Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Hi Penny, HHT (AKA Homoharringtonine or Ceflatonin) is not a new drug, it's actually been around for many years. Do you know if you have the T315I mutation? Gleevec, Sprycel and Tasigna are known to all be ineffective for this particular mutation but some studies are showing that HHT may be effective for it. If you do have the T315I mutation, Sprycel will not help you at all (and may actually cause you more problems down the road). The HHT might be effective so I would encourage you to try the trial if this is your case. Are you eligible for a transplant? Many doctors are still recommending BMT for patients with the T315I mutation. Good luck and let us know how you do, Tracey > > Hello, > I have been on Sprycel for about 6 months. I have been very happy > with my response. Gleevec made me so sick from the side effects and > I developed the mutated gene that stopped it from working so I was > switched to Sprcel. With Sprycel I have had almost none. I still > haven't shown any PC Response but everything else is stable. My > dilemma is this. Out of the blue my Hematologist referred me to the > head of PMH Hematology Dept. and he wants me to go into a trial for a > new drug called HHT. (It has another name but I can't remember it.) > My family and I as was my Family Physician were told that I was doing > well with Sprycel. Not at the level some people achieve after 6 > months but it was working well. If Sprycel is working for me why > should I risk what I have achieved in the last 6 months....feel good, > gained wieght, am able to work part time,blood counts are > stable.....for a drug they know little about that may in fact set me > back in my condition? > Is anyone in the group going to be in the trials for HHT? If so > could you please let me know what made you decide to become involved > in the trial of HHT? > > Thank You > Penny(Lusty Lady) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Hi Penny, Just got back from anniversary and New Year celebrations in Montreal and saw your post along with Tracey and ’s responses. The single best advice I give CML patients is to see one of the CML experts. This is especially true if 400 mg daily of Gleevec doesn’t work for you. has also done that. The reason that you want to see one of the experts is that they have access to all the various trials. In your case, I am guessing that you were referred to Dr. Lipton at PMH. The problem with going there is that he does not have access to all the various CML trials. Barrons, who posts on this list and also participates on our online chats will be on the HHT trial at PMH. I asked him if his doctor suggested the SKI-606 trial. His answer was that PMH does not have that trial and furthermore, it would be difficult for him to travel to get access to SKI-606. The reason I asked about SKI-606 is that a dear friend of mine who failed both Gleevec and Sprycel went on the SKI-606 trial and has done remarkably well … Zero and a 3 log reduction. In your case, I would definitely seek the opinion of Dr. Talpaz. He would be in the best position to evaluate your current progress with Sprycel and suggest another drug if it was necessary. SKI-606 is just one of the many new drugs out there. Only the experts have experience with them all and can guide you. Zavie Zavie (age 69) 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of Lusty Sent: December 28, 2007 11:50 AM Subject: [ ] Sprycel vs HHT Hello, I have been on Sprycel for about 6 months. I have been very happy with my response. Gleevec made me so sick from the side effects and I developed the mutated gene that stopped it from working so I was switched to Sprcel. With Sprycel I have had almost none. I still haven't shown any PC Response but everything else is stable. My dilemma is this. Out of the blue my Hematologist referred me to the head of PMH Hematology Dept. and he wants me to go into a trial for a new drug called HHT. (It has another name but I can't remember it.) My family and I as was my Family Physician were told that I was doing well with Sprycel. Not at the level some people achieve after 6 months but it was working well. If Sprycel is working for me why should I risk what I have achieved in the last 6 months....feel good, gained wieght, am able to work part time,blood counts are stable.....for a drug they know little about that may in fact set me back in my condition? Is anyone in the group going to be in the trials for HHT? If so could you please let me know what made you decide to become involved in the trial of HHT? Thank You Penny(Lusty Lady) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 hello happy new year to every one .I got mutation t3151 and my doctor told me that h.h.t would work for me,,can anyone tell me more about it.i was formally on spycell i few days back i had water removed from my lungs i really felt i was going to die thank God i survived it.als can i know if there is a trial going on this drug.thanks ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 I am a patient at Princess Margaret Hospital in Toronto. I have stopped the sprycel trial and will go on the HHT trial in the middle of January. I do not have the 315I mutation but I have another one. This drug has been around for a long time, at least 10 years. Re: [ ] Sprycel vs HHT hello happy new year to every one .I got mutation t3151 and my doctor told me that h.h.t would work for me,,can anyone tell me more about it.i was formally on spycell i few days back i had water removed from my lungs i really felt i was going to die thank God i survived it.als can i know if there is a trial going on this drug.thanks __________________________________________________________ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi ...I am also going off the Sprycel trial and into the HHT trial at PMH in the middle of January. I do not know yet exactly which mutation I have for sure as no one has told me, but I will find out next visit at PMH. I wish us all good luck with this new drug. Take care Penny > > I am a patient at Princess Margaret Hospital in Toronto. I have stopped the sprycel trial and will go on the HHT trial in the middle of January. I do not have the 315I mutation but I have another one. This drug has been around for a long time, at least 10 years. > Re: [ ] Sprycel vs HHT > > > hello happy new year to every one .I got mutation > t3151 and my doctor told me that h.h.t would work for > me,,can anyone tell me more about it.i was formally on > spycell i few days back i had water removed from my > lungs i really felt i was going to die thank God i > survived it.als can i know if there is a trial going > on this drug.thanks > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > Quote Link to comment Share on other sites More sharing options...
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