Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Good Morning Everyone On the Australian Talkbloodcancer Bulletin Board a posting has come thru about a little toddler A little boy who is 2 years just diagnosed with CML Mum is trying to find out as much info as possible about babies with CML I thought I would ask you guys, if you have heard of any other toddlers with the condition and if so, do you know the experience of those families. Little fellow is on glivec Uncharted waters if may seem. Thanks Sue (Aussie) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Have not hear much about this case - but if he was my child, I would transplant if there is a match especially sibling. Otherwise, after reading so many studies and wishing we had done so -- interferon upon diagnosis with gleevec shortly after. The published cases of this shows probable cure.. There is no research of TKIs for the duration that this little guy would need it- so I would be curious to hear what the specialists are recommending. -shalyn > Good Morning Everyone > > On the Australian Talkbloodcancer Bulletin Board a posting has come > thru about a little toddler > > A little boy who is 2 years just diagnosed with CML > > Mum is trying to find out as much info as possible about babies with CML > > I thought I would ask you guys, if you have heard of any other > toddlers with the condition > and if so, do you know the experience of those families. > > Little fellow is on glivec > > Uncharted waters if may seem. > > Thanks > Sue (Aussie) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Hi Shaylan, Could you provide us with the published articles that show that Gleevec shortly after Interferon shows a probable cure? The only study that I know about that did this was the IRIS trial. It was never the intention of the trial to start with Interferon for a short while and then switch to Gleevec. Those patients initially on Interferon switched to Gleevec because they couldn't tolerate Interferon. Based on the toxic affects that Interferon has on patients, that is the last drug I would give to a young child. In one of the earlier papers on Interferon by Dr. Talpaz (http://www.medscape.com/viewarticle/430517) only 7% of patients achieved a functional cure for CML on Interferon alone. If it was my child, I think that I would have him go on Gleevec and bet on the fact that a cure for CML would be available in the next 10-20 years. Doing a BMT does very nasty things to your body, including causing death. Mortality rates are simply too high for my liking. Chronic GVHD and infertility are two other nasty side effects of a BMT that I don't like. I will dig up some information and pass it on to Sue. The best advice I can offer is to introduce her to the top CML experts and transplant doctors so she could get their opinions in order to make a decision for the future. 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 shalyn@... Sent: October 14, 2008 6:58 PM Subject: Re: [ ] Toddler with CML Have not hear much about this case - but if he was my child, I would transplant if there is a match especially sibling. Otherwise, after reading so many studies and wishing we had done so -- interferon upon diagnosis with gleevec shortly after. The published cases of this shows probable cure.. There is no research of TKIs for the duration that this little guy would need it- so I would be curious to hear what the specialists are recommending. -shalyn > Good Morning Everyone > > On the Australian Talkbloodcancer Bulletin Board a posting has come > thru about a little toddler > > A little boy who is 2 years just diagnosed with CML > > Mum is trying to find out as much info as possible about babies with CML > > I thought I would ask you guys, if you have heard of any other > toddlers with the condition > and if so, do you know the experience of those families. > > Little fellow is on glivec > > Uncharted waters if may seem. > > Thanks > Sue (Aussie) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 I will send along the patient studies done where patients have gone off of TKI's (having had interferon upon diagnosis) and have remained PCRU. The interferon you speak of is a way higher dose than what I am speaking of - there are patients on interferon currently who have nil side effects and are using in combo treatment with gleevec or sprycel. In regards to a toddler going on gleevec waiting for a cure (10-20 years)- IMO raising a baby on gleevec (where the studies have not been done on a developing child's bone development, infertility, etc) is risky as well - there is a calculated risk in both arenas.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Thanks Zavie I am at loss on how a Mother would feel if a little guy this age had CML I know how I feel physically, so a baby - he can hardly talk as yet to verbalise If you can send some info Zavie - and we can as a whole support with some knowledge for this young Mum it would be appreciated. It would be fantastic if this little guy in his lifetime a cure could be found. 20 years hence - this little boy will only be 22 and another life of challenges ahead of him. His name is Kayne Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Or there is an option to do a combo of Gleevec and IFN, that way IFN is not as toxic to the body and may also bring good results (long lasting remission - I don't want to say " cure " ). What do you think Zavie? Livia From: Zavie <zmiller@...> Subject: RE: [ ] Toddler with CML Date: Wednesday, October 15, 2008, 1:33 AM Hi Shaylan, Could you provide us with the published articles that show that Gleevec shortly after Interferon shows a probable cure? The only study that I know about that did this was the IRIS trial. It was never the intention of the trial to start with Interferon for a short while and then switch to Gleevec. Those patients initially on Interferon switched to Gleevec because they couldn't tolerate Interferon. Based on the toxic affects that Interferon has on patients, that is the last drug I would give to a young child. In one of the earlier papers on Interferon by Dr. Talpaz (http://www.medscape .com/viewarticle /430517) only 7% of patients achieved a functional cure for CML on Interferon alone. If it was my child, I think that I would have him go on Gleevec and bet on the fact that a cure for CML would be available in the next 10-20 years. Doing a BMT does very nasty things to your body, including causing death. Mortality rates are simply too high for my liking. Chronic GVHD and infertility are two other nasty side effects of a BMT that I don't like. I will dig up some information and pass it on to Sue. The best advice I can offer is to introduce her to the top CML experts and transplant doctors so she could get their opinions in order to make a decision for the future. 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: zmillersympatico (DOT) ca Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of shalynlinklater (DOT) ca Sent: October 14, 2008 6:58 PM groups (DOT) com Subject: Re: [ ] Toddler with CML Have not hear much about this case - but if he was my child, I would transplant if there is a match especially sibling. Otherwise, after reading so many studies and wishing we had done so -- interferon upon diagnosis with gleevec shortly after. The published cases of this shows probable cure.. There is no research of TKIs for the duration that this little guy would need it- so I would be curious to hear what the specialists are recommending. -shalyn > Good Morning Everyone > > On the Australian Talkbloodcancer Bulletin Board a posting has come > thru about a little toddler > > A little boy who is 2 years just diagnosed with CML > > Mum is trying to find out as much info as possible about babies with CML > > I thought I would ask you guys, if you have heard of any other > toddlers with the condition > and if so, do you know the experience of those families. > > Little fellow is on glivec > > Uncharted waters if may seem. > > Thanks > Sue (Aussie) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 This is what I am speaking of - and I said possible remission (there trials are being done currently) but this treatment shows promise - will forward the trials on this.. > Or there is an option to do a combo of Gleevec and IFN, that way IFN > is not as toxic to the body and may also bring good results (long > lasting remission - I don't want to say " cure " ). What do you think > Zavie? Livia > ody, including causing death. > Mortality rates are simply too high for my liking. Chronic GVHD and > infertility are two other nasty side effects of a BMT that I don't like. >> On the Australian Talkbloodcancer Bulletin Board a posting has come >> thru about a little toddler >> >> A little boy who is 2 years just diagnosed with CML >> >> Mum is trying to find out as much info as possible about babies with CML >> >> I thought I would ask you guys, if you have heard of any other >> toddlers with the condition >> and if so, do you know the experience of those families. >> >> Little fellow is on glivec >> >> Uncharted waters if may seem. >> >> Thanks >> Sue (Aussie) >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 Hi Shalyn, I was on interferon prior to starting Gleevec and was so happy to get off interferon, because of terrible side effects, swore never to take interferon again no matter what. I would like to see the published cases showing interferon and Gleevec to be a probable cure. If the dose of interferon was low enough and could work for people who have had good results with Gleevec and be a probable cure, I would definitely give it a try. Thanks, M > > Have not hear much about this case - but if he was my child, I would > transplant if there is a match especially sibling. Otherwise, after > reading so many studies and wishing we had done so -- interferon upon > diagnosis with gleevec shortly after. The published cases of this > shows probable cure.. > > > There is no research of TKIs for the duration that this little guy > would need it- so I would be curious to hear what the specialists are > recommending. > -shalyn > > > Good Morning Everyone > > > > On the Australian Talkbloodcancer Bulletin Board a posting has come > > thru about a little toddler > > > > A little boy who is 2 years just diagnosed with CML > > > > Mum is trying to find out as much info as possible about babies with CML > > > > I thought I would ask you guys, if you have heard of any other > > toddlers with the condition > > and if so, do you know the experience of those families. > > > > Little fellow is on glivec > > > > Uncharted waters if may seem. > > > > Thanks > > Sue (Aussie) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 Hi , Interferon was pretty nasty to me. It left me with CHF (Congestive Heart Failure). I found out later that CHF was one of the known side effects of Interferon. I have only ever seen one paper that talks about Interferon as a cure for CML. It was a French study and I am still looking for the actual paper. Let me describe what I remember. First of all, it wasn't a proper clinical trial to see if Interferon was a cure for CML. What happened is that a number of patients (French) were so fed up with the Interferon side effects that they told their doctor that they wanted off Interferon. They way they put it was that they would rather take their chances with nothing than continue on Interferon. The doctor then took this opportunity to create a clinical trial. (I would call it a study rather than a clinical trial.) I believe that there were 16 patients in this trial. After they stopped Interferon, half of them maintained their PCRU and the other half relapsed. The ones that relapsed went back on Interferon and regained their remission. If anyone out there has a copy of this paper, I would love to see it again. Many of the old timers will remember Jeff Kramer from New Jersey. He was one of those patients who was on Interferon and didn't have any side effects. He reached PCRU and had to be coerced to go off Interferon to see if it was a lasting cure. Jeff has been off any drugs for about 4 years and there is no evidence of CML. I would call this a functional cure. I am also anxious to see any papers that hint that Gleevec and Interferon could be a cure. Maybe something will come out of this years ASH meeting. 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 M Sent: October 16, 2008 9:43 PM Subject: [ ] Re: Toddler with CML Hi Shalyn, I was on interferon prior to starting Gleevec and was so happy to get off interferon, because of terrible side effects, swore never to take interferon again no matter what. I would like to see the published cases showing interferon and Gleevec to be a probable cure. If the dose of interferon was low enough and could work for people who have had good results with Gleevec and be a probable cure, I would definitely give it a try. Thanks, M --- In groups (DOT) <mailto:%40> com, shalyn@... wrote: > > Have not hear much about this case - but if he was my child, I would > transplant if there is a match especially sibling. Otherwise, after > reading so many studies and wishing we had done so -- interferon upon > diagnosis with gleevec shortly after. The published cases of this > shows probable cure.. > > > There is no research of TKIs for the duration that this little guy > would need it- so I would be curious to hear what the specialists are > recommending. > -shalyn > > > Good Morning Everyone > > > > On the Australian Talkbloodcancer Bulletin Board a posting has come > > thru about a little toddler > > > > A little boy who is 2 years just diagnosed with CML > > > > Mum is trying to find out as much info as possible about babies with CML > > > > I thought I would ask you guys, if you have heard of any other > > toddlers with the condition > > and if so, do you know the experience of those families. > > > > Little fellow is on glivec > > > > Uncharted waters if may seem. > > > > Thanks > > Sue (Aussie) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 Hi Zavie, Â Â Sorry to hear interferon left you with CFH - not something anyone needs to deal with alongside CML (or ever!) How does being on gleevec affect the CHF as it's a possible effect as well? This is something we have been researching with all TKI's. Â Your correct on the study though a few things - the patients were not fed up with interferon (at the time of the study, they had not been on interferon)- they were on Gleevec at the time and had reached PCRU for at least 2 years- The group then went off of gleevec, and were monitored monthly (to watch more closely for relapse) Those who did NOT relapse, all had previously taken interferon. Â I have read this paper - would have to search a bit but here is a link to an interview with Dr Nicolini who headed up this study http://www.cmlinfo.org/drnicolini.html[1] I am also very eager to hear of what comes out of ASH.. -shalyn > Hi , > > Interferon was pretty nasty to me. It left me with CHF (Congestive Heart > Failure). I found out later that CHF was one of the known side effects of > Interferon. > > I have only ever seen one paper that talks about Interferon as a cure for > CML. It was a French study and I am still looking for the actual paper. Let > me describe what I remember. > > First of all, it wasn't a proper clinical trial to see if Interferon was a > cure for CML. What happened is that a number of patients (French) were so > fed up with the Interferon side effects that they told their doctor that > they wanted off Interferon. They way they put it was that they would rather > take their chances with nothing than continue on Interferon. > > The doctor then took this opportunity to create a clinical trial. (I would > call it a study rather than a clinical trial.) I believe that there were 16 > patients in this trial. After they stopped Interferon, half of them > maintained their PCRU and the other half relapsed. The ones that relapsed > went back on Interferon and regained their remission. > > If anyone out there has a copy of this paper, I would love to see it again. > > Many of the old timers will remember Jeff Kramer from New Jersey. He was one > of those patients who was on Interferon and didn't have any side effects. He > reached PCRU and had to be coerced to go off Interferon to see if it was a > lasting cure. Jeff has been off any drugs for about 4 years and there is no > evidence of CML. I would call this a functional cure. > > I am also anxious to see any papers that hint that Gleevec and Interferon > could be a cure. Maybe something will come out of this years ASH meeting. > > 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 > > Â Â _____ > > From: [mailto: ] On Behalf Of M > Sent: October 16, 2008 9:43 PM > > Subject: [ ] Re: Toddler with CML > > Hi Shalyn, > I was on interferon prior to starting Gleevec and was so happy to get > off interferon, because of terrible side effects, swore never to take > interferon again no matter what. > I would like to see the published cases showing interferon and > Gleevec to be a probable cure. If the dose of interferon was low > enough and could work for people who have had good results with > Gleevec and be a probable cure, I would definitely give it a try. > Thanks, > M > > >> >> Have not hear much about this case - but if he was my child, I > would >> transplant if there is a match especially sibling. Otherwise, > after >> reading so many studies and wishing we had done so -- interferon > upon >> diagnosis with gleevec shortly after. The published cases of this >> shows probable cure.. >> >> >> There is no research of TKIs for the duration that this little guy >> would need it- so I would be curious to hear what the specialists > are >> recommending. >> -shalyn >> >> > Good Morning Everyone >> > >> > On the Australian Talkbloodcancer Bulletin Board a posting has > come >> > thru about a little toddler >> > >> > A little boy who is 2 years just diagnosed with CML >> > >> > Mum is trying to find out as much info as possible about babies > with CML >> > >> > I thought I would ask you guys, if you have heard of any other >> > toddlers with the condition >> > and if so, do you know the experience of those families. >> > >> > Little fellow is on glivec >> > >> > Uncharted waters if may seem. >> > >> > Thanks >> > Sue (Aussie) >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 thanks for this articlew. This might make my position with my family stronger to go on the trial with Dr. Talpaz to go off Gleevec. None of them are in favor. they all say, " let the other guy try it first " . I want to be that other guy. From: shalyn@... Date: Thu, 16 Oct 2008 21:41:58 -0700 Subject: RE: [ ] Re: Toddler with CML Hi Zavie, Sorry to hear interferon left you with CFH - not something anyone needs to deal with alongside CML (or ever!) How does being on gleevec affect the CHF as it's a possible effect as well? This is something we have been researching with all TKI's. Your correct on the study though a few things - the patients were not fed up with interferon (at the time of the study, they had not been on interferon)- they were on Gleevec at the time and had reached PCRU for at least 2 years- The group then went off of gleevec, and were monitored monthly (to watch more closely for relapse) Those who did NOT relapse, all had previously taken interferon. I have read this paper - would have to search a bit but here is a link to an interview with Dr Nicolini who headed up this study http://www.cmlinfo.org/drnicolini.html[1] I am also very eager to hear of what comes out of ASH.. -shalyn > Hi , > > Interferon was pretty nasty to me. It left me with CHF (Congestive Heart > Failure). I found out later that CHF was one of the known side effects of > Interferon. > > I have only ever seen one paper that talks about Interferon as a cure for > CML. It was a French study and I am still looking for the actual paper. Let > me describe what I remember. > > First of all, it wasn't a proper clinical trial to see if Interferon was a > cure for CML. What happened is that a number of patients (French) were so > fed up with the Interferon side effects that they told their doctor that > they wanted off Interferon. They way they put it was that they would rather > take their chances with nothing than continue on Interferon. > > The doctor then took this opportunity to create a clinical trial. (I would > call it a study rather than a clinical trial.) I believe that there were 16 > patients in this trial. After they stopped Interferon, half of them > maintained their PCRU and the other half relapsed. The ones that relapsed > went back on Interferon and regained their remission. > > If anyone out there has a copy of this paper, I would love to see it again. > > Many of the old timers will remember Jeff Kramer from New Jersey. He was one > of those patients who was on Interferon and didn't have any side effects. He > reached PCRU and had to be coerced to go off Interferon to see if it was a > lasting cure. Jeff has been off any drugs for about 4 years and there is no > evidence of CML. I would call this a functional cure. > > I am also anxious to see any papers that hint that Gleevec and Interferon > could be a cure. Maybe something will come out of this years ASH meeting. > > 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 M > Sent: October 16, 2008 9:43 PM > > Subject: [ ] Re: Toddler with CML > > Hi Shalyn, > I was on interferon prior to starting Gleevec and was so happy to get > off interferon, because of terrible side effects, swore never to take > interferon again no matter what. > I would like to see the published cases showing interferon and > Gleevec to be a probable cure. If the dose of interferon was low > enough and could work for people who have had good results with > Gleevec and be a probable cure, I would definitely give it a try. > Thanks, > M > > >> >> Have not hear much about this case - but if he was my child, I > would >> transplant if there is a match especially sibling. Otherwise, > after >> reading so many studies and wishing we had done so -- interferon > upon >> diagnosis with gleevec shortly after. The published cases of this >> shows probable cure.. >> >> >> There is no research of TKIs for the duration that this little guy >> would need it- so I would be curious to hear what the specialists > are >> recommending. >> -shalyn >> >> > Good Morning Everyone >> > >> > On the Australian Talkbloodcancer Bulletin Board a posting has > come >> > thru about a little toddler >> > >> > A little boy who is 2 years just diagnosed with CML >> > >> > Mum is trying to find out as much info as possible about babies > with CML >> > >> > I thought I would ask you guys, if you have heard of any other >> > toddlers with the condition >> > and if so, do you know the experience of those families. >> > >> > Little fellow is on glivec >> > >> > Uncharted waters if may seem. >> > >> > Thanks >> > Sue (Aussie) >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
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