Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Dear congratulations from the bottom of my heart to you, for this 10 th year anniversary of an amazzing fight. i remmember almost every step of the fights you have taken upon yourself, and i am delighted to hear that you are doing much better on sprycel. from a long time admierer giora [ ] A decade of CML I am amazed and delighted to find myself 10 years post dx today!!! On that day therapy options were very different. It was recommended I have a sibling BMT, try interferon or an unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon. I used IFN for 6 months with no change. We then added Ara-C for the next 6 months, still no change. When I found out about the STI-571 trials in the US, I reached out and found the original online 'egroup' that the bulk of the first STI patients were using that was started by Rob. I managed to get a spot in the expanded access trial in NYC. It was an expensive proposition for me to go to the US for treatment but we were so excited about the early STI data. I was on Gleevec for 12 months with no change. A huge disappointment. We upped my dose and I developed Trisomy 8 which at that time was still not well understood with TKI patients. Happily it resolves within 6 months but I was both intolerant and unresponsive to Gleevec. I did try a vaccine trial in the US but that did not help either. I remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9 and small del 6 in addition to a repeat of +8). I started the dasatinib phase II trial in Mar. 2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I took it BID but after 2 years switch to QD. I finally began showing a reduction in Ph level for the first time 8 years after being diagnosed!!! I also had the other abnormal clones come and go and MDS type cells appear. My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal clones. Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out the previous draw that showed Trisomy X was a lab error here in Ottawa. And I am relieved to know I didn't have the clone. On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since Sept. 05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait until the marrow was clearer and more stable and until my counts had 'wiggle' room so they would not crash too low and I might not require Neupogen. So far so good. I am hoping this might be the boost I need to achieve a full CCR. I will soon have to pay more attention to my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%. The past 10 years changed our lives completely. Though there have had many ups and downs, on the whole I would say we are happier, more appreciative and stronger people from it all. We had so much generous help and support from our family and friends in those long early years. We would not have made it through without them. We also would never have gotten through all this without the support and information from all the wonderful CMLers and caregivers who participate online. My children have grown and are now 24 and 21 respectively. My marriage has survived and is going strong. I continue to feel better on Sprycel than I ever did on any other treatment to date, I do still have fatigue, respiratory edema and some joint discomfort. I have not ever been able to return to work but over time we were able to downsize and adjust our lives accordingly. I thank you all for helping me get to this date and look forward to celebrating many more anniversaries and to ushering in the cure for this disease which I believe will happen in my lifetime. Peace, love and all good things, dx 11/98 Ottawa, Canada __________ Information from ESET Smart Security, version of virus signature database 3628 (20081120) __________ The message was checked by ESET Smart Security. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 --- In , " christine_saomiguel " <csaomiguel@...> wrote: > HI CHRISTINE: Congratulations on how well your doing. I found it interesting that you went to NY for the clinical trial. I was diagnosed in Dec. of 1998, and it will be 10 years for me this Dec. 2008, and I did the Interferon, the ARA-C, Went to see numerous doctors about a BMT. I was in NY at NY Presbyterian Hospital under Dr. Silver for my trial from Oct. 2000 to May 2001 when it was approved by the FDA, and I was in CCR by July of 2001. I am still on 400mg. of the Gleevec. I have been very blessed. You said you were on Sprycel. I kept in touch with a woman who did not respond to the Gleevec, and she has been on Sprycel now for awhile. She tells me she is doing fine, but when she calls me she sounds like she is drowning in fluid. She has not reached remission, and she just seems happy to not have all the side effects of Gleevec. You mentioned Pulmonary Edema. Is it a constant problem on the Sprycel? Could you please write back to me to let me know how your dealing with side effects of Sprycel. Suzzie > I am amazed and delighted to find myself 10 years post dx today!!! On that day therapy > options were very different. It was recommended I have a sibling BMT, try interferon or an > unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon. I used IFN > for 6 months with no change. We then added Ara-C for the next 6 months, still no > change. When I found out about the STI-571 trials in the US, I reached out and found the > original online 'egroup' that the bulk of the first STI patients were using that was started > by Rob. I managed to get a spot in the expanded access trial in NYC. It was an expensive > proposition for me to go to the US for treatment but we were so excited about the early > STI data. I was on Gleevec for 12 months with no change. A huge disappointment. We > upped my dose and I developed Trisomy 8 which at that time was still not well understood > with TKI patients. Happily it resolves within 6 months but I was both intolerant and > unresponsive to Gleevec. I did try a vaccine trial in the US but that did not help either. I > remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9 and > small del 6 in addition to a repeat of +8). I started the dasatinib phase II trial in Mar. > 2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I took it BID > but after 2 years switch to QD. I finally began showing a reduction in Ph level for the first > time 8 years after being diagnosed!!! I also had the other abnormal clones come and go > and MDS type cells appear. > > My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal clones. > Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out the > previous draw that showed Trisomy X was a lab error here in Ottawa. And I am relieved to > know I didn't have the clone. > On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since Sept. > 05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait until the > marrow was clearer and more stable and until my counts had 'wiggle' room so they would > not crash too low and I might not require Neupogen. So far so good. I am hoping this > might be the boost I need to achieve a full CCR. I will soon have to pay more attention to > my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%. > > The past 10 years changed our lives completely. Though there have had many ups and > downs, on the whole I would say we are happier, more appreciative and stronger people > from it all. We had so much generous help and support from our family and friends in > those long early years. We would not have made it through without them. We also would > never have gotten through all this without the support and information from all the > wonderful CMLers and caregivers who participate online. My children have grown and are > now 24 and 21 respectively. My marriage has survived and is going strong. I continue to > feel better on Sprycel than I ever did on any other treatment to date, I do still have fatigue, > respiratory edema and some joint discomfort. I have not ever been able to return to work > but over time we were able to downsize and adjust our lives accordingly. > > I thank you all for helping me get to this date and look forward to celebrating many more > anniversaries and to ushering in the cure for this disease which I believe will happen in my > lifetime. > > Peace, love and all good things, > > dx 11/98 > Ottawa, Canada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Happy cancerversary suzzie.You have come a long way baby. Take care Eva town,Ontario From: suzzienovember Sent: Thursday, November 20, 2008 6:37 PM Subject: [ ] Re: A decade of CML --- In , " christine_saomiguel " <csaomiguel@...> wrote: > HI CHRISTINE: Congratulations on how well your doing. I found it interesting that you went to NY for the clinical trial. I was diagnosed in Dec. of 1998, and it will be 10 years for me this Dec. 2008, and I did the Interferon, the ARA-C, Went to see numerous doctors about a BMT. I was in NY at NY Presbyterian Hospital under Dr. Silver for my trial from Oct. 2000 to May 2001 when it was approved by the FDA, and I was in CCR by July of 2001. I am still on 400mg. of the Gleevec. I have been very blessed. You said you were on Sprycel. I kept in touch with a woman who did not respond to the Gleevec, and she has been on Sprycel now for awhile. She tells me she is doing fine, but when she calls me she sounds like she is drowning in fluid. She has not reached remission, and she just seems happy to not have all the side effects of Gleevec. You mentioned Pulmonary Edema. Is it a constant problem on the Sprycel? Could you please write back to me to let me know how your dealing with side effects of Sprycel. Suzzie > I am amazed and delighted to find myself 10 years post dx today!!! On that day therapy > options were very different. It was recommended I have a sibling BMT, try interferon or an > unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon. I used IFN > for 6 months with no change. We then added Ara-C for the next 6 months, still no > change. When I found out about the STI-571 trials in the US, I reached out and found the > original online 'egroup' that the bulk of the first STI patients were using that was started > by Rob. I managed to get a spot in the expanded access trial in NYC. It was an expensive > proposition for me to go to the US for treatment but we were so excited about the early > STI data. I was on Gleevec for 12 months with no change. A huge disappointment. We > upped my dose and I developed Trisomy 8 which at that time was still not well understood > with TKI patients. Happily it resolves within 6 months but I was both intolerant and > unresponsive to Gleevec. I did try a vaccine trial in the US but that did not help either. I > remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9 and > small del 6 in addition to a repeat of +8). I started the dasatinib phase II trial in Mar. > 2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I took it BID > but after 2 years switch to QD. I finally began showing a reduction in Ph level for the first > time 8 years after being diagnosed!!! I also had the other abnormal clones come and go > and MDS type cells appear. > > My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal clones. > Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out the > previous draw that showed Trisomy X was a lab error here in Ottawa. And I am relieved to > know I didn't have the clone. > On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since Sept. > 05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait until the > marrow was clearer and more stable and until my counts had 'wiggle' room so they would > not crash too low and I might not require Neupogen. So far so good. I am hoping this > might be the boost I need to achieve a full CCR. I will soon have to pay more attention to > my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%. > > The past 10 years changed our lives completely. Though there have had many ups and > downs, on the whole I would say we are happier, more appreciative and stronger people > from it all. We had so much generous help and support from our family and friends in > those long early years. We would not have made it through without them. We also would > never have gotten through all this without the support and information from all the > wonderful CMLers and caregivers who participate online. My children have grown and are > now 24 and 21 respectively. My marriage has survived and is going strong. I continue to > feel better on Sprycel than I ever did on any other treatment to date, I do still have fatigue, > respiratory edema and some joint discomfort. I have not ever been able to return to work > but over time we were able to downsize and adjust our lives accordingly. > > I thank you all for helping me get to this date and look forward to celebrating many more > anniversaries and to ushering in the cure for this disease which I believe will happen in my > lifetime. > > Peace, love and all good things, > > dx 11/98 > Ottawa, Canada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Dear , A hugh Congrats!!! What an amazing journey you have had. I know the early years were so tough, but you hung in and are victorious. 1998 was quite a year, also was Nov. 98, if I remember correctly, and I was in August. Who would have thunk it??? Back then I remember hoping to get 3 good years. Now it seems we have to save our pennies and plan for an old age! You've had a bumpier ride than most and came through a clear winner. Good for you! All good things to you today, Ellen-- In , " christine_saomiguel " <csaomiguel@...> wDrote: > > I am amazed and delighted to find myself 10 years post dx today!!! On that day therapy > options were very different. It was recommended I have a sibling BMT, try interferon or an > unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon. I used IFN > for 6 months with no change. We then added Ara-C for the next 6 months, still no > change. When I found out about the STI-571 trials in the US, I reached out and found the > original online 'egroup' that the bulk of the first STI patients were using that was started > by Rob. I managed to get a spot in the expanded access trial in NYC. It was an expensive > proposition for me to go to the US for treatment but we were so excited about the early > STI data. I was on Gleevec for 12 months with no change. A huge disappointment. We > upped my dose and I developed Trisomy 8 which at that time was still not well understood > with TKI patients. Happily it resolves within 6 months but I was both intolerant and > unresponsive to Gleevec. I did try a vaccine trial in the US but that did not help either. I > remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9 and > small del 6 in addition to a repeat of +8). I started the dasatinib phase II trial in Mar. > 2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I took it BID > but after 2 years switch to QD. I finally began showing a reduction in Ph level for the first > time 8 years after being diagnosed!!! I also had the other abnormal clones come and go > and MDS type cells appear. > > My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal clones. > Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out the > previous draw that showed Trisomy X was a lab error here in Ottawa. And I am relieved to > know I didn't have the clone. > On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since Sept. > 05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait until the > marrow was clearer and more stable and until my counts had 'wiggle' room so they would > not crash too low and I might not require Neupogen. So far so good. I am hoping this > might be the boost I need to achieve a full CCR. I will soon have to pay more attention to > my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%. > > The past 10 years changed our lives completely. Though there have had many ups and > downs, on the whole I would say we are happier, more appreciative and stronger people > from it all. We had so much generous help and support from our family and friends in > those long early years. We would not have made it through without them. We also would > never have gotten through all this without the support and information from all the > wonderful CMLers and caregivers who participate online. My children have grown and are > now 24 and 21 respectively. My marriage has survived and is going strong. I continue to > feel better on Sprycel than I ever did on any other treatment to date, I do still have fatigue, > respiratory edema and some joint discomfort. I have not ever been able to return to work > but over time we were able to downsize and adjust our lives accordingly. > > I thank you all for helping me get to this date and look forward to celebrating many more > anniversaries and to ushering in the cure for this disease which I believe will happen in my > lifetime. > > Peace, love and all good things, > > dx 11/98 > Ottawa, Canada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Hi , Thank you for the 10 year update. You are so close to crossing the finish line and getting a number in the Zero Club that I can taste it. You are a shining star and an example of someone who went and seeked out the top CML experts for treatment. Most patients without access to the experts would have gone the transplant route. The turtles always manage to cross the finish line. Happy Anniversary, Zavie Zavie (age 70) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of christine_saomiguel Sent: November 20, 2008 2:11 PM Subject: [ ] A decade of CML I am amazed and delighted to find myself 10 years post dx today!!! On that day therapy options were very different. It was recommended I have a sibling BMT, try interferon or an unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon. I used IFN for 6 months with no change. We then added Ara-C for the next 6 months, still no change. When I found out about the STI-571 trials in the US, I reached out and found the original online 'egroup' that the bulk of the first STI patients were using that was started by Rob. I managed to get a spot in the expanded access trial in NYC. It was an expensive proposition for me to go to the US for treatment but we were so excited about the early STI data. I was on Gleevec for 12 months with no change. A huge disappointment. We upped my dose and I developed Trisomy 8 which at that time was still not well understood with TKI patients. Happily it resolves within 6 months but I was both intolerant and unresponsive to Gleevec. I did try a vaccine trial in the US but that did not help either. I remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9 and small del 6 in addition to a repeat of +8). I started the dasatinib phase II trial in Mar. 2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I took it BID but after 2 years switch to QD. I finally began showing a reduction in Ph level for the first time 8 years after being diagnosed!!! I also had the other abnormal clones come and go and MDS type cells appear. My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal clones. Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out the previous draw that showed Trisomy X was a lab error here in Ottawa. And I am relieved to know I didn't have the clone. On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since Sept. 05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait until the marrow was clearer and more stable and until my counts had 'wiggle' room so they would not crash too low and I might not require Neupogen. So far so good. I am hoping this might be the boost I need to achieve a full CCR. I will soon have to pay more attention to my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%. The past 10 years changed our lives completely. Though there have had many ups and downs, on the whole I would say we are happier, more appreciative and stronger people from it all. We had so much generous help and support from our family and friends in those long early years. We would not have made it through without them. We also would never have gotten through all this without the support and information from all the wonderful CMLers and caregivers who participate online. My children have grown and are now 24 and 21 respectively. My marriage has survived and is going strong. I continue to feel better on Sprycel than I ever did on any other treatment to date, I do still have fatigue, respiratory edema and some joint discomfort. I have not ever been able to return to work but over time we were able to downsize and adjust our lives accordingly. I thank you all for helping me get to this date and look forward to celebrating many more anniversaries and to ushering in the cure for this disease which I believe will happen in my lifetime. Peace, love and all good things, dx 11/98 Ottawa, Canada Quote Link to comment Share on other sites More sharing options...
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