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Sad news-horselover--Sonja--died on Saturday:(


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#1 lehrerin

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Posted 25 April 2011 - 06:26 PM

Sonja lost her battle with cancer  on Saturday.   She had a bmt sometime around February with a 6/10 match.  She did well initially, but it sounds like graft-versus host took a toll.  We were supposed to meet this summer in Southern Indiana with our horses.  We will miss you Sonja.

https://www.facebook...104133816337025

and part of her story here for those new to the board.

http://community.lls.org/thread/9042

since the fb link won't work unless you have facebook, here's her own blog post

http://community.lls...horselover/blog



#2 Ludwigh

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Posted 25 April 2011 - 06:54 PM

Rest in Peace Sonja oh valiant CML warrior

Terry



#3 Trey

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Posted 25 April 2011 - 08:46 PM

Sonja and I had many email conversations.  Her CML was aggressive from the beginning.  I shall miss her.....



#4 Tedsey

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Posted 25 April 2011 - 10:47 PM

I had owed her an email.  I really thought she was doing fine and would be OK, so I took my time.  I am such a jerk.  My loss completely.  I cannot believe this happened so fast.  I was worried about her with a 6 out of 10.  And I thought it was short of a miracle she was doing so well right after her transplant.  I had so much hope she would come out of this running.  Sonja made light of her suffering and she was always worried about me!  She was so kind.  I am in shock.  I was always afraid if something happened I would never know.  Thanks Lehrerin for telling us.  I had come to care for Sonja so much.  Does anyone know how to send condolences to her family?  She had two children who were very young adults.  This totally sucks.  I was looking forward to meeting her when she got stronger.  We are one state away.  It would have been an honor.  She loved life and was an extremely strong and intelligent person.  She was very active and loved riding and her horses.  This disease is so cruel.  It took the wrong person.  May she pass on to an even greater existence surrounded by love and peace for eternity.  She sure left a positive mark in this world and she sure touched my heart.  I am grateful our paths crossed.  The world is a better place because she was here. Sonja was an exceptional human.  I will never forget her.

Tedsey 



#5 valiantchong

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Posted 26 April 2011 - 01:27 AM

Know her thru this site, Q and A.., she is such a jovial and positive person. sad to know she is not around anymore...



#6 MJL

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Posted 26 April 2011 - 04:28 AM

Rest in peace Sonja.

MJL.



#7 Trey

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Posted 26 April 2011 - 09:15 AM

http://hosting-24465...Rogier-91205339



#8 MACELPatient

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Posted 26 April 2011 - 10:07 AM

My thoughts and prayers go out to her and her family.



#9 everonward

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Posted 26 April 2011 - 10:52 AM

This is very sad news indeed. My thoughts are with her family.

Marian



#10 jsmiddiebrush

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Posted 27 April 2011 - 07:44 AM

So sorry to hear of this loss.  I didn't "know" Sonja from the message boards, but upon reading her obituary I saw that she lived in Indiana, less than an hour away from me, and I have forever missed the opportunity to connect with her.

There are many people out there with the attitude of "oh you're so lucky to have CML, you'll be fine, take a pill every day and get over it."  Sadly, this was not what happened for Sonja, her family, and her family.   While its rare that we lose a member, its important to remember that this really is a fatal disease for those who do not respond to the medications.  My thoughts are with Sonja's family today, and all of you too.



#11 CallMeLucky

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Posted 27 April 2011 - 09:12 AM

This is so confusing, sad, and frustrating.  I didn't know Sonja and from reading her posts I knew very little about her case, but there are things that just jump out at me that make me wonder why this had to happen.  I get that she had an aggressive form of CML that progressed to a Blast phase and/or ALL.  I realize that she needed to have the transplant, but what I don't get is why they would proceed with a 6/10 match.  In reading her posts she stated that Gleevec had stopped working for her and Sprycel had also stopped working.  Then she said she was on Tasigna and she was doing ok.  Why wouldn't they have kept her on Tasigna until a better match could have been found?  It seems like there was this rush to get it done when there wasn't an imminent threat (perhaps there was, but that is not what she wrote about in her posts).  She said Tasigna was working but the doctors wanted to do the transplant while she was still strong enough.  I get that, but again, if the Tasigna was keeping the disease under control, even if only temporarily, why not continue that treatment until a better match could have been found?  And what about Ponatinib or another experimental drug?  I just don't understand the decision, but I have to recognize that I have very few details.  I don't know, maybe with a better match her outcome would have been the same or the disease would have progressed to the point that they wouldn't have been able to do the transplant.  I certainly recognize that I am not an expert and don't have all the facts here.  It just frustrates me and saddens me to hear something like this, as I'm sure it does for everyone else.  I hope Sonja as at peace now and her family can get through this difficult and painful 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%
 

 


#12 Skittles

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Posted 27 April 2011 - 11:40 AM

Lucky, I have been wondering why they did not wait for a better match also.  A 6/10 match sounds like a potential problem from the getgo but as you posted perhaps there were other reasons not fully explained in Sonja's blog.   So sad to lose anyone due to a transplant and Sonja's story is very moving.  May she rest in peace and may her family and friends find peace in the love and many memories they shared with her.  Blessings,  Skittles






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