Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Wow Angie! My platelets go high not low.  So sorry to hear that. I did have 
transfusions on Tasigna as my platelets went under 8. I think he could have 
taken me off meds and they would have gone up. 
Every thing is good now.  


My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
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 Mar 24, 2016, at 8:37 PM, ANGELYN ESDERS  wrote:
> 
> Hi. Marcie.
> Did your platelets also bottom out with your red cells?
> A year ago April I lost almost every single platelet, and also needed 6 blood 
> transfusions in a week. The specialists had blamed it on my lupus.
> I recovered and strangely lost a LOT of hairbut I have been very well 
> since then. My hair is growing back.
> Have been in remission from CML since July 2001. I have been off Gleevec for 
> 10 months now. So far so good.
> With a tag-team like leukemia and lupus, one never knows what to expect next.
> Anyway, Life is good. No complaints.
> Angie in Canada
> 
> 
> From: 'Marcie Goodman' via CMLHope 
> To: cmlhope@googlegroups.com 
> Sent: Thursday, March 24, 2016 5:07 PM
> Subject: Re: [CMLHope] To Susan Zimmerman
> 
> Susan, as always, I have you and Roy in my prayers. Please let us know how 
> your test turns out. 
> 
> I just got out of hospital because my red cells bottomed out and I became 
> very sick. So some transfusions and several days later, just came home. I 
> will be undergoing more tests, might have gallbladder problem which arose 
> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
> always interesting!
> 
> Marcie
> 
> 
> 
> Sent from my iPhone
> 
>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> 
>> Thanks for the encouragement. I may write him but not confident he would 
>> have any different answers. Dr. Jessica Altman is completely on top of 
>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>> causesnothing unusual except cavernous malformations turns up. Have 
>> checked everything at least three times over the yrs. So again off meds 
>> hopefully for a long time unless #'s go high.
>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>> Hope all is well with you!
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>  wrote:
>> 
>> Susan:
>> 
>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>> 
>> At least email him
>> 
>> Hugs,
>> Susan Rosenthal
>> 
>> Have a wonderful day
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
>> 
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> 
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Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Anthony and good to hear from you.  My right side pain was with me for a 
while but got worse when put in Tasigna.  
It now goes up to a 10 and have to take pain meds for it. No cure just 
management.  Probably a lot like Lupus. 
What tki do you take?

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
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 Mar 25, 2016, at 10:52 AM, Anthony Lanoue  wrote:
> 
> 
> I also get mild right side pain
> 
> Anthony Lanoue
> Sent with MailBuzzr
> On Mar 24, 2016, 5:44 PM, Icandoallttc' via CMLHope wrote:
> Hi Susan and thanks so much. 
> My side pain is still bad but tests show nothing. Just treating the pain.  I 
> read something about an MS hug.  My side pain has a lot of similarities to 
> that.  
> I think the tkis caused this as it got worse when I had to go on Tasigna.  
> My Creatine was up but it seems to go up and down along with potassium.  
> I've been on Ponatinib for 12 months now. 
> No test planned thank Heavens. Have to go back in 3 months.  They take PCR 
> every 3 months. I forgot to get my last results. Thanks again.  
> 
> My Motto: Faith and Pills❤️
> With 💗Jeanie 🐟🐟18,s Chi
> 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 Mar 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> 
>> Thank you so much, Jeanie!!! You are special to us all. How's the sideache 
>> and any more tests about it specifically?
>> 18"s,
>> 
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> 
>> On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
>>  wrote:
>> 
>> Hi Susan and Marcie
>> Prayers for both of you.  Sorry for your hospital stay but we need them when 
>> we get sick.  I hope you find the root of your problems.  
>> I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 
>> Susan good luck off meds.  Hang in there and fight. Blessings 
>> 
>> My Motto: Faith and Pills❤️
>> With 💗Jeanie 🐟🐟18,s Chi
>> 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 Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
>>  wrote:
>> 
>> Susan, as always, I have you and Roy in my prayers. Please let us know how 
>> your test turns out. 
>> 
>> I just got out of hospital because my red cells bottomed out and I became 
>> very sick. So some transfusions and several days later, just came home. I 
>> will be undergoing more tests, might have gallbladder problem which arose 
>> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
>> always interesting!
>> 
>> Marcie
>> 
>> 
>> 
>> Sent from my iPhone
>> 
>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> 
>> Thanks for the encouragement. I may write him but not confident he would 
>> have any different answers. Dr. Jessica Altman is completely on top of 
>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>> causesnothing unusual except cavernous malformations turns up. Have 
>> checked everything at least three times over the yrs. So again off meds 
>> hopefully for a long time unless #'s go high.
>> 
>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>> 
>> Hope all is well with you!
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> 
>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>  wrote:
>> 
>> Susan:
>> 
>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>> 
>> At least email him
>> 
>> Hugs,
>> Susan Rosenthal
>> 
>> Have a wonderful day
>> 
>> -- 
>> -- 
>> [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
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>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
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>> For more options, visit https://groups.google.com/d/optout.
>> -- 
>> -- 
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>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are su

Re: Re: [CMLHope] To Susan Zimmerman

[Anthony Lanoue]

I also get mild right side painAnthony LanoueSent with MailBuzzrOn Mar 24, 2016, 5:44 PM, Icandoallttc' via CMLHope wrote:Hi Susan and thanks so much. My side pain is still bad but tests show nothing. Just treating the pain.  I read something about an MS hug.  My side pain has a lot of similarities to that.  I think the tkis caused this as it got worse when I had to go on Tasigna.  My Creatine was up but it seems to go up and down along with potassium.  I've been on Ponatinib for 12 months now. No test planned thank Heavens. Have to go back in 3 months.  They take PCR every 3 months. I forgot to get my last results. Thanks again.  My Motto: Faith and Pills❤️With 💗Jeanie 🐟🐟18,s ChiDx 1/2004. CML LeukemiaStarted Gleevec 2/2004Started Tasigna  9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer CenterOn Mar 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope  wrote:Thank you so much, Jeanie!!! You are special to us all. How's the sideache and any more tests about it specifically?
18"s,
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11
On Thursday, March 24, 2016 'Icandoallttc' via CMLHope  wrote:

Hi Susan and MarciePrayers for both of you.  Sorry for your hospital stay but we need them when we get sick.  I hope you find the root of your problems.  I had my gallbladder out many years ago.   That's some bad pain.  Good luck. Susan good luck off meds.  Hang in there and fight. Blessings My Motto: Faith and Pills❤️With 💗Jeanie 🐟🐟18,s ChiDx 1/2004. CML LeukemiaStarted Gleevec 2/2004Started Tasigna  9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer Center
On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope  wrote:Susan, as always, I have you and Roy in my prayers. Please let us know how your test turns out. I just got out of hospital because my red cells bottomed out and I became very sick. So some transfusions and several days later, just came home. I will be undergoing more tests, might have gallbladder problem which arose after I was discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!MarcieSent from my iPhoneOn Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope  wrote:Thanks for the encouragement. I may write him but not confident he would have any different answers. Dr. Jessica Altman is completely on top of things for me. I"ve been to two other specialists at Nwestern to dig into causesnothing unusual except cavernous malformations turns up. Have checked everything at least three times over the yrs. So again off meds hopefully for a long time unless #'s go high. 
Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
Hope all is well with you!
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11
On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope  wrote:Susan:Are you able to have an appointment with Dr. Druker in Portland, Oregon?At least email himHugs,Susan RosenthalHave a wonderful day-- -- [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.comTo unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.comFor 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.



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Re: [CMLHope] Hi Everyone its been awhile

[Shannon L]

Hi Jeanie

Thankyou I don't feel young, I hope to better better soon one day at a time 
I suppose and yes I will keep doing photography it has saved my life 
besides my son and Glivec

Glad you have found another drug that works for you, you have certainly 
been on a few I hope the side affects are not too bad.

Love Shannon


On Friday, March 25, 2016 at 5:32:57 AM UTC+11, Icandoallttc wrote:
>
> Hi Shannon and great to hear from you.   So happy Gleevec is working.   It 
> quit working for me after 5 years as you probably remember.  
> I am now on one of the new generation of drugs called Ponatinib. It is 
> working for me for one year now. 
> You are still a young chick. Keep fighting and taking pictures.  Your son 
> sounds wonderful.  
> Love and happy Easter to you!!!
>
>
> My Motto: Faith and Pills❤️
> With 💗Jeanie 🐟🐟18,s Chi
> 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 Mar 24, 2016, at 6:41 AM, Shannon L > 
> wrote:
>
> I checked out a few posts good to see a few I remember. I hope everyone is 
> doing well.
> I was dx 1998 sone was 15mths he is now 19 turning 20 at the end of the 
> year I have just past my 18yr of CML.
> Im since on Glivec 400mg and still in remission ( with a few problems as 
> to be expected.
>
> I will have some major financial decisions to make soon but I have seen my 
> son complete high school and he is now studying for a yr at TAFE and 
> working part time now if he would only get his car licence but I will 
> probably worry more when he gets it. 
>
> I have my own photography business which I work around my health as much 
> as I can I find as I get older now 56 I do find it harder I recently had 
> the worst chest infection that I can remember.
>
> I am still dreaming of doing some travelling OS and around Australia so I 
> hope I can make this happen 
>
> I wish everyone a safe easter 
> love to all Shannon xo
>
> -- 
> -- 
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