Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Hello All, For those of you who have known me and to the new comers on the group, I just wanted to share my new results with all of you. PCR NEGATIVE! AGAIN!!!After Diagnosis in May 2000 I took Hydrea to get my cbc's under control and then after a few weeks I started taking daily injections of interferon + ARC 10 days a month. (Personally refusing the BMT option as a first line of treatment) That was my daily regime for a little over a year. It kept my CML under control but had no affect on my positive status - no cytogentic remission and no PCR remission. I was not legible for the gleevec trials back then so I waited for the FDA approval of Gleevec and started on 400 mgs in June 2001. In August 2001 around 60 days or so after taking the Gleevec I was in CCR & PCR. Last year Genzyne Genetics, one of the best, if not the best laboratory in the US, detected a small amount of positive cells but that was right after they upgraded all of their equipment with the latest technology. My ONC suggested that I should increase my dosage to 600 mgs and start getting my biopsy every 90days again as he was concerned I may be starting to show some resistance. I consulted with him and another ONC here @ the Moffitt Cancer center in Tampa FL and suggested to them that It very well may be that the newer equipment may have detected something it couldn't before with the older equipment considering I still had a 4 log reduction even with the slight positive cell detection. I opted to remain on 400 mgs and monitor my PCR by peripheral blood test and the ONC @ Moffitt agreed, although my regular ONC didn't (I think he has become a bit emotionally attached after all these years with him and he was scared of me loosing my remission and believe me I LOVE HIM TOO) With my annual biopsy due in March I was a bit nerves about whether there would be an increase because this last year has been a very challenging for me personally. A-LOT OF STRESS By the grace of God the results were negative - no cells detected! Sometimes it seems like just yesterday that I felt that fear that all of us feel during the initial diagnosis. (Especially when I see a post from someone new) I wish I could just reach out and hug them and let them know it's going to be ok. I'll be 42 on Saturday and proud of it! I have become a grandmother 3 times in the last 7 years.I can't even describe how wonderful that's been. For those of you who have the pleasure of grandchildren- you know exactly what I mean. Life hasn't been easy. And sometimes and can seem unfair; but it's exactly as it's meant to be and I am ok with that. I trust that God knows the plan. I think back and wonder where I would have been had I not had these wonderful people in these groups to share with and learn from. Thank you all for your love, wisdom and support over the years! ez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 CONGRATULATIONS !!!! That is fantastic news. You're a perfect example of how important it is for a patient to be informed and empowered to make their treatment decisions. I hope you'll celebrate your survivorship with someone special Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 HEY HEY HEY! Way to go! Keep up the good " work " !!! Congratulations! Chris --- ez <lmartinez@...> wrote: > Hello All, > > For those of you who have known me and to the new > comers on the group, I > just wanted to share my new results with all of you. > > > PCR NEGATIVE! AGAIN!!!After Diagnosis in May 2000 I > took Hydrea to get my > cbc's under control and then after a few weeks I > started taking daily > injections of interferon + ARC 10 days a month. > (Personally refusing the BMT > option as a first line of treatment) That was my > daily regime for a little > over a year. > > It kept my CML under control but had no affect on my > positive status - no > cytogentic remission and no PCR remission. I was not > legible for the gleevec > trials back then so I waited for the FDA approval of > Gleevec and started on > 400 mgs in June 2001. In August 2001 around 60 days > or so after taking the > Gleevec I was in CCR & PCR. > > Last year Genzyne Genetics, one of the best, if not > the best laboratory in > the US, detected a small amount of positive cells > but that was right after > they upgraded all of their equipment with the latest > technology. > > My ONC suggested that I should increase my dosage to > 600 mgs and start > getting my biopsy every 90days again as he was > concerned I may be > starting to show some resistance. I consulted with > him and another ONC here > @ the Moffitt Cancer center in Tampa FL and > suggested to them that It very > well may be that the newer equipment may have > detected something it couldn't > before with the older equipment considering I still > had a 4 log reduction > even with the slight positive cell detection. I > opted to remain on 400 mgs > and monitor my PCR by peripheral blood test and the > ONC @ Moffitt agreed, > although my regular ONC didn't (I think he has > become a bit emotionally > attached after all these years with him and he was > scared of me loosing my > remission and believe me I LOVE HIM TOO) > > With my annual biopsy due in March I was a bit > nerves about whether there > would be an increase because this last year has been > a very challenging for > me personally. A-LOT OF STRESS > > By the grace of God the results were negative - no > cells detected! > > Sometimes it seems like just yesterday that I felt > that fear that all of us > feel during the initial diagnosis. > > (Especially when I see a post from someone new) I > wish I could just reach > out and hug them and let them know it's going to be > ok. > > I'll be 42 on Saturday and proud of it! I have > become a grandmother 3 times > in the last 7 years.I can't even describe how > wonderful that's been. For > those of you who have the pleasure of grandchildren- > you know exactly what I > mean. Life hasn't been easy. And sometimes and can > seem unfair; but it's > exactly as it's meant to be and I am ok with that. > I trust that God knows > the plan. > > I think back and wonder where I would have been had > I not had these > wonderful people in these groups to share with and > learn from. > > Thank you all for your love, wisdom and support over > the years! > > > > > > > > > > > > > > ez > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 Congratulations ! I am so happy for you. I hope I get some good results. I am going to Moffitt center Thursday for my 3 month visit. I think of you often.You are indeed an inpiration for us all. Love, Joan P. ville, fl dxd'd 8/03> Gleevec 400mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 And another one from last year. My heart is very heavy. Zavie [ ] New PCR Results from annual bmb Hello All, For those of you who have known me and to the new comers on the group, I just wanted to share my new results with all of you. PCR NEGATIVE! AGAIN!!!After Diagnosis in May 2000 I took Hydrea to get my cbc's under control and then after a few weeks I started taking daily injections of interferon + ARC 10 days a month. (Personally refusing the BMT option as a first line of treatment) That was my daily regime for a little over a year. It kept my CML under control but had no affect on my positive status - no cytogentic remission and no PCR remission. I was not legible for the gleevec trials back then so I waited for the FDA approval of Gleevec and started on 400 mgs in June 2001. In August 2001 around 60 days or so after taking the Gleevec I was in CCR & PCR. Last year Genzyne Genetics, one of the best, if not the best laboratory in the US, detected a small amount of positive cells but that was right after they upgraded all of their equipment with the latest technology. My ONC suggested that I should increase my dosage to 600 mgs and start getting my biopsy every 90days again as he was concerned I may be starting to show some resistance. I consulted with him and another ONC here @ the Moffitt Cancer center in Tampa FL and suggested to them that It very well may be that the newer equipment may have detected something it couldn't before with the older equipment considering I still had a 4 log reduction even with the slight positive cell detection. I opted to remain on 400 mgs and monitor my PCR by peripheral blood test and the ONC @ Moffitt agreed, although my regular ONC didn't (I think he has become a bit emotionally attached after all these years with him and he was scared of me loosing my remission and believe me I LOVE HIM TOO) With my annual biopsy due in March I was a bit nerves about whether there would be an increase because this last year has been a very challenging for me personally. A-LOT OF STRESS By the grace of God the results were negative - no cells detected! Sometimes it seems like just yesterday that I felt that fear that all of us feel during the initial diagnosis. (Especially when I see a post from someone new) I wish I could just reach out and hug them and let them know it's going to be ok. I'll be 42 on Saturday and proud of it! I have become a grandmother 3 times in the last 7 years.I can't even describe how wonderful that's been. For those of you who have the pleasure of grandchildren- you know exactly what I mean. Life hasn't been easy. And sometimes and can seem unfair; but it's exactly as it's meant to be and I am ok with that. I trust that God knows the plan. I think back and wonder where I would have been had I not had these wonderful people in these groups to share with and learn from. Thank you all for your love, wisdom and support over the years! ez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Zavie, My heart is heavy too, thank you for letting us read her post to . You have to wonder, what purpose is served by the taking of a life that did so much for so many, and had also faced so many tragic obstacles of her own. surely earned her wings on earth and is now smiling down on her family. Bobby Zavie miller <zmiller@...> wrote: And another one from last year. My heart is very heavy. Zavie [ ] New PCR Results from annual bmb Hello All, For those of you who have known me and to the new comers on the group, I just wanted to share my new results with all of you. PCR NEGATIVE! AGAIN!!!After Diagnosis in May 2000 I took Hydrea to get my cbc's under control and then after a few weeks I started taking daily injections of interferon + ARC 10 days a month. (Personally refusing the BMT option as a first line of treatment) That was my daily regime for a little over a year. It kept my CML under control but had no affect on my positive status - no cytogentic remission and no PCR remission. I was not legible for the gleevec trials back then so I waited for the FDA approval of Gleevec and started on 400 mgs in June 2001. In August 2001 around 60 days or so after taking the Gleevec I was in CCR & PCR. Last year Genzyne Genetics, one of the best, if not the best laboratory in the US, detected a small amount of positive cells but that was right after they upgraded all of their equipment with the latest technology. My ONC suggested that I should increase my dosage to 600 mgs and start getting my biopsy every 90days again as he was concerned I may be starting to show some resistance. I consulted with him and another ONC here @ the Moffitt Cancer center in Tampa FL and suggested to them that It very well may be that the newer equipment may have detected something it couldn't before with the older equipment considering I still had a 4 log reduction even with the slight positive cell detection. I opted to remain on 400 mgs and monitor my PCR by peripheral blood test and the ONC @ Moffitt agreed, although my regular ONC didn't (I think he has become a bit emotionally attached after all these years with him and he was scared of me loosing my remission and believe me I LOVE HIM TOO) With my annual biopsy due in March I was a bit nerves about whether there would be an increase because this last year has been a very challenging for me personally. A-LOT OF STRESS By the grace of God the results were negative - no cells detected! Sometimes it seems like just yesterday that I felt that fear that all of us feel during the initial diagnosis. (Especially when I see a post from someone new) I wish I could just reach out and hug them and let them know it's going to be ok. I'll be 42 on Saturday and proud of it! I have become a grandmother 3 times in the last 7 years.I can't even describe how wonderful that's been. For those of you who have the pleasure of grandchildren- you know exactly what I mean. Life hasn't been easy. And sometimes and can seem unfair; but it's exactly as it's meant to be and I am ok with that. I trust that God knows the plan. I think back and wonder where I would have been had I not had these wonderful people in these groups to share with and learn from. Thank you all for your love, wisdom and support over the years! ez Quote Link to comment Share on other sites More sharing options...
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