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So sad today


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#21 lthouse612

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Posted 29 February 2012 - 10:14 PM

Hello Lucky,...I'm so sorry....  It's really something how life can be relentless in it's ways to challenge us from day to day and never seem to let up.  I've felt that way for a while now and I understand how you're feeling too.  Just last Dec. I lost my mother to liver cancer and it has been the hardest time in my life thus far.  It's still very fresh in my mind and very much in my heart.  There's just no easy way of being "ok" with things like this when it happens to us... so close to our hearts.  It sucks and it's not fair no matter how we try to look at it.  You all have my deepest sympathy and my thoughts and prayers will be with you as well.  Do take care as best you can.....

Mark



#22 Guest_billronm_*

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Posted 29 February 2012 - 10:31 PM

Dear Lucky,

   I am so very sorry for your loss. Since I joined this site you have always been one of the first people to welcome and comfort us. And I have seen you welcoming and comforting other people on other sites also. I try to follow in your footsteps. I don't know why these things always happen to the good people, but I know that you and Josie will have the strength and courage to endure yet another tragedy, somehow, someway, someone, is always there to guide us through these terrible times.     Sincerely Billie



#23 Fas

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Posted 29 February 2012 - 11:17 PM

Lucky,

Life can not only be unfair, it can sometimes be surprisingly cruel.  My deepest sympathy for you and your family,

Fran



#24 Tedsey

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Posted 29 February 2012 - 11:47 PM

Oh Luck,

I am so sorry.  We could never have enough time with the people we love, ever.  And it is very confusing when the expected order of life, (birth, childhood, adulthood, old age, sickness, death), doesn't always happen as expected.  I am confounded and greatly saddened right along with you.  I am so sorry you and your wife have to go through all these trials.  If I were in charge, bad things would never happen to good people.  I wish you peace.

Teds



#25 Lori's okay

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Posted 01 March 2012 - 12:29 AM

Lucky,

With all the others I send condolences and prayers your way.  We lost my little sister at 36, and as someone said, it never seems to make sense to lose someone early.

I hope there are unexpected moments of peace and closeness for you and your family as you go through this time.  May the Lord bless and keep you!

Lori


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#26 ChrisC

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Posted 01 March 2012 - 03:14 AM

Lucky to have known him, lucky to remember him: may it help in accepting the cycle of life. God bless.


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#27 Cathy

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Posted 01 March 2012 - 08:30 AM

Lucky,

I'm so very sorry ! what sad news.

take care,

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 !!

 


#28 Muslim

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Posted 01 March 2012 - 09:11 AM

my mother has this disease but her trust in Allah and her faith make her satisfied that what will happen is ordered by Allah , so be patient , satisfied and ask Allah for his aid and be sure He will be with you



#29 LivingWellWithCML

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Posted 01 March 2012 - 09:32 AM

I am saddened by reading this and it gives me a heavy heart -- so sorry to hear just tragic news and my thoughts are with you and your entire family.  I've drawn the conclusion that life happens to be easier for some people (I tag this as a "charmed life"), but eventually life becomes difficult and unfair for everyone ... and it ebbs and flows as tragedy and loss come to the limelight.  Some people deal with more of these events during their lifetimes (and more often and at the worst possible times), and unfortunately it's just not fair and I have given up trying to understand it.

One positive that I'll try to draw from this -- you are obviously a *rock* in your family and people that you love are relying on you for strength, so the fact that you're having a successful treatment path is a huge blessing for everyone around you.  It means that you are able to be there for your family and provide that much-needed support in these very difficult times.  I'm not a very good spiritual person, but I kinda think that your successful CML treatment response is happening for a reason above and beyond a TKI doing its job.  You know?

Just following you on the board has shown me how strong you are - you provide so much support for so many people out here, and I admire it greatly.  Stay strong, and you will absolutely be in my thoughts...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#30 NotJack?

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Posted 01 March 2012 - 09:55 AM

Your message said that you came here randomly by a google search: ( "I am so sad"), and gave no mention of any connection to us other than this random search.  If your mother is suffering I wish her well.  If you are suffering, I wish you well.  If you are just trolling for "lost souls", you have said your piece, now please move on.   This is all that I care to say on the subject,  take care, Jack


Jack


#31 mikefromillinois

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Posted 01 March 2012 - 10:40 AM

My sentiments, exactly.  Looks like Muslim's first post has been deleted.  Adding my two cents...I believe that spirituality in any form is very important in the treatment of CML and many other illnesses.  An old saying comes to mind, "There are no atheists in foxholes".  I would extend that to "...in foxholes or in cancer centers".  "God" takes on many forms to each of us in our individual lives - I don't think that it's important which faith someone subscribes to.  I think what's really important is that we draw strength from some God.  I have no problem with someone mentioning God on this discussion board.  Truth be told, I find it uplifting.  In the case of this particular poster though, in the context of both his posts, it appears as if his motivation for joining us is primarily to advance the interests of HIS faith.  Religious spam, so to speak.  Just my opinion.

Wishing everyone good health, many happy days, and the blessings of your God - whoever that God may be...

Mike 



#32 Susan61

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Posted 01 March 2012 - 05:11 PM

Hi Jack:  I do not mean to be questioning anybody on here about things, but this message from Muslim came up on my regular e-mail as from the L& L Boards I could not open it.  Told me it was unauthorized, so I deleted it.  Now I see it on here. If this is legitimate, then I wish his mother well also.  Very Well Said By You.

Susan



#33 Susan61

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Posted 01 March 2012 - 05:30 PM

Hi Lucky:  I have been so busy, and have not kept up with my messages this week.  I am so sorry about your wife's brother.  There are no words when something like this happens to someone so young.  My prayers are for you and your wife to be able to get through all of this okay.  She surely has had a lot to endure.  I hope she knows that your going to be just fine, and that she is not worrying about your CML.  You are going to be her strength now to help her.

God Bless The Whole Family

Susan



#34 Muslim

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Posted 01 March 2012 - 05:42 PM

My friend you really misunderstood me I will tell you the story . I am so convinced that Allah is the healer and I am so convinced that Islam is the truth . I am not trolling for "lost souls" as you said . I have the solution for all patients which is I slam . Believe in Islam and ask Allah for the help he will cure you . My friend because I have this idea

I am always searching in Google for those people who are suffering to provide them this solution . I  don't exploit them I just tell them the solution and the decision up to them . For this topic I searched in Google and I typed these word I am so sad and I chose  the searching tools ( before 1 hour )  this happened yesterday and I came here to provide the solution for this man . and I found by chance that this forum is about lymphoma and this disease with my mother and she is  good now and thanks for Allah . I ask you my friend and all people to come to Islam where your life will get better this what I wanted to say  so please don't misunderstand me . I am not exploiting you or any one.  Allah gave every one a mind that he can think and everyone know what is true and what is wrong . I advise you and all non Muslim to read about Islam and to read Quran and then judge don't judge by what media says because Islam teaches good morals and it is so logical .

I hope the best for you and for all patients 



#35 CallMeLucky

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Posted 01 March 2012 - 07:24 PM

I'm not your friend and apparently you misunderstood me when I asked you to not contact me again.  I do not know how to be any clearer.  Your beliefs are your own, they are not mine, I am not interested in them.  I find it exceptionally offensive that you would intrude on conversations that have nothing to do with you and use it as an opportunity to push your religious beliefs.  For the last time - please go away.


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%
 

 


#36 Lizzybee

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Posted 01 March 2012 - 09:28 PM

I'm so sorry for your loss.



#37 Happycat

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Posted 01 March 2012 - 09:43 PM

Mike,

Ha!  Religious spam - an apt description!

Traci



#38 Muslim

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Posted 01 March 2012 - 11:35 PM

You still my friend and I will not contact you , and I will say as Allah said in Quran :

( And there is not upon the Messenger except the [responsibility for] clear notification )



#39 SB3

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Posted 02 March 2012 - 09:41 AM

Lucky, I am so very sorry to hear about your brother-in-law. Sometimes life doesn't make any sense. I wish you and your family much strength in the days ahead. I hope it's some comfort to you to know that so many people are thinking of you and your family.



#40 Ted

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Posted 03 March 2012 - 11:08 AM

Lucky,

I'm very sorry for your loss, stay strong.






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