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#1 CallMeLucky

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Posted 29 February 2012 - 05:34 PM

Yesterday my wife's younger brother suddenly died, he was only 36 years old.  I am in shock and so sad.  Things have been so hard for my wife - my CML, her dad diagnosed with Brain Caner, her mom died years ago from Colon Cancer, and now her brother just dies suddenly out of no where.  It doesn't make any sense.

When I was diagnosed a year and a half ago, I doubted I would ever attend anyone else's funeral - today I am the one making funeral arrangements for my brother in law while my father in law is dying in a hospital.

I do not understand life.........


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%
 

 


#2 Pin

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Posted 29 February 2012 - 05:46 PM

Oh Lucky, I am so very sorry to hear this. I know there is nothing I can say to make it better and I am really not good with words, but I am just so sorry that this has happened. I am thinking of you and your wife and her family during what I know must be a terribly difficult time xxx.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 JoshLee

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Posted 29 February 2012 - 05:46 PM

So sorry to hear about all of this pain, lucky. I sometimes wonder if we are all just spinning around the world under nobody's watchful eye. It sometimes seems like karma doesn't exist. Sometimes when you are so sure things will get better, they get worse. I think all you can do is be the best husband you can be! Prayers going up for you and yours.



#4 Skittles

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Posted 29 February 2012 - 05:52 PM

Oh Lucky, my heart and prayers go out to you and your wife.  Blessings, Skittles



#5 jrsboo

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Posted 29 February 2012 - 06:15 PM

Dear Lucky,

My sincere condolences.  I am so sorry your family is having to deal with so many major issues.  Please know that you and your family are in my family's hearts and thoughts.

Caroline



#6 pammartin

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Posted 29 February 2012 - 06:20 PM

God Bless Lucky, I have no words that offer real comfort, please take care of yourself and your family.

Pam



#7 jjg

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Posted 29 February 2012 - 06:22 PM

Sorry Lucky, that is really tough news. Life definitely can be a bugger to understand. Will be thinking of you and your wife. Josie


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#8 janne

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Posted 29 February 2012 - 06:28 PM

Lucky,

Just know that you are a comfort to those around you whether you realize it or not...we sometimes do not have the answers, but you are still making a difference by being in their lives..just know that you are ..prayers for your family at this time....Take care..Janne


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#9 Muslim

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Posted 29 February 2012 - 06:48 PM

Hello My friend


I really have the best solution for your problem

I came here by chance . I typed this sentence in Google ( I am so sad ) and your topic appeared so I came here I registered five minutes ago just to bring the best solution for you and for all sad people .you might  ask what is the best solution for my problem  I don't think that there is a solution for my problem, but believe me I have the solution that makes your vision for this life will be better I know that you are disappointed but don't be hopeless and read carefully my advice to you  . My friend you know that everyone of us must face a problem in this life no one can avoid this and you also know that death is the inevitable end for all of us , but did you ask yourself  why do we live in this life . You might have this question  so I will answer you .

My friend Allah ( God ) created us to worship him alone without a partner . Allah send prophet Muhammad to all mankind to ask them to worship Allah the powerful and the merciful . Allah send Muhammad with a great book which is Quran the book that will make your life better . Throughout Quran you will know why do we live and what is the purpose of life .

So my friend the best solution for you is to come to Islam your faith will increases and you will get better . Remember I came here by chance so may Allah sent me for you to solve your problem I don't force you to become a Muslim I just ask you to read about Islam and the decision up to you . (please response)

Best Wishes



#10 hannibellemo

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Posted 29 February 2012 - 07:06 PM

Lucky,

My most sincere condolences to you and your wife and your families. There is nothing I can say to take away the pain; just know you are all in my thoughts and in my heart tonight and always.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#11 mikefromillinois

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Posted 29 February 2012 - 07:07 PM

So sorry for your loss Lucky.  Hang in there...

Mike



#12 Marnie

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Posted 29 February 2012 - 07:22 PM

Lucky. . .so sorry to hear your news.  My best wishes go out to your wife and your family.  Life is not fair.  I do not understand why bad things happen to good people. 

Marnie



#13 Judy2

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Posted 29 February 2012 - 07:28 PM

I am so sorry for your lose, Lucky. Life just seems so unfair sometimes. When my mom passed someone sent us the following, I thought it was beautiful.

                                                                           The Ship

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch her until at length she is  only a speck of white cloud just where the sea and the sky meet and mingle with each other. Then someone at my side exclaims "There she is gone".

Gone where? Gone from  my sight that is all. She is just as large in hull and mast and spar as she was when she left my side, and just as able to bear her load of living freight to the place of  her destination. Her diminished size is in me not in her, and just at that moment when someone at my side says "she is gone," there are other eyes watching for her coming and other voices to take up the glad shout "There she comes"

And that is dying.

                                                                         Unknown

-my deepest sympathy, Lucky

Judy



#14 NotJack?

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Posted 29 February 2012 - 07:50 PM

Very sorry for your and your family's loss Lucky,  Jack


Jack


#15 Happycat

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Posted 29 February 2012 - 08:00 PM

Wow, Lucky, that IS a shock!  My condolences to you and your wife. The poor thing must feel like she's being punished.

Was it an accident or something like a heart attack or stroke?  He was so young, just doesn't seem right. Did he leave a wife and kids behind as well ?  I can imagine their pain and shock. I will pray for comfort for you all. 

Hugs and tears,

Traci



#16 pamsouth

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Posted 29 February 2012 - 08:57 PM

http://www.bluemount...hy/card-3123201

Praying for you and your family and this sad time.

Pam Southerland-Spurgeon


PamSouth


#17 pamsouth

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Posted 29 February 2012 - 09:03 PM

Judy 2,  That is so beautiful.  If it is Ok with you,I would like to post it on my FaceBook, for others who are in mourning.

thanks and blessings, Pam Southerland/Spurgeon


PamSouth


#18 reedgirl

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Posted 29 February 2012 - 09:23 PM

My deepest deepest sympathy to you and your wife Lucky.  There is no explanation for life changing events that completely turn our world upside down and inside out.  We have all dealt with life changing moments at diagnosis, but to have so many as you and your family is not something I can relate to.  My father in law died very unexpectedly one year ago, the morning after we left for a vacation.  It tore our world apart, left a vacancy that we are still trying to recover from.  I understand how devastating this is for you, I just can't imagine how tough and difficult dealing with everything is.  Just know we are all here for you, offering support, praying for you all, willing to listen and give encouragement in any way we can.  My thoughts and prayers are with you all.

Life just isn't fair at times, so sorry you have to go through this.

Audrey



#19 Rissa

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Posted 29 February 2012 - 09:30 PM

I'm so sorry for your loss Lucky. 



#20 Judy2

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Posted 29 February 2012 - 09:34 PM

Hi Pam South,

Of course.

Judy






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