Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Hi & Beth, When were you two diagnosed? You probably have posted all that info but I don't remember. Dr Shah is very well-liked. You two are in good hands. Best to you both. Jackie > > > > From: Bobby Doyle <rmcd1929gmail (DOT) com <rmcd1929%40gmail. com>> > > > > Subject: [ ] Ariad results > > groups (DOT) com <%40groups .com> > > Date: Tuesday, June 23, 2009, 11:06 AM > > > > Hi Everyone, especially Jackie and Beth....I have some pretty good QPCR > > results. They don't always get a good draw, so when my trial nurse called > > me she explained to me, the last good bone marrow draw they had prior to > > the > > last one, was Jan. it was 5.02 The one they did on June 6, is .109. I > > have been on Ariad since April 13. I am thinking this is pretty > > fantastic, Please keep in mind, I am on 15 mg, and have NO side effects. > > I asked if I was doing so well on 15, will they still put me on 30mg and > > she > > said, yes, because it is a trial, 28 days after they start someone, > Jackie > > and Beth, on 30, they will put me on 30. > > On another note, I put on some sun tan lotion and sat in the sun and went > > in > > the pool this morning for 1 1/2 hours. I exercised my chubby little legs > > most of the time, but basically wanted to see if I would tan and how I > > would > > tan on this drug. This is of course without telling or asking permission > > from Dr. Talpaz, as he always says NO. > > The most difficult time I have with Ariad is eating. I am always hungry > and > > have to eat a light breakfast, wait two hours, take the pills and wait > two > > more hours. It's the last two that are killing me. Then I get too hungry > > and cram anything I can get my hands on into my face! They just changed > > that, it was wait one hour after taking the pills, now it is 2. > > But really, I'm not complaining, I am happy as a pig in a pile of mud > with > > this trial and wish the very same good results for Jackie and Beth. > > Blessings, Bobby > > > > -- > > a Doyle/dob 1929 > > DX /CML/1995/Interfero n/hydrea > > 2/00 - Gleevec Trial, OHSU, Dr. Druker > > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > > 3/05 - CCR > > 12/07 - Ended trial due to Pleural Effusion > > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > > #840 Zavie's Zero Club #840 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 I was diagnosed July/04 --- Gleevec to start for 3.5 yrs and have been on Sprycel 1.5 > > > > From: Bobby Doyle <rmcd1929gmail (DOT) com <rmcd1929%40gmail. com>> > > > > Subject: [ ] Ariad results > > groups (DOT) com <%40groups .com> > > Date: Tuesday, June 23, 2009, 11:06 AM > > > > Hi Everyone, especially Jackie and Beth....I have some pretty good QPCR > > results. They don't always get a good draw, so when my trial nurse called > > me she explained to me, the last good bone marrow draw they had prior to > > the > > last one, was Jan. it was 5.02 The one they did on June 6, is .109. I > > have been on Ariad since April 13. I am thinking this is pretty > > fantastic, Please keep in mind, I am on 15 mg, and have NO side effects. > > I asked if I was doing so well on 15, will they still put me on 30mg and > > she > > said, yes, because it is a trial, 28 days after they start someone, > Jackie > > and Beth, on 30, they will put me on 30. > > On another note, I put on some sun tan lotion and sat in the sun and went > > in > > the pool this morning for 1 1/2 hours. I exercised my chubby little legs > > most of the time, but basically wanted to see if I would tan and how I > > would > > tan on this drug. This is of course without telling or asking permission > > from Dr. Talpaz, as he always says NO. > > The most difficult time I have with Ariad is eating. I am always hungry > and > > have to eat a light breakfast, wait two hours, take the pills and wait > two > > more hours. It's the last two that are killing me. Then I get too hungry > > and cram anything I can get my hands on into my face! They just changed > > that, it was wait one hour after taking the pills, now it is 2. > > But really, I'm not complaining, I am happy as a pig in a pile of mud > with > > this trial and wish the very same good results for Jackie and Beth. > > Blessings, Bobby > > > > -- > > a Doyle/dob 1929 > > DX /CML/1995/Interfero n/hydrea > > 2/00 - Gleevec Trial, OHSU, Dr. Druker > > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > > 3/05 - CCR > > 12/07 - Ended trial due to Pleural Effusion > > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > > #840 Zavie's Zero Club #840 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 I was diagnosed 4/04 - very close to you. Have you ever reached ccr? I haven't. Ariad is my 5th drug. Why did the dr switch you to sprycle? Thanks, Jackie S. > > > > From: Bobby Doyle <rmcd1929gmail (DOT) com <rmcd1929%40gmail. com>> > > > > Subject: [ ] Ariad results > > groups (DOT) com <%40groups .com> > > Date: Tuesday, June 23, 2009, 11:06 AM > > > > Hi Everyone, especially Jackie and Beth....I have some pretty good QPCR > > results. They don't always get a good draw, so when my trial nurse called > > me she explained to me, the last good bone marrow draw they had prior to > > the > > last one, was Jan. it was 5.02 The one they did on June 6, is .109. I > > have been on Ariad since April 13. I am thinking this is pretty > > fantastic, Please keep in mind, I am on 15 mg, and have NO side effects. > > I asked if I was doing so well on 15, will they still put me on 30mg and > > she > > said, yes, because it is a trial, 28 days after they start someone, > Jackie > > and Beth, on 30, they will put me on 30. > > On another note, I put on some sun tan lotion and sat in the sun and went > > in > > the pool this morning for 1 1/2 hours. I exercised my chubby little legs > > most of the time, but basically wanted to see if I would tan and how I > > would > > tan on this drug. This is of course without telling or asking permission > > from Dr. Talpaz, as he always says NO. > > The most difficult time I have with Ariad is eating. I am always hungry > and > > have to eat a light breakfast, wait two hours, take the pills and wait > two > > more hours. It's the last two that are killing me. Then I get too hungry > > and cram anything I can get my hands on into my face! They just changed > > that, it was wait one hour after taking the pills, now it is 2. > > But really, I'm not complaining, I am happy as a pig in a pile of mud > with > > this trial and wish the very same good results for Jackie and Beth. > > Blessings, Bobby > > > > -- > > a Doyle/dob 1929 > > DX /CML/1995/Interfero n/hydrea > > 2/00 - Gleevec Trial, OHSU, Dr. Druker > > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > > 3/05 - CCR > > 12/07 - Ended trial due to Pleural Effusion > > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > > #840 Zavie's Zero Club #840 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 I was having side effects and my liver counts were up. I am feeling quite dense these days because I thought that I had been in CCR but I am going to meet with my Dr. soon and will ask this question. I am having difficulty with sprycel too; can tolerate for a few months and then my body goes toxic and achy and long sleepless nights so I went from 70mgX2dly to 100mgX1dly this last few weeks by Dr. Shah's recommendation and for the first few days it was great but I am getting all those symptoms back much sooner than I expected. > > > > From: Bobby Doyle <rmcd1929gmail (DOT) com <rmcd1929%40gmail. com>> > > > > Subject: [ ] Ariad results > > groups (DOT) com <%40groups .com> > > Date: Tuesday, June 23, 2009, 11:06 AM > > > > Hi Everyone, especially Jackie and Beth....I have some pretty good QPCR > > results. They don't always get a good draw, so when my trial nurse called > > me she explained to me, the last good bone marrow draw they had prior to > > the > > last one, was Jan. it was 5.02 The one they did on June 6, is .109. I > > have been on Ariad since April 13. I am thinking this is pretty > > fantastic, Please keep in mind, I am on 15 mg, and have NO side effects. > > I asked if I was doing so well on 15, will they still put me on 30mg and > > she > > said, yes, because it is a trial, 28 days after they start someone, > Jackie > > and Beth, on 30, they will put me on 30. > > On another note, I put on some sun tan lotion and sat in the sun and went > > in > > the pool this morning for 1 1/2 hours. I exercised my chubby little legs > > most of the time, but basically wanted to see if I would tan and how I > > would > > tan on this drug. This is of course without telling or asking permission > > from Dr. Talpaz, as he always says NO. > > The most difficult time I have with Ariad is eating. I am always hungry > and > > have to eat a light breakfast, wait two hours, take the pills and wait > two > > more hours. It's the last two that are killing me. Then I get too hungry > > and cram anything I can get my hands on into my face! They just changed > > that, it was wait one hour after taking the pills, now it is 2. > > But really, I'm not complaining, I am happy as a pig in a pile of mud > with > > this trial and wish the very same good results for Jackie and Beth. > > Blessings, Bobby > > > > -- > > a Doyle/dob 1929 > > DX /CML/1995/Interfero n/hydrea > > 2/00 - Gleevec Trial, OHSU, Dr. Druker > > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > > 3/05 - CCR > > 12/07 - Ended trial due to Pleural Effusion > > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > > #840 Zavie's Zero Club #840 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 I was diagnosed June 18, 2008. I started the ariad trial almost a year to the day, and found out about the donor match a year to the day! Beth Sent from my iPhone On Jun 25, 2009, at 8:50 AM, jackie schneider <jschneider008@...> wrote: > > > Hi & Beth, > When were you two diagnosed? You probably have posted all that info > but I don't remember. > Dr Shah is very well-liked. You two are in good hands. Best to you > both. > Jackie > > > > > > > > From: Bobby Doyle <rmcd1929gmail (DOT) com <rmcd1929%40gmail. com>> > > > > > > Subject: [ ] Ariad results > > > groups (DOT) com <%40groups .com> > > > Date: Tuesday, June 23, 2009, 11:06 AM > > > > > > Hi Everyone, especially Jackie and Beth....I have some pretty > good QPCR > > > results. They don't always get a good draw, so when my trial > nurse called > > > me she explained to me, the last good bone marrow draw they had > prior to > > > the > > > last one, was Jan. it was 5.02 The one they did on June 6, is . > 109. I > > > have been on Ariad since April 13. I am thinking this is pretty > > > fantastic, Please keep in mind, I am on 15 mg, and have NO side > effects. > > > I asked if I was doing so well on 15, will they still put me on > 30mg and > > > she > > > said, yes, because it is a trial, 28 days after they start > someone, > > Jackie > > > and Beth, on 30, they will put me on 30. > > > On another note, I put on some sun tan lotion and sat in the sun > and went > > > in > > > the pool this morning for 1 1/2 hours. I exercised my chubby > little legs > > > most of the time, but basically wanted to see if I would tan and > how I > > > would > > > tan on this drug. This is of course without telling or asking > permission > > > from Dr. Talpaz, as he always says NO. > > > The most difficult time I have with Ariad is eating. I am always > hungry > > and > > > have to eat a light breakfast, wait two hours, take the pills > and wait > > two > > > more hours. It's the last two that are killing me. Then I get > too hungry > > > and cram anything I can get my hands on into my face! They just > changed > > > that, it was wait one hour after taking the pills, now it is 2. > > > But really, I'm not complaining, I am happy as a pig in a pile > of mud > > with > > > this trial and wish the very same good results for Jackie and > Beth. > > > Blessings, Bobby > > > > > > -- > > > a Doyle/dob 1929 > > > DX /CML/1995/Interfero n/hydrea > > > 2/00 - Gleevec Trial, OHSU, Dr. Druker > > > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > > > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > > > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > > > 3/05 - CCR > > > 12/07 - Ended trial due to Pleural Effusion > > > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > > > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > > > #840 Zavie's Zero Club #840 > > > > > > Quote Link to comment Share on other sites More sharing options...
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