Elizabeth, I noticed that your husband went to St Louis for treatment. Did he see a CML specialist? Where did he go? We live near St Louis but have not been able to find a CML specialist there. We are going to Ann Arbor, MI, to see Dr Talpaz; but it is getting more and more costly. Thanks for your help. Joyce in IL
On Jul 22, 2015, at 10:24 AM, NICK WOODS wrote: > Hi all, Richard my husband Nick was critically anemic from early 2013- early > 2015. His Oncologist carefully researched "why" the anemia? Tests, and a > trip to St. Louis, Mo. for another set of tests and the opinion of a > respected ONC in research of CML. Then Nick sand his ONC settled on OTC iron > pills! It's working! The Oncologist and Nick work together because we all > realize no one has an answer to completely cure CML at this time. So sharing > information, side effects, other illnesses which impact the body really is > for the persons who will have CML in the future. But we are grateful for our > Oncologist, his care for his patients, and his ability to listen to each > patient. Nick goes to Lawrence Memorial Oncology Center. Nick's had CML > since Jan. 2003 and started Gleevec late Feb. 2003 after his insurance > company "reviewed his case" to see if he really needed Gleevec! (No we > haven't been with that insurance company for a very long time!) > > This isn't helping find your answers, but I hope and pray you'll have an > uptick in your counts. I hope your ONC is on the ball and working to find an > answer for your anemia. > > Oh, before I forget....to all CML fighters: Don't eat or drink anything > which contains grapefruit. Gleevec has a reaction with grapefruit and it's > not good. Read your labels carefully on everything. Sometimes grapefruit > juice is in other fruit juice mixes, salad dressings, places you don't expect > to see it as an ingredient! > > Take care and hugs all around to each of you and your families, > Elizabeth W. > > > > On Wednesday, July 22, 2015 5:10 AM, "cmlhope@googlegroups.com" > <cmlhope@googlegroups.com> wrote: > > > cmlhope@googlegroups.com Google Groups > Topic digest > View all topics > CBC results 7/17 - 2 Updates > CBC results 7/17 > bkbar...@aol.com: Jul 21 10:21PM -0400 > > Hi everyone...haven't been online in a few weeks...lots going on..but wanted > to say hi..and let everyone know I am still here, and think of all of you > most every day..keeping you in my thoughts and prayers.. I see Dr. Druker > Thursday, so flying to Oregon tomorrow morning. Richard, I am hoping good > things for you....sorry to hear the H counts are lower...hope they come back > up and stabilize...sometimes this illness feels like walking a tight > rope...it's a balancing act...one foot in front of the other... > > > susan..I would love to hear more about what you have been learning???..it may > be in back emails..so I will check..but sounds inspiring and hopeful!! so > keep it up!!! > > > Warmest regards to all, > 18 > s > Beth > > > > -----Original Message----- > From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Mon, Jul 20, 2015 10:40 am > Subject: Re: [CMLHope] CBC results 7/17 > > > Great news, Greenie! Sorry to have missed your trip to Chicago this time. > We've all been very busy enjoying our brief time without snow, I guess. Enjoy > summer, dance today! I am going to get so healthy with the new discoveries > I've learned that you all will be blown away! > > 18's and happiness, (Life and happiness) > > > > Susan F. Zimmerman > > > > > > > > -----Original Message----- > From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Sun, Jul 19, 2015 5:00 pm > Subject: Re: [CMLHope] CBC results 7/17 > > > > > Great news Greenie!! > > I is what we all want to hear. Good to hear from you. > > Richard I got my hmg up to 14 but it dropped to 13. It had been about 11 for > a long time. > > These counts are a battle that's for sure. > > Happy Sunday every one. > > My Motto: Faith and Pills > Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s > Dx 1/2004. CML Leukemia > > Started Gleevec 2/2004 > > Started Tasigna 9/2009 > > Started Sprycel 11/2009 > > Started Ponatinib January 2015 > > Dr Balducci Moffitt Cancer Center > > > > > On Jul 19, 2015, at 12:17 AM, Richard H < rbhuffm...@gmail.com> wrote: > > > > > > Thanks Greenie. It is great to hear that you are at that wonderful "O". I > agree all labs are different but This is the same one week after week. I > should be about there after the last one was .2%. There will be lots of > talking in about 5 weeks, when I see the ONC. My fluid levels stay about 1 > all the time. I have had 5 by-passes (24 years), added a 2 prong pacemaker > (about 5 years ago) because scar tissue. > > On Saturday, July 18, 2015 at 6:50:33 AM UTC-5, greenie wrote: > > > After starting Gleevec in Jan. of 2000 my RBC have always been on the low > side 3.64 and the norm on the low side is 4.20 to 5.80. No matter what lab > you go to their counts are always different. By the way when I went to > Chicago the first week in June for my blood work they called me a few days > later to tell me the no cancer cells are showing up which is nice to here. I > am having a problem with fluid down around my feet and ankles so the NP > wanted me to get a Echocardiogram and the test results I'm down loading for > you all to see. Other wise I'm doing find. Everyone take care of yourselfs. > > > > Greenie > > Club member 48 > > > > > In a message dated 7/18/2015 12:27:02 A.M. Eastern Daylight Time, > rbhuf...@gmail.com writes: > > > > After all the weeks working to get my RBC up to 12.3 it has started dropping > again. Two weeks ago it was at 12.0, and today's count was down to 11.1. So > it appears that I will be playing with attempting to keep my counts up. I > will have my next BCR-ABR 2nd week of Aug and get the results 2 weeks later. > > > > > 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 cml...@googlegroups.com > To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com > 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 cmlhope+u...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > bkbar...@aol.com: Jul 21 10:29PM -0400 > > Go Greenie go!!!! > Way to go...thanks for sharing...keep us posted!!! Beth > > > -----Original Message----- > From: Richard H <rbhuffm...@gmail.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Sat, Jul 18, 2015 10:17 pm > Subject: Re: [CMLHope] CBC results 7/17 > > > > Thanks Greenie. It is great to hear that you are at that wonderful "O". I > agree all labs are different but This is the same one week after week. I > should be about there after the last one was .2%. There will be lots of > talking in about 5 weeks, when I see the ONC. My fluid levels stay about 1 > all the time. I have had 5 by-passes (24 years), added a 2 prong pacemaker > (about 5 years ago) because scar tissue. > > On Saturday, July 18, 2015 at 6:50:33 AM UTC-5, greenie wrote: > > > After starting Gleevec in Jan. of 2000 my RBC have always been on the low > side 3.64 and the norm on the low side is 4.20 to 5.80. No matter what lab > you go to their counts are always different. By the way when I went to > Chicago the first week in June for my blood work they called me a few days > later to tell me the no cancer cells are showing up which is nice to here. I > am having a problem with fluid down around my feet and ankles so the NP > wanted me to get a Echocardiogram and the test results I'm down loading for > you all to see. Other wise I'm doing find. Everyone take care of yourselfs. > > > > Greenie > > Club member 48 > > > > > In a message dated 7/18/2015 12:27:02 A.M. Eastern Daylight Time, > rbhuf...@gmail.com writes: > > > > After all the weeks working to get my RBC up to 12.3 it has started dropping > again. Two weeks ago it was at 12.0, and today's count was down to 11.1. So > it appears that I will be playing with attempting to keep my counts up. I > will have my next BCR-ABR 2nd week of Aug and get the results 2 weeks later. > > > > > 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 cml...@googlegroups.com > To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com > 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 cmlhope+u...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 cmlhope+unsubscr...@googlegroups.com. > > > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.