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My one year cancerversary


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#1 jenz

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Posted 05 November 2011 - 11:59 PM

Today marks a year ago I was dx with CML.  While it has been a crazy year with many ups and downs there were many silver linings too. I am very grateful for my family, friends, medical team, including this message board family and all the comfort and advise you guys gave over the course of this last year.  After six months of being suboptimal on Gleevec and now six months of Tasigna where I have reached CCyR I am definitely returning back to my old life of 'normalacy'. 

I had an oncologist appointment this week where a PCR was done (still waiting on results) but I found that I had this overwelming feeling while talking to my doctor that I was alive due to the decisions/actions made my her. Has anyone ever felt that way about their oncologist? I know I have never felt that way about any doctor in my life before up until this point. 

Anyway just wanted to say thanks. I made the mistake of celebrating by seeing the moving 50/50 tonight. While it was a good movie it definitely is a little heavy so prepare yourself if you go to see it.



#2 mikefromillinois

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Posted 06 November 2011 - 07:27 AM

Congrats jenz!  I enjoyed your mention of silver linings.  Here's wishing you many more healthy and happy cancerversaries.

Mike



#3 lala

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Posted 06 November 2011 - 07:38 AM

Good morning!  Congratulations on your first year!  I wish we had a LIKE button .....I was trying to push it while reading your post!  I like starting my new day with good news!!!!!  I see Mike is up early today....he must be enjoying the beautiful fall colors in suburban Chicago like I am!!!!!!  Hope everyone has a good day!  ~Lala



#4 grannyd

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Posted 06 November 2011 - 09:29 AM

Congrats on your one year!!!!! So happy when someone tells of their cancerversaries!!!!!!! Thank God for your returning to some kind of NEW NORMAL & tasigna!! This is so encouraging to all of us here.I'm sure your PCR results will be great!! Prayers, granny d



#5 Susan61

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Posted 07 November 2011 - 07:19 PM

Congratulations on your Cancerversary.  We love great news like this.  Will look for many more postings as the years go by.

Susan



#6 jenz

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Posted 09 November 2011 - 02:31 PM

Well I just got back my results back from my most recent PCR.  I was stunned to see another significant decrease.  These values are represented as a ratio on the report. Does this mean I have reached a three log reduction? Trey does this mean I have reached major molecular response (MMR) at least?  This chart shows since dx up until now. Also since 9/15 I have been on a lower dose of Tasigna (600 MG per day verses 800 MG).

11/8/10University of ChicagoPeripherial Blood1.157
1/17/11University of ChicagoPeripherial Blood0.51
4/15/11University of ChicagoPeripherial Blood0.743
7/11/11University of ChicagoPeripherial Blood0.082
10/31/11University of ChicagoPeripherial Blood  0.0009


#7 CallMeLucky

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Posted 09 November 2011 - 02:36 PM

Cool, I finally found a post worthy of my "LIKE"

Congratulations, this is great news


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#8 Trey

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Posted 09 November 2011 - 04:05 PM

Jenz,

It is over -3 log from your initial PCR.  And almost certainly -3 log from the lab standard.  The .0009  ratio = .09%   Also equivalent to an eagle in golf.



#9 markmendonca

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Posted 09 November 2011 - 04:47 PM

my name is mark m. live in boston i am 42 years old and i was told in june that i have cml if anyone can call me  just because i cant read or wright well so chating is not good for me please anyone can help me it wood be great thanks just looking for info cell



#10 CallMeLucky

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Posted 09 November 2011 - 04:58 PM

Hi Mark

In order to get you the best support from someone who is qualified to help you, you should contact the following

http://www.lls.org/#...ionspecialists/


Information Specialists

The Leukemia & Lymphoma Society's (LLS's) Information Specialists can help people with cancer navigate through treatment, financial and social challenges and give accurate, up-to-date disease and treatment information.You can reach our Information Specialists in several ways:

  • Call (800) 955-4572, Monday to Friday, 9 a.m. to 6 p.m. ET, for support and guidance.
  • Leave a message for a call back 24/7. Use the automated response system 24 hours a day, seven days a week. Call (800) 955-4572. An Information Specialist will return your call the next business day. You can also listen to recorded information about LLS and our programs.
  • Visit Live Patient Help to chat with a specialist online, Monday to Friday, 10 a.m. to 5 p.m. ET.
  • Email your inquiries to infocenter@LLS org. All email messages are answered within one business day.

We're Here to Help

Our Information Specialists are master's level social workers and health educators who can:

  • help you deal with the challenges of your diagnosis
  • provide information about treatment options
  • help you map the best route from diagnosis through treatment and survivorship
  • conduct individual clinical trial searches for you and help you develop a list of questions to ask your doctor about participating in a clinical trial
  • help you communicate with members of your healthcare team
  • connect you to national resources
  • connect you with the patient services manager at your local chapter who can guide you to local programs and resources
  • provide you with free materials to help you on your cancer journey

Interpretation Services

Callers may request the services of a language interpreter. Medical interpretation services are available in 170 languages.

For automated translation assistance, go to web page translation. This automated tool can provide only a general translation of the page. For specific questions, please call an information specialist to request assistance or email us.

Get more information about LLS resources available in Spanish and English for patients, caregivers and healthcare professionals.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#11 markmendonca

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Posted 11 November 2011 - 09:30 AM

thats great i hope the best for u and everyone . it hard for me to understand because i have a hard time reading and writing. donte get what PCR is or anything like that. i no that when my doc . told me about it my white blood cells were at 18000 and then  30days later i then started the meds and the count was 27000 thousand . 30 days   after being on the { tasigna } meds it now is at  4700 hundred . thats good i beleive... but now i have alot of pain on my back and hips . i hope it go's away ????



#12 markmendonca

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Posted 11 November 2011 - 09:30 AM

thats great i hope the best for u and everyone . it hard for me to understand because i have a hard time reading and writing. donte get what PCR is or anything like that. i no that when my doc . told me about it my white blood cells were at 18000 and then  30days later i then started the meds and the count was 27000 thousand . 30 days   after being on the { tasigna } meds it now is at  4700 hundred . thats good i beleive... but now i have alot of pain on my back and hips . i hope it go's away ????



#13 CallMeLucky

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Posted 11 November 2011 - 09:48 AM

Mark - just so you know, I'm able to understand everything you are writing, so your communication with others is not as bad as you think.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#14 cleocans

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Posted 11 November 2011 - 10:38 AM

Lucky, thank you for posting that.  I just got done talking to an information specialist about my problem and she put my mind at ease.  I will get a second opinion and go from there.



#15 markmendonca

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Posted 11 November 2011 - 03:36 PM

what do u mean second opinion ?



#16 markmendonca

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Posted 11 November 2011 - 03:50 PM

what do's 3-log mean??? pcr and if u can tell me what ratio .09% means i hope it is great news for u .. thanks mark



#17 cleocans

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Posted 11 November 2011 - 04:43 PM

I want to find another DR to get his opinion on my course of treatment.  My current DR wants to treat me against NCCN guidelines and I am not comfortable with that.



#18 markmendonca

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Posted 11 November 2011 - 04:58 PM

r u from boston ?   i am not sure what NCCN is but i would  love to give u my doc's number from boston mg



#19 Tedsey

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Posted 13 November 2011 - 01:36 AM

Long life to you Jenz!  Congrats on such great numbers!  Here is to the big "0".

Teds






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