Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Bobby you are so funny!! So did you tan????? Sharon T _____ From: [mailto: ] On Behalf Of Bobby Doyle Sent: Tuesday, June 23, 2009 9:06 AM Subject: [ ] Ariad results 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/Interferon/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 23, 2009 Report Share Posted June 23, 2009 I am approaching this tanning business very cautiously. I am a sun baby from the word go, and have hated not being able to sit in the sun for years. I keep trying, I guess Gleevec was the worst drug for trying to get a tan. So far so good, but I am doing it in very small increments. But YES it looks like I will tan. I have to work on it now, because when I see Dr. Talpaz he will go through the roof! I guess most folks would think I am nuts to be almost 80 and still like a tan, but I hate looking like the underbelly of a fish, fat is bad enough, but ghostly white makes it worse!! LOL Bobby On Tue, Jun 23, 2009 at 12:13 PM, Sharon Teichera <onthewtr@...>wrote: > > > Bobby you are so funny!! So did you tan????? > > Sharon T > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of Bobby > Doyle > Sent: Tuesday, June 23, 2009 9:06 AM > <%40> > Subject: [ ] Ariad results > > > 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/Interferon/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 23, 2009 Report Share Posted June 23, 2009 Bobby Me too!!! I love the sun. Being born and raised in Hawaii you can see why!!! I am on Tasigna and tanning beautifully!!! My Dr. knows better then to tell me to stay out of it. I am 66 and at this point I need all the Vitamin D I can get. LOL!!! I am a sun worshipper!!!! We live on the water and boat all the time. 80??? You go Girl!!!!!!! Sharon T _____ From: [mailto: ] On Behalf Of Bobby Doyle Sent: Tuesday, June 23, 2009 9:23 AM Subject: Re: [ ] Ariad results I am approaching this tanning business very cautiously. I am a sun baby from the word go, and have hated not being able to sit in the sun for years. I keep trying, I guess Gleevec was the worst drug for trying to get a tan. So far so good, but I am doing it in very small increments. But YES it looks like I will tan. I have to work on it now, because when I see Dr. Talpaz he will go through the roof! I guess most folks would think I am nuts to be almost 80 and still like a tan, but I hate looking like the underbelly of a fish, fat is bad enough, but ghostly white makes it worse!! LOL Bobby On Tue, Jun 23, 2009 at 12:13 PM, Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net>wrote: > > > Bobby you are so funny!! So did you tan????? > > Sharon T > > _____ > > From: groups (DOT) <mailto:%40> com <%40> [mailto: > groups (DOT) <mailto:%40> com <%40>] On Behalf Of Bobby > Doyle > Sent: Tuesday, June 23, 2009 9:06 AM > groups (DOT) <mailto:%40> com <%40> > Subject: [ ] Ariad results > > > 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/Interferon/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 23, 2009 Report Share Posted June 23, 2009 Hi Bobby, Great news! I hope you continue to do better until you are a big fat " 0 " ! Blessings, Your fellow Buckeye, Don > > 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/Interferon/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 23, 2009 Report Share Posted June 23, 2009 Thanks Don, I have the " big fat " down , now for the " 0 " LOL Bobby On Tue, Jun 23, 2009 at 2:37 PM, Don Adkins <donaldadkins@...>wrote: > > > Hi Bobby, > > Great news! I hope you continue to do better until you are a big fat " 0 " ! > > Blessings, > Your fellow Buckeye, > Don > > > > > > > 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/Interferon/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 23, 2009 Report Share Posted June 23, 2009 Hi Bobby, This is great news. I don't have a BMA until my 3rd cycle. But until I hope they do a FISH testing, or something to see if it's working. Did you get any rashes? I have some spots but it could be " prickly heat " - it is soooooo darn hot here in Houston. haha. God Bless, Jackie S. From: Bobby Doyle <rmcd1929@...> Subject: [ ] Ariad results 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 23, 2009 Report Share Posted June 23, 2009 No Jackie, no rashes, yet. I wonder why they don't do a bma/bmb in the beginning of a new trial, unless you have had a recent one? I remember Houston in July, August and September and my dear, they can keep it. I had an apartment with a pool, and used it before 9 am.! My friend who lives there told me I would not need a pool at that time of the year, and I thought, gee, that's exactly when I think I would want one. NOT. It was out of the pool at 9 and into the air conditioned apartment. I hate heat unless I am in the water. I just got out of our pool, so far the sun tan is working for me, but I'm being very careful. Do you feel any different on 30 mg of Ariad, than you do without it? No nausea, headache? I hope not, so far this seems like a pretty nice drug, I pray it keeps going that way. Sprycel worked for me too, and I loved it, for 1 1/2 years, then PE hit. Boo Hiss! Have great week, Bobby On Tue, Jun 23, 2009 at 3:36 PM, jackie schneider <jschneider008@...>wrote: > > > Hi Bobby, > This is great news. I don't have a BMA until my 3rd cycle. But until I hope > they do a FISH testing, or something to see if it's working. Did you get any > rashes? I have some spots but it could be " prickly heat " - it is soooooo > darn hot here in Houston. haha. > God Bless, > Jackie S. > > > > From: Bobby Doyle <rmcd1929@... <rmcd1929%40gmail.com>> > > Subject: [ ] Ariad results > <%40> > 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 23, 2009 Report Share Posted June 23, 2009 That long wait for grub is pretty daunting, lol! That aside, this sounds pretty darned good. Are we getting to the point where drugs other than Gleevec will be consider first line drugs, I wonder? From: rmcd1929@... Date: Tue, 23 Jun 2009 12:06:20 -0400 Subject: [ ] Ariad results 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/Interferon/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 24, 2009 Report Share Posted June 24, 2009 I would doubt that, Gleevec has been proven for some time, it will take years to have another drug replace it, I think. I am not counting on this drug, as I was on Sprycel for 1 1/2 years with no side effects, then the big old pleural effusions struck and that was the end of Sprycel for me. So, it's wait and see.......Bobby On Tue, Jun 23, 2009 at 4:46 PM, Rosen Lum <rrosenlum@...>wrote: > > That long wait for grub is pretty daunting, lol! That aside, this sounds > pretty darned good. Are we getting to the point where drugs other than > Gleevec will be consider first line drugs, I wonder? > > > From: rmcd1929@... > Date: Tue, 23 Jun 2009 12:06:20 -0400 > Subject: [ ] Ariad results > > > > > > > > > > > > > > > > > > > > > > > > > > > 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/Interferon/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 24, 2009 Report Share Posted June 24, 2009 Sprycel worked for me too, and I loved it, for 1 1/2 years, then PE hit. Boo Hiss! Have great week, Bobby What did you mean by this statement Bobby > > 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 24, 2009 Report Share Posted June 24, 2009 What do I mean by: then PE hit? PE is short for pleural effusion, fluid building up in the lining if the lungs. You get very short of breath, there is usually pain on the side of the affected lung. they treat it with presnisone, if it gets bad they do a thoracentesis, most unpleasant, they took 1 1/2 liters fluid out. They put a needle into the area and draw out the fluid. And that ended the Sprycel trial for me. That is why I hold my breath on this Ariad trial, just hoping and praying nothing like that happens, because I really like this drug. Bobby On Tue, Jun 23, 2009 at 7:18 PM, mary mary <chatgal2000@...> wrote: > > > Sprycel worked for me too, and I loved it, for 1 1/2 years, then > PE hit. Boo Hiss! Have great week, Bobby > > What did you mean by this statement Bobby > > > > > > 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 24, 2009 Report Share Posted June 24, 2009 I just had a bma in June so no need for another one, Besides the bone pain, which is much better now, I haven't had any other side effects. No nausea or stomach problems. Yep its great so far. I just pray it works! God Bless, 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 24, 2009 Report Share Posted June 24, 2009 Thank you for explaining and I hope that the trial is very sucessful for you. I may be joining the UCSF Ariad trial. I am awaiting a referal to see Dr. shah > > > > 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 24, 2009 Report Share Posted June 24, 2009 GOOD LUCK !! On Wed, Jun 24, 2009 at 12:08 PM, mary mary <chatgal2000@...> wrote: > > > Thank you for explaining and I hope that the trial is very sucessful for > you. I may be joining the UCSF Ariad trial. I am awaiting a referal to see > Dr. shah > > > > > > > > > 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 24, 2009 Report Share Posted June 24, 2009 Bobby, What great news! Thank you for sharing that bit of inspiration. You must be elated! Little secret--my big hobby is horseback riding, which entails a lot of time in the sun. I've been at a show this week, and managed to get quite tan, without burning! Doc didn't say anything today when he saw me, so I figure what he doesn't know doesn't hurt! (From one sun-worshiper to another) Beth [ ] Ariad results 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/Interferon/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 24, 2009 Report Share Posted June 24, 2009 I've had the same experience as Jackie--just bone pain, which has pretty much cleared up. No other issues. My wbc have gone up a little, but doc says not to worry about that, it is an insignificant increase. I, of course, am panicking a bit today, but working on just breathing through it.. And, I too am praying it works! Beth [ ] 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 24, 2009 Report Share Posted June 24, 2009 , I am a patient of Dr. Shah's and he is great! Hope you get in! Beth [ ] 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 24, 2009 Report Share Posted June 24, 2009 I have heard very good things about him and am looking forward to meeting him and checking it all out. What was your deciding factor to join the trial? > > > > 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 24, 2009 Report Share Posted June 24, 2009 , For me, I had nothing to lose and everything to gain. I had essentially signed up in my mind even before my appointment. I have the T315I mutation, which makes me resistant to all the drugs on the market. If this drug works, I will be able to avoid transplant. Beth [ ] 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 24, 2009 Report Share Posted June 24, 2009 I am waiting to see if I have the same T3151 as well and Dr. Shah said that if I do it's the trial or look into a transplant option. Did you ever reach CCR before discovering the mutant? > > > > 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 Hi Beth, Just got my answer! Catching up on emails myself. 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 Hi Bobby - Awesome, awesome news! Send those results me and Beth's way.....so anxious to have them done. I'm not sure when that will be, but my 28th day is July 12th so hopefully at that point Dr Cortes will ask for something anyway. Enjoy the sun - it makes us feel so good. We know our own limits so we know you'll be safe. God Bless, Jackie From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Ariad results Date: Wednesday, June 24, 2009, 2:11 PM Bobby, What great news! Thank you for sharing that bit of inspiration. You must be elated! Little secret--my big hobby is horseback riding, which entails a lot of time in the sun. I've been at a show this week, and managed to get quite tan, without burning! Doc didn't say anything today when he saw me, so I figure what he doesn't know doesn't hurt! (From one sun-worshiper to another) Beth [ ] Ariad results 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 Hi , No, I never reached CCR. Let me know how it goes with Dr. Shah. I find him very compassionate and knowledgeable... Beth [ ] 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 Thank you Beth, I just found out that I do not have the T3151 mutation or any other at this point so I may not be looking into the trial as of yet. But, I am not in CCR, which is where I should be, so Sprycel may not be doing me justice either. I am curious as to how long I can go without CCR on this drug before I progress and I am not even sure I will progress. Do you have any idea from anything Dr. Shah may have told you? > > > > 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 Yeh !! No mutation so you have other options. Ski 606, Tasigna, I'm sure there are many more that others can offer you. I'm sorry you haven't reached CCR. Dr Shah will take good care of you. I hope you get his referral soon. God Bless, 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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