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, "[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
> -------------------------------------------------
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> -------------------------------------------------
>
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> [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
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> To post to this group, send email to [email protected]
> To unsubscribe from this group, send email to [email protected]
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>
>
>
>
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -------------------------------------------------
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