Thanks for the update Richard. I too have had anemia but not really bad until tasigna. Diet is very important so set a list of iron rich foods and place it where you can see it. I also have high potassium so have to watch that. Good luck.
My Motto: Faith and Pills Jeanie 🐟🐟18,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 25, 2015, at 12:19 AM, Richard H <[email protected]> wrote: > > 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, "[email protected]" >> <[email protected]> wrote: >> >> >> [email protected] Google Groups >> Topic digest >> View all topics >> CBC results 7/17 - 2 Updates >> CBC results 7/17 >> [email protected]: 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 <[email protected]> >> To: cmlhope <[email protected]> >> 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 <[email protected]> >> To: cmlhope <[email protected]> >> 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 < [email protected]> 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, >> [email protected] 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 [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. >> [email protected]: Jul 21 10:29PM -0400 >> >> Go Greenie go!!!! >> Way to go...thanks for sharing...keep us posted!!! Beth >> >> >> -----Original Message----- >> From: Richard H <[email protected]> >> To: cmlhope <[email protected]> >> 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, >> [email protected] 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 [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.
