amazing considering what he had available during that tine. He us from hearty stock, so we all expect a full recovery! Matt Florida Sent from my iPhone On Nov 21, 2009, at 1:09 PM, " Zavie " <zmiller@...> wrote: > Hi all, > > I spoke with Skip this morning and he asked me report on how he is > doing. > When I spoke to him a couple of weeks ago he was in really bad > shape. I > didn't think he was going to make it. Today sounded well and back to > his old > self. > > At the moment he is off all medications waiting for what is left of > his > marrow to recover. It turned out that it was the Exjade side effects > that > were causing him most of his problems. > > Here are some of his current counts. They are not in error. WBC = 0.5, > Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, > but not > as often as the past couple of months. > > His case was presented to a panel doctors with Dr. Marin from > Hammersmith moderating the session. One of the doctor's opinion was > that > this patient should be dead. > > Dr. Marin has suggested that he go off all treatment to give his > blood and > marrow a chance to recover. This has helped dramatically and we will > see > what the future brings. Dr. Marin doesn't think he should be > subjected to > any of the CML drugs. > > Skip has had CML for over 32 years. > > Zavie > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > > Quote Link to comment Share on other sites More sharing options...
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