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Leukemia Shock!


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#41 Billie Murawski

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Posted 06 December 2015 - 11:55 PM

Dear Audrey,Greg,& Victoria,

 I didn't know, I am so very sorry,I'll pray and pray for her. I'm in shock right now, Greg please take care of yourself I know you and Victoria feel so helpless right now so staying healthy is the best way you can help her. Sincerely Billie



#42 Trey

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Posted 07 December 2015 - 06:12 PM

20 days, no engraftment of donor cells, being kept in a semi-conscious state, and condition is poor.  She is at the end of "normal" engraftment period her Docs had expected and/or hoped for, and although it could still happen, her overall poor condition and very serious side effects of a type of chemo no longer used for regular transplant cases is a major problem for her recovery even if engraftment occurs.  Her case is not "typical" and is not like someone who was in relatively good condition going into the transplant, so such comparisons are not very useful.



#43 Trey

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Posted 15 December 2015 - 10:40 PM

Our dear friend Audrey fought a brave battle...... 

 

http://www.legacy.co...67263&fhid=9666



#44 Buzzm1

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Posted 15 December 2015 - 11:13 PM

Our dear friend Audrey fought a brave battle...... 

 

http://www.legacy.co...67263&fhid=9666

Sad to hear .. Rest in Peace Audrey and my condolences to the family.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#45 CallMeLucky

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Posted 15 December 2015 - 11:31 PM

I am very saddened by this and feel deeply for her family, she was so young. I remember when she came to the site, she was such a caring care giver, interested in learning as much as she could to support her husband. Such a cruel twist that she should become the patient and not have the benefit of miracle drugs like tki and assurances that everything would be fine. Such a horrible disease. I hope her family is able to find peace over time.
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%
 

 


#46 kat73

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Posted 16 December 2015 - 10:48 AM

This is so tragic; I am so sorry.  I can't begin to imagine how this affects her husband, because of his CML.  What he has seen and the struggle to not project anything onto himself - and the struggle to keep all of that inside and not voice it - the fear and the need to keep a lid on the fear - wow.  The unfairness of what happened to Audrey is so monumental.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#47 Lucas

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Posted 16 December 2015 - 11:32 AM

So sorry. She was too young. Rest in peace.

#48 r06ue1

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Posted 16 December 2015 - 01:32 PM

Oh no, I am so very saddened by reading this news today.  I did not know Audrey but any time someone with cancer dies it really hits close to home, probably for us all.  

 

Death is simply a door, we must all take eventually and that door simply leads to what is next.  She has been, is and always will be part of our cosmos so take heart in knowing that she is still here with us, simply in a different state.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#49 Kali

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Posted 16 December 2015 - 03:41 PM

This is so very very sad. Praying for Audrey's husband, daughter and extended family in the days ahead.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#50 MACELPatient

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Posted 16 December 2015 - 03:54 PM

Condolences to the family.   :(



#51 scuba

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Posted 16 December 2015 - 04:58 PM

dove.jpg


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#52 Cathy

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Posted 17 December 2015 - 08:58 AM

My sincere condolences to Audrey's family . So sad

 

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#53 LottieR

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Posted 17 December 2015 - 09:27 AM

Trey,

Thank you for the update. I am so sad for Audrey and her family. This is her carepage, and there is a final update from her daughter which I found very touching, which is why I share the link now.

http://www.carepages...reyReed/updates

Best thoughts and prayers go to her husband and daughter now as they face a life without her.

-Lottie



#54 SUE

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Posted 17 December 2015 - 09:39 AM

So sorry to hear this sad news.  

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#55 Melanie

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Posted 18 December 2015 - 01:06 AM

So very sorry for this family that has had to endure so much from these horrible blood diseases. I pray for peace and comfort to help lift their spirits as they mourn such a loss. Bless them all!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#56 Billie Murawski

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Posted 18 December 2015 - 04:29 AM

Good by Audrey.



#57 nia.435

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Posted 18 December 2015 - 07:57 AM

I am very saddened on hearing of Audreys passing away.  May she rest in peace.

 

Vanessa



#58 soundoff

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Posted 18 December 2015 - 09:29 PM

My condolences to the family.

#59 Billie Murawski

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Posted 18 December 2015 - 11:50 PM

dove.jpg

That is beautiful Michael.






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