Jeanie,. I know this is what you need. And I am deeply glad that there is such a drug that can help you and others who become resistant to some of the other TKI's. Myprayer for you is if the Ponatinib can kick your cancer to the curb, you may be able to take a lower dose and maintain. Those on lower doses of POnatinib seem to fair better regarding side effect profile. I hope that can be in your future. For now, breath in and out and try, if you can and feel up to it, to do some things that relax you, tickle your funny bone, just trying to find moments that uplift you...to help you through this rough patch. I am praying for you...big hug. Beth
-----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Mar 12, 2015 2:47 pm Subject: Re: [CMLHope] Moffit visit Hi Beth and thanks. Doctor says ponatinib is very toxic but I had no choice. My skin is peeling and my hair is falling out just like it did on gleevec. Thanks for the prayers and uplifts. I hope you have a good doctors visit. 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 Mar 12, 2015, at 2:30 PM, bkbarney via CMLHope < [email protected]> wrote: Jeanie, so glad blood is looking good. Hope platelets stay around 150 for you..and that you start to feel better on the drug. I go to do my BCR abl on Monday. B Susan, oh no...I will being seeing Dr. Druker on the 23rd. Darn, of course, I will be in Oregon while you are in Chicago...murphies law....next time then! if my schedule for Dr. Druker changes, I will let you know. Warm regards, 18'sBeth -----Original Message----- From: 'Icandoallttc' via CMLHope < [email protected]> To: cmlhope < [email protected]> Sent: Thu, Mar 12, 2015 9:37 am Subject: [CMLHope] Moffit visit Blood is good. Platelets dropping to 133. Rather them be low than high. Hope everyone is good today. 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 Mar 11, 2015, at 6:26 PM, "'Susan Zimmerman' via CMLHope" < [email protected]> wrote: Dear Beth, I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour and half or so....can you meet after that? My husband usually brings me, so you can meet him, too! Where would you like to meet? I will be at Northwestern which is downtown, so you name it! Dr. Druker....you go out there when in April? I'm happy you get to go....my friend Sharon Kraby also flies from Florida to him regularly..... Marcie, thanks for the shout-out! Sure hope your bone pain is gone and you are in the pink again.....is it? Do I remember you lowered your mg of gleevec? That should help, did it? 18's, Susan F. Zimmerman -----Original Message----- From: bkbarney via CMLHope < [email protected]> To: cmlhope < [email protected]> Sent: Wed, Mar 11, 2015 1:34 pm Subject: Re: [CMLHope] CML visit Susan, I would love to meet with you for a tea or coffee while you are in Chicago if you are up for it. Let me know. I am going to Dr. Druker in April, hopefully our trip times won't overlap. Thanks for your prayers..always so helpful...and Marcie, you have a great day too! 18"s Beth -----Original Message----- From: 'Marcie Goodman' via CMLHope < [email protected]> To: cmlhope < [email protected]> Sent: Tue, Mar 10, 2015 9:28 pm Subject: Re: [CMLHope] CML visit Susan, So good to hear from you and I know how good it is to see the snow melt away. Take good care and thanks for always lifting us up in prayer. Marcie Sent from my iPhone On Mar 10, 2015, at 10:10 PM, 'Susan Zimmerman' via CMLHope < [email protected]> wrote: Dear Greenie, Thinking of you and hoping for a good report. This is just another small bump in the road. I am praying extra for you. God bless and keep us posted. I am thinking about all of you and pray for good news. The great news is we get up every day and I really think we might see Spring soon! All our snow is melting FAST here in northern Indiana....50 for most of the week. My dog is elated she can roam the dead grass instead of the snow again! Beth will await your reports' findings as well. I don't go to Chicago until mid-April for more tests. So it will be six months in between tests, which is not recommended. But they screwed up the last test, so I'm just patiently waiting.... 18's and good sleep to all of you, Susan -----Original Message----- From: bkbarney via CMLHope < [email protected]> To: cmlhope < [email protected]> Sent: Tue, Mar 10, 2015 5:29 pm Subject: Re: [CMLHope] CML visit Dear Greenie, I hope your test results come out O.K., and they can find a simple explanation for your weight loss. So sorry you are going through the stress of all this...thinking of you.... And Richard, as Sherri said, great news about your hemoglobin and the collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just to rule out and give you peace of mind. Are you more tired than usual??? Stay positive and stay strong. Keep us posted... And Sherri, so sorry you had to have a transfusion, but I hope it made you feel better and stabilized your counts.. Still praying for Marty. Jeannie, I know it's been a rough two months on ponatinib and you have felt miserable...I hope it gets better with time, and maybe, you can take less of a dose in months, years to come, if your doc recommends it to help you with the toxicity. thinking of you... Not a lot new to report here....still working on understanding and treating muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule out any other possible cancers lurking, but I don't think that is it..at least I, like Greenie, sure hope not. 18's to all Beth -----Original Message----- From: Myvety2k via CMLHope < [email protected]> To: cmlhope < [email protected]> Sent: Tue, Mar 10, 2015 5:31 am Subject: Re: [CMLHope] CML visit Hi Group, As of last Tuesday I have lost 5 pounds and I don't know why. Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going over to get some blood work at 7 a.m. Comprehensive metabolic panel, cbc (no diff), vitamin B12 level and TSH, Ultrasensitive. Also he want's me to have a colonoscopy to screen for colon cancer Friday. I really don't need 2 different kinds of cancer so I'm worried. Will let you all know what happens. greenie In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time, [email protected] writes: Richard, That is great news about the your haemoglobin. I also think it's great that your drs are talking to one another. That is so important. Last week, I had to get a transfusion as my counts were so low. I went to my onc and he did the usual blood draw and my WBC was 2.4. That was enough to send me over to the hospital for type and cross match and a transfusion. I too am eager to hear about Marty and pray for him everyday. Sherri On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope <[email protected]> wrote: Richard, excellent news and I'm happy to hear that your hemoglobin has stabilized. Glad that your doctors are in sync, too, because that will certainly make your life easier. Yay! Marcie Sent from my iPhone On Mar 10, 2015, at 12:15 AM, Richard H < [email protected]> wrote: I visited my VA ONC today and both ONCs are bck on the same page. The better news is it appears that my hemoglobin has stabilized at 10.5. we are going to move forward with the testing program until the end of May. Another piece of news that makes me very happy is that both ONC's works at Kansas University Cancer Center. The VA contracts it's Doctors and Fellows (Doctors in training). They can access all my records at both offices with the new Cerner Medical Systems that are being installed world wide. I am anxiously waiting for more news from Marty, and him keeping him my prayers. Richard H. -- -- [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. -- -- [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. -- -- [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.
