Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Hi dear Lottie, I started IFN on 0.10 cc. After two weeks, my oncologist increased the dose to 0.15, then after another week to 0.20 cc. I had a very, but very bad reaction to 0.20 cc dose, so I took one day break and then kept taking 0.20 cc for about two weeks. Then the dose was increased to 0.30 cc and after two weeks to 0.40 cc. They are trying to find the right dose for you, so you feel comfortable, with a minimum side effects. I was very tired, but I could tolerate 0.40 cc, but my blood work was telling my oncologist something else, so he lowered the IFN dose to 0.30 cc and I stayed on it for almost 10 months now. I am 30 years old and my body is tolerating Interferon very well. I am tired, but I lost almost all my water retention, which is sooooooooooo GREAT!!!!!! .... so who cares if I am tired or no, I am enjoying my drop of 30 pounds from Gleevec soooo much... you guys can't imagine:) lol I will have another RT PCR (I believe it is RT - PCR) done next month to confirm if the test is still negative. I have another friend doing this trial at s Hopkins and she is on 0.24 ml of IFN. It seems like a good dose for her. My Interferon is Interferon Alfa I believe. I can look at the box and tell you exactly what it says. In the past, the patients were using high doses of IFN, but since this is a combo with Gleevec, they keep you at much lower levels. They are trying to find different combinations of treatments to see if they can come closer to " cure " for CML. My friend was on Gleevec only, but her PCR was very stubborn and pretty high after 2 years. So, she started Gleevec and vaccine trial and after 12 months her PCR became very low, but still detectable, so she switched to Interferon and is expecting her first PCR on the IFN trial. We both hope, that it will become negative soon... So my friend is actually doing the second trial now and maybe the combination of previous treatment with Gleevec only, then Gleevec and vaccine, and now Gleevec with IFN will bring her to PCRU. Who knows... I am proud of trying this... for all of us! Maybe in a near future, we will be trying two or three treatment combinations, which will prolong our remissions or bring most of the patients to PCRU... I will keep you posted Lottie and group. I am sorry, I was very bad about it lately, but I read all the emails (at least try to catch up reading all of them). Just to remind everybody and inform our new friends, I was dx in February 2005. I just celebrated my 4th year anniversary! I am on 600 mg Gleevec (plus IFN since March 2008). Love you all... such a wonderful group! Livia From: Lottie Duthu <lotajam@...> Subject: [ ] INF " CML " < > Date: Friday, February 13, 2009, 12:52 PM Dear Livka, Would you mind sharing with us how much INF you take with the Gleevec, and is it Peg Intron? I was on Inteferon Alfa for a while, along with HHT and the combination of the two were very harsh. How are you tolerating it? Congratulations on your results. Have you all as a group elected a president of the PCRU club, yet? LOL. I understand from other people who were on the Gleevec/INF combo that they were able to report they were PCRU, too. Sooner or later, you will probably be able to drop the INF, have they told you that? Yes, that is wonderful news and certainly encouraging to those who are out there struggling, it gives us hope that combos may be in our future, too. Stay with us and keep us posted, your success is a joy to all of us. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Thank you for what you are doing . You are a warrior. Eva From: livia klescova Sent: Friday, February 13, 2009 2:25 PM Subject: Re: [ ] INF Hi dear Lottie, I started IFN on 0.10 cc. After two weeks, my oncologist increased the dose to 0.15, then after another week to 0.20 cc. I had a very, but very bad reaction to 0.20 cc dose, so I took one day break and then kept taking 0.20 cc for about two weeks. Then the dose was increased to 0.30 cc and after two weeks to 0.40 cc. They are trying to find the right dose for you, so you feel comfortable, with a minimum side effects. I was very tired, but I could tolerate 0.40 cc, but my blood work was telling my oncologist something else, so he lowered the IFN dose to 0.30 cc and I stayed on it for almost 10 months now. I am 30 years old and my body is tolerating Interferon very well. I am tired, but I lost almost all my water retention, which is sooooooooooo GREAT!!!!!! .... so who cares if I am tired or no, I am enjoying my drop of 30 pounds from Gleevec soooo much... you guys can't imagine:) lol I will have another RT PCR (I believe it is RT - PCR) done next month to confirm if the test is still negative. I have another friend doing this trial at s Hopkins and she is on 0.24 ml of IFN. It seems like a good dose for her. My Interferon is Interferon Alfa I believe. I can look at the box and tell you exactly what it says. In the past, the patients were using high doses of IFN, but since this is a combo with Gleevec, they keep you at much lower levels. They are trying to find different combinations of treatments to see if they can come closer to " cure " for CML. My friend was on Gleevec only, but her PCR was very stubborn and pretty high after 2 years. So, she started Gleevec and vaccine trial and after 12 months her PCR became very low, but still detectable, so she switched to Interferon and is expecting her first PCR on the IFN trial. We both hope, that it will become negative soon... So my friend is actually doing the second trial now and maybe the combination of previous treatment with Gleevec only, then Gleevec and vaccine, and now Gleevec with IFN will bring her to PCRU. Who knows... I am proud of trying this... for all of us! Maybe in a near future, we will be trying two or three treatment combinations, which will prolong our remissions or bring most of the patients to PCRU... I will keep you posted Lottie and group. I am sorry, I was very bad about it lately, but I read all the emails (at least try to catch up reading all of them). Just to remind everybody and inform our new friends, I was dx in February 2005. I just celebrated my 4th year anniversary! I am on 600 mg Gleevec (plus IFN since March 2008). Love you all... such a wonderful group! Livia From: Lottie Duthu <lotajam@...> Subject: [ ] INF " CML " < > Date: Friday, February 13, 2009, 12:52 PM Dear Livka, Would you mind sharing with us how much INF you take with the Gleevec, and is it Peg Intron? I was on Inteferon Alfa for a while, along with HHT and the combination of the two were very harsh. How are you tolerating it? Congratulations on your results. Have you all as a group elected a president of the PCRU club, yet? LOL. I understand from other people who were on the Gleevec/INF combo that they were able to report they were PCRU, too. Sooner or later, you will probably be able to drop the INF, have they told you that? Yes, that is wonderful news and certainly encouraging to those who are out there struggling, it gives us hope that combos may be in our future, too. Stay with us and keep us posted, your success is a joy to all of us. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Hi Livia, That is fantastic for you and well done on behalf of us all for being a CML warrior! Regards, from Down Under #1149 Zavies Zero Club Dx: 25/07/07 Commenced Glivec 400mg 27/9/07 Changed to Tasigna 800mg 3/8/08 PCRs: 23/01/08 - 13.01 % 14/04/08 - 0.08 % 12/05/08 - 0.02% (Glivec 200mg) 06/08/08 - 0.09 % (commenced Tasigna) 30/09/08 - 0.18 % 19/12/08 - 0.00% From: [mailto: ] On Behalf Of livia klescova Sent: Saturday, 14 February 2009 6:25 AM Subject: Re: [ ] INF Hi dear Lottie, I started IFN on 0.10 cc. After two weeks, my oncologist increased the dose to 0.15, then after another week to 0.20 cc. I had a very, but very bad reaction to 0.20 cc dose, so I took one day break and then kept taking 0.20 cc for about two weeks. Then the dose was increased to 0.30 cc and after two weeks to 0.40 cc. They are trying to find the right dose for you, so you feel comfortable, with a minimum side effects. I was very tired, but I could tolerate 0.40 cc, but my blood work was telling my oncologist something else, so he lowered the IFN dose to 0.30 cc and I stayed on it for almost 10 months now. I am 30 years old and my body is tolerating Interferon very well. I am tired, but I lost almost all my water retention, which is sooooooooooo GREAT!!!!!! .... so who cares if I am tired or no, I am enjoying my drop of 30 pounds from Gleevec soooo much... you guys can't imagine:) lol I will have another RT PCR (I believe it is RT - PCR) done next month to confirm if the test is still negative. I have another friend doing this trial at s Hopkins and she is on 0.24 ml of IFN. It seems like a good dose for her. My Interferon is Interferon Alfa I believe. I can look at the box and tell you exactly what it says. In the past, the patients were using high doses of IFN, but since this is a combo with Gleevec, they keep you at much lower levels. They are trying to find different combinations of treatments to see if they can come closer to " cure " for CML. My friend was on Gleevec only, but her PCR was very stubborn and pretty high after 2 years. So, she started Gleevec and vaccine trial and after 12 months her PCR became very low, but still detectable, so she switched to Interferon and is expecting her first PCR on the IFN trial. We both hope, that it will become negative soon... So my friend is actually doing the second trial now and maybe the combination of previous treatment with Gleevec only, then Gleevec and vaccine, and now Gleevec with IFN will bring her to PCRU. Who knows... I am proud of trying this... for all of us! Maybe in a near future, we will be trying two or three treatment combinations, which will prolong our remissions or bring most of the patients to PCRU... I will keep you posted Lottie and group. I am sorry, I was very bad about it lately, but I read all the emails (at least try to catch up reading all of them). Just to remind everybody and inform our new friends, I was dx in February 2005. I just celebrated my 4th year anniversary! I am on 600 mg Gleevec (plus IFN since March 2008). Love you all... such a wonderful group! Livia From: Lottie Duthu <lotajam@... <mailto:lotajam%40comcast.net> > Subject: [ ] INF " CML " < <mailto:%40> > Date: Friday, February 13, 2009, 12:52 PM Dear Livka, Would you mind sharing with us how much INF you take with the Gleevec, and is it Peg Intron? I was on Inteferon Alfa for a while, along with HHT and the combination of the two were very harsh. How are you tolerating it? Congratulations on your results. Have you all as a group elected a president of the PCRU club, yet? LOL. I understand from other people who were on the Gleevec/INF combo that they were able to report they were PCRU, too. Sooner or later, you will probably be able to drop the INF, have they told you that? Yes, that is wonderful news and certainly encouraging to those who are out there struggling, it gives us hope that combos may be in our future, too. Stay with us and keep us posted, your success is a joy to all of us. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
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