Don't know about left over meds but I was On sprycel for about 6 years. Good luck
Prayers & Blessings Jeanie π π π π π π π π π π π π . 18,s > On Feb 27, 2015, at 10:58 PM, "'BOOGIE_WOOGIE' via CMLHope" > <[email protected]> wrote: > > Hi everyone....... > > My dr took me off Gleevec a year ago am on Sprycel now and am doing well. > I have two bottles of Gleevec unopened...any suggestions what to do with the > leftover Gleevec???? > BOOGIE WOOGIE > > > On Friday, February 27, 2015 2:15 AM, "[email protected]" > <[email protected]> wrote: > > > [email protected] Google Groups > Topic digest > View all topics > Dr. Druker and Marty - 2 Updates > Doctor's Visit - 5 Updates > Dr. Druker and Marty > Susan Rosenthal <[email protected]>: Feb 26 10:28PM -0500 > > Susan: > > I do not remember meeting you or Sharon. However, I was chosen by the LLS to > introduce himβ¦I thought that was a real honor. > > He is as awesome as you saw him as he is a doctor. > > Every having CML does indeed have their own story to tell, that is for sure. > > Hugs, > Susan > ------------------------------------------------------------------------------------------------------------------------------------- > > Marty: > > Thinking of youβ¦only 18's for you!!! > > Hugs, > Susan > Joyce Mesnarich <[email protected]>: Feb 27 12:37AM -0600 > > I may have missed a post, but are we sure that Marty indeed got his new > kidney? I'm still praying that he did and that things are going well. > Joyce in IL > > > On Feb 26, 2015, at 9:28 PM, 'Susan Rosenthal' via CMLHope wrote: > > Back to top > Doctor's Visit > Marcie Goodman <[email protected]>: Feb 26 11:19AM -0500 > > Hi Beth, > > I think Marty had the transplant and I'm praying all is going well for him. > How are you feeling? You are such a positive, joyful person and I always look > forward to your posts. > > Best wishes, > > Marcie > > Sent from my iPad > > [email protected]: Feb 26 02:59PM -0500 > > HI all, I agree with Marcie, and Sherri. I think the kidney was a match or we > would have heard...so lets all keep sending up lots of prayers and light and > joy and laughter to our favorite "18"s man...he's been through a lot waiting > for this kidney and these things are not easy......but he is a trooper with a > fantastic attitude, And I we need him... > > > I am hanging in there, thanks for asking, struggling, but feel closer to some > answers coming my way of what is going on and how to treat it....should know > more in the next couple of weeks. Not doing BCR until March 16th, so no > results until the 26th or so...will feel much better when I have clarity that > at least that is going back in the right direction. All of you stay well. > Take good care and stay close. > 18's > Love, Beth > > > > -----Original Message----- > From: 'Marcie Goodman' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Thu, Feb 26, 2015 10:49 am > Subject: Re: [CMLHope] Doctor's Visit > > > > Hi Beth, > > > > > I think Marty had the transplant and I'm praying all is going well for him. > How are you feeling? You are such a positive, joyful person and I always look > forward to your posts. > > > > > Best wishes, > > > > > Marcie > > Sent from my iPad > > > On Feb 26, 2015, at 5:01 AM, sherri swanson < [email protected]> > wrote: > > > > > > > Hi Beth, > > > > I was think the same thing you were. I've been sending all the good thoughts > I could find to Marty and since we've not heard from him, it must have been a > match. Let's just keep praying that the kidney was a match and everything > goes well. He is such a wonderful person. > > > > Have a good day. > > > > L'chaim, > > > > Sherri > > > > > > On Wed, Feb 25, 2015 at 4:37 PM, bkbarney via CMLHope > <[email protected]> wrote: > > Hi all. I think our not hearing from Marty, is a sign that the kidney was a > match. otherwise he would have posted that it did not work out and he is > still waiting? Does anybody think the same? If this is true,then he would > have had his surgery...so lets all keep sending healing energy and good > thoughts, love, his way. > > > > I am wondering, if anyone who has been on sprycel, has developed any other > forms of cancer while on it? Thanks, Beth > > > > -----Original Message----- > From: ICANDOALLTTC via CMLHope < [email protected]> > To: cmlhope < [email protected]> > Sent: Wed, Feb 25, 2015 8:10 am > Subject: Re: [CMLHope] Doctor's Visit > > > > > Hi Richard and good to hear from you. > > I had the worst side effects on Gleevec than any other TKI I have taken, > except for the one I am on now, Ponatinib. Boils, cramps, nausea and etc. Yes > and eye bleeds. Also and infected eye that never seemed to heal. Ponatinib is > hitting me with everything its got. I am seeing lights that aren't there and > things in my side vision that aren't there. When I close my eyes at night, > the things are still there. I was never on LSD but this feels like something > like it. Going for blood check up tomorrow; pray that it comes out ok. > > Has anyone heard from Marty? Pray that he is ok. > > Blessings > > Jeanie<3 > > > > > In a message dated 2/24/2015 1:09:55 P.M. Eastern Standard Time, > [email protected] writes: > > Richard, that is great news! I pray that the Gleevec will continue to work > well and the side effects will stay away. So nice to hear good tidings! Marcie > > > > -----Original Message----- > From: Richard H < [email protected]> > To: cmlhope < [email protected]> > Sent: Tue, Feb 24, 2015 12:17 pm > Subject: [CMLHope] Doctor's Visit > > > > > > > > I received my test results yesterday. It shows a major molecular reduction > down to 1.579% on the international scale. The side effects (a long list) are > minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps > from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I > had gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec > and it has been great so far. I have changed when I take Gleevec from evening > to midday, as it was causing indigestion at bedtime. I have been able > maintain my weight and have not shown any weight increase on 300mg Gleevec. > > > > > Richard H. > > Dxd 2/2003 > 400mg Gleevec 3/2003 > > Undetectable 11/03 > > RT-PCR negative 11/04 > > QT-PCR .003 11/05 > > RBC 8. > > Gleevec Vacation 11/06-6/07 > > Iron infusion 11/06 > > Transfusions 12/06-5/07 > > QT-PCR .007 > > Gleevec 1/08 -5/08 > > Procrit 8/08-11/08 > > Gleevec Vacation 7/08-12/11/14 > > QT-PCR .003 4/09 > > QT-PCR .0015 6/09 > > QT-PCR .0021 9/09 > > QT-PCR .0028 1/10 > > QT-PCR .001 4/10 > > QT-PCR .00468 10/10 > > QT-PCR 1.049% 2/11 > > QT-PCR .0612% 8/11 > > QT-PCR 2.616 % 2/12 > > QT-PCR 2.410% 8/12 > > RT-PCR 9.183% 4/13 > > RT-PCR 4.57% 6/13 > > RT-PCR 10.183% 10/13 > > RT-PCR 10.577% 2/14 > > RT-PCR 16.050% 5/14 > > RT-PCR Approx. 20% 10/14 > > Restarted 400mg Gleevec 12/11/14 > > Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days > > Started 300 mg Gleevec 1/27/14 > > QT-PCR 1.579% 2/15 > > > > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > Susan Zimmerman <[email protected]>: Feb 26 03:12PM -0500 > > So happy for you, Richard!!! Fuzzy vision is weird, never had that > myself.....but those leg and foot cramps, yeah! Now with my bosulif and only > on 100 mg, virtually no side effects. Your turn will come, I'm sure of it. > Either they'll find a real cure or you'll get to bosulif eventually. Even > going to 200 mg of gleevec would be great!!! I wish you the best for sure!!!! > > > 18's, > Susan Z > -----Original Message----- > From: Richard H <[email protected]> > To: cmlhope <[email protected]> > Sent: Tue, Feb 24, 2015 12:17 pm > Subject: [CMLHope] Doctor's Visit > > > > > > > > I received my test results yesterday. It shows a major molecular reduction > down to 1.579% on the international scale. The side effects (a long list) are > minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps > from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I > had gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec > and it has been great so far. I have changed when I take Gleevec from evening > to midday, as it was causing indigestion at bedtime. I have been able > maintain my weight and have not shown any weight increase on 300mg Gleevec. > > > > > Richard H. > > Dxd 2/2003 > 400mg Gleevec 3/2003 > > Undetectable 11/03 > > RT-PCR negative 11/04 > > QT-PCR .003 11/05 > > RBC 8. > > Gleevec Vacation 11/06-6/07 > > Iron infusion 11/06 > > Transfusions 12/06-5/07 > > QT-PCR .007 > > Gleevec 1/08 -5/08 > > Procrit 8/08-11/08 > > Gleevec Vacation 7/08-12/11/14 > > QT-PCR .003 4/09 > > QT-PCR .0015 6/09 > > QT-PCR .0021 9/09 > > QT-PCR .0028 1/10 > > QT-PCR .001 4/10 > > QT-PCR .00468 10/10 > > QT-PCR 1.049% 2/11 > > QT-PCR .0612% 8/11 > > QT-PCR 2.616 % 2/12 > > QT-PCR 2.410% 8/12 > > RT-PCR 9.183% 4/13 > > RT-PCR 4.57% 6/13 > > RT-PCR 10.183% 10/13 > > RT-PCR 10.577% 2/14 > > RT-PCR 16.050% 5/14 > > RT-PCR Approx. 20% 10/14 > > Restarted 400mg Gleevec 12/11/14 > > Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days > > Started 300 mg Gleevec 1/27/14 > > QT-PCR 1.579% 2/15 > > > > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > Icandoallttc <[email protected]>: Feb 26 04:04PM -0500 > > Hi all > Got my blood results and check up today. Everything is good. Got some bad > side effects from ponatinib. Vision problems and headaches the worst. Rough > dry skin on thighs and some skin peeling. Just finished my 30 day supply of > meds. No joint pain or cramps. Praying for Marty--hope we hear soon. > > Prayers & Blessings Jeanie π π π π π π π π π π π π . 18,s > > [email protected]: Feb 26 04:19PM -0500 > > Jeanie, That's great news that the blood work shows everything is good. Hard > news that your side effects are so hard. vision problems and headaches....so > sorry you are struggling, and the skin issues... still glad you are not > having any joint cramps..that's a plus...this is only the beginning...perhaps > as you adjust to the medicine, and they monitor you, over time, you can feel > better....still, I am so glad it's working for you!!! Yippee! > > > Thinking of Marty too...such brave warriors..... > > > take care, > > > Beth. > > > > -----Original Message----- > From: 'Icandoallttc' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Thu, Feb 26, 2015 3:04 pm > Subject: Re: [CMLHope] Doctor's Visit > > > > Hi all > > Got my blood results and check up today. Everything is good. Got some bad > side effects from ponatinib. Vision problems and headaches the worst. Rough > dry skin on thighs and some skin peeling. Just finished my 30 day supply of > meds. No joint pain or cramps. Praying for Marty--hope we hear soon. > > Prayers & Blessings Jeanie > \uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20. > 18,s > > > On Feb 26, 2015, at 3:12 PM, "'Susan Zimmerman' via CMLHope" < > [email protected]> wrote: > > > > > So happy for you, Richard!!! Fuzzy vision is weird, never had that > myself.....but those leg and foot cramps, yeah! Now with my bosulif and only > on 100 mg, virtually no side effects. Your turn will come, I'm sure of it. > Either they'll find a real cure or you'll get to bosulif eventually. Even > going to 200 mg of gleevec would be great!!! I wish you the best for sure!!!! > > > 18's, > > Susan Z > > -----Original Message----- > From: Richard H < [email protected]> > To: cmlhope < [email protected]> > Sent: Tue, Feb 24, 2015 12:17 pm > Subject: [CMLHope] Doctor's Visit > > > > > > > > I received my test results yesterday. It shows a major molecular reduction > down to 1.579% on the international scale. The side effects (a long list) are > minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps > from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I > had gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec > and it has been great so far. I have changed when I take Gleevec from evening > to midday, as it was causing indigestion at bedtime. I have been able > maintain my weight and have not shown any weight increase on 300mg Gleevec. > > > > > Richard H. > > Dxd 2/2003 > 400mg Gleevec 3/2003 > > Undetectable 11/03 > > RT-PCR negative 11/04 > > QT-PCR .003 11/05 > > RBC 8. > > Gleevec Vacation 11/06-6/07 > > Iron infusion 11/06 > > Transfusions 12/06-5/07 > > QT-PCR .007 > > Gleevec 1/08 -5/08 > > Procrit 8/08-11/08 > > Gleevec Vacation 7/08-12/11/14 > > QT-PCR .003 4/09 > > QT-PCR .0015 6/09 > > QT-PCR .0021 9/09 > > QT-PCR .0028 1/10 > > QT-PCR .001 4/10 > > QT-PCR .00468 10/10 > > QT-PCR 1.049% 2/11 > > QT-PCR .0612% 8/11 > > QT-PCR 2.616 % 2/12 > > QT-PCR 2.410% 8/12 > > RT-PCR 9.183% 4/13 > > RT-PCR 4.57% 6/13 > > RT-PCR 10.183% 10/13 > > RT-PCR 10.577% 2/14 > > RT-PCR 16.050% 5/14 > > RT-PCR Approx. 20% 10/14 > > Restarted 400mg Gleevec 12/11/14 > > Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days > > Started 300 mg Gleevec 1/27/14 > > QT-PCR 1.579% 2/15 > > > > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > Back to top > You received this digest because you're subscribed to updates for this group. > You can change your settings on the group membership page. > To unsubscribe from this group and stop receiving emails from it send an > email to [email protected]. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
