A-okay. Working with my ONC is what I have been doing since Feb. 2002. This is a second round for me. At 5 1/2 years I been through this on 400mg Gleevec for 6 months.. This time from Nov. 2014 I am on 300mg Gleevec. I have been on and off Iron pills 65mg and also Procrit. I get my medicine with the VA and they require that I see a cancer doctor there. The consults are forth coming all the time. My counts are almost zero, so was hoping I could back off the Gleevec again (last time I was off 6 years). Now this has shown up early to contend with. Yes, I have already started planning when I will go back on iron pills 1st and if my counts don't stabilize before I get to RBC 9 then I will have a shot of Procrit to take. I did have transfusions last time that would bring me up above 11. 3 weeks later when RBC was below 8 I would repeat procedure.
Richard H. On Wednesday, July 22, 2015 at 10:27:33 AM UTC-5, Nick 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, "cml...@googlegroups.com > <javascript:>" <cml...@googlegroups.com <javascript:>> wrote: > > > cmlhope@googlegroups.com > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> > Google > Groups > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > Topic digest > View all topics > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> > > > - CBC results 7/17 > > <https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc&.rand=3qluc4aifd787#group_thread_0> > > - 2 Updates > > CBC results 7/17 > <http://groups.google.com/group/cmlhope/t/b9bbb60055933c08?utm_source=digest&utm_medium=email> > > bkba...@aol.com <javascript:>: 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 <cml...@googlegroups.com <javascript:> > > > To: cmlhope <cml...@googlegroups.com <javascript:>> > 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 <cml...@googlegroups.com <javascript:>> > To: cmlhope <cml...@googlegroups.com <javascript:>> > 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 < rbhuf...@gmail.com <javascript:>> > 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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > 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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > 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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > For more options, visit https://groups.google.com/d/optout. > bkba...@aol.com <javascript:>: Jul 21 10:29PM -0400 > > Go Greenie go!!!! > Way to go...thanks for sharing...keep us posted!!! Beth > > > -----Original Message----- > From: Richard H <rbhuf...@gmail.com <javascript:>> > To: cmlhope <cml...@googlegroups.com <javascript:>> > 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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > For more options, visit https://groups.google.com/d/optout. > Back to top > <https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc&.rand=3qluc4aifd787#digest_top> > > You received this digest because you're subscribed to updates for this > group. You can change your settings on the group membership page > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/join> > . > To unsubscribe from this group and stop receiving emails from it send an > email to cmlhope+u...@googlegroups.com <javascript:>. > > > -- -- [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.
