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#1 pammartin

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Posted 23 March 2012 - 12:11 PM

Hello all,

I have been sitting here reading several posts for the past few hours, and to be quite honest I even sent in a request for a post to be removed, the request was denied by LLS, FYI it was not the one that was removed, not that it matters.  I love this board, and it has offered me more support than any other avenue I have found, including professionals.  That being said, I have become disillusioned by the content.  Yes there are serious things happening, advice to be given, and I will admit the laughs were/are the best part, but situations just do not seem sincere to me.  I realize no one knows any one, (that could almost be a tongue twister) but in my opinion a modem of trust is expected, and I no longer believe that is happening here on the board.  To everyone that has offered advice, kept me grounded when I wanted to jump off a cliff because I have been so frightened, and especially support, I want to thank each one of you.  Can't say that enough but it is all I have.  I am annoyed with the drama that seems to surface every day.  For a short time I fell into that drama, and was disgusted by the possible falsification of diagnosis, symptoms, and monetary requests, but today, while all this was heading toward a conclusion I finally decided it isn't worth it.  I have posted my thoughts without accusing any particular person, and I have pushed the idea please do not donate to anyone unless you are sure they are credible, it is so easy to become wrapped in another's heartbreak real or fabricated, especially if one is suffering his/her own.  This is all I can do.  To those of you who do have CML or any form of this damned cancer we live with, I am with you, but today, I am done with the drama, it is not worth it and I am disappointed in myself I allowed it to infiltrate my life.  Each one of us know who we are, honest or insincere, 'It is what it is'. 

Pam



#2 Lizzybee

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Posted 23 March 2012 - 12:32 PM

I must be oblivious, because I haven't seen any requests for money on this board.  But... I don't open threads that don't seem applicable to me or don't appear to be questions that I might be able to help with.  Even when I do read a thread, I don't always read every response due to lack of time.  So I'm sure I miss a lot.  I'm sorry you're disillusioned.  Unfortunately, drama and dishonesty are part and parcel of internet chat boards regardless of the topic.  All we can do is try not to get sucked into it. 



#3 CMLSurvivor

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Posted 23 March 2012 - 01:11 PM

It is heartbreaking to hear about people misusing this site and making other people so unfortable that they feel the need to leave!!!! I really wish people would be more honest and not feel the need to make stuff up. Suffering through CML or any type of cancer or life threatening illness is upsetting to the person it is happening to and the family members that watch there loved ones going through it. I am hopeful that LLS can weed through the board and clean it up.  Try not to lose hope on this board it really is filled with good information and helpful people.



#4 hannibellemo

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Posted 23 March 2012 - 02:22 PM

Hi, all.

I don't know what is real or not about any post. I try not to be naive, but I generally take them at face value. This is not the first time there has been extra drama from a new poster, and I'm sure it won't be the last. I will not, however, allow this to affect the way I deal with anyone on this board.

I love this board! It is my lifeline in times of stress, fear, and, unhappiness. There have been a few over the years who have been more "takers" than "givers" but the overall balance has been very good. When I am running on empty there are plenty around to fill me up and I hope others feel I help do the same for them. Any support I give to a person, whether truly needed or not, does not take anything away from me or the reason this board exists.

I feel we're pretty good at self regulating and if something slips though occasionally, so what?

I'm reminded of the times after school when some friends and I would call random numbers and give such a sob story to the unsuspecting answerer. I'm not proud of myself now when I think back on it but it was so funny at the time. If this happens on here it's really no different - it's just that with the technology of the day it is so immediate and has the ability to affect so many at one time.

I hope I am making myself clear, please don't make the mistake of assuming  that the fabric of this entire board is in peril because of anything that may have happened recently.

You are too valuable to lose every one of you!

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>


#5 CallMeLucky

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Posted 23 March 2012 - 04:55 PM

Pat spent years feeling guilty about the prank calls, but little did she know she probably saved an entire town that day

fridge.jpg


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%
 

 


#6 Marnie

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Posted 23 March 2012 - 05:38 PM

I'm clueless.  I don't even know what post is being referred to.  I guess that's a good thing. 

My refrigerator was still there when I went to look for my bottle of wine.  But, alas, the bottle was nearly empty!

Marnie



#7 hannibellemo

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Posted 23 March 2012 - 07:59 PM

That is either a good thing, Marnie, or a huge tragedy, depending on who drank it!

Have a good weekend!

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>


#8 jrsboo

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Posted 23 March 2012 - 10:04 PM

Mwhahaha.........I drank it!  While sitting in the hot tub!

I too have never seen a request for money.  Perhaps these odd posts are not on the CML threads, but on one of the other leukemia strains. 

There was the one odd answer to Lucky about turning to Islam, but that was so obviously a scammy type thing I paid it no attention.

It's nice here the dark, with all this wine..........and bubbles.

Caroline



#9 Marnie

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Posted 23 March 2012 - 10:55 PM

Ah hah!!  That explains the lack of wine in the bottle. . .I assumed (from my headache) that I had consumed the wine. . .but now I know the real culprit (Caroline)!!  No matter.  It was easy enough to open a new bottle of wine.  I have a case of it in the basement.  I am now officially on Spring Break. . .

Marnie



#10 Guest_billronm_*

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Posted 24 March 2012 - 01:19 AM

Hi Marnie,

   I'm not officially on spring break, but Ron definitely is. He's already got the front yard cleared,the Rose bed cleaned out and mulched, and that was before I even got up this morning. And he bought another rosebush and planted it. Plus he planted lettuce,spinach,and onions, in his garden. He's still hyped up from Florida. You can tell he wasn't born in Erie. He's been riding the bike for over a week! It's still to cold for me. Now that we have 2 computers I use the laptop and he uses the desktop. And since we paid off our bike last summer, he has been checking into the Gold Wings. OHOH!  When he first talked about retiring all he talked about was moving to Sanibel(that was before I even started dating him.) Now with my cml that put a hold on our plans. I would love for him to buy a Goldwing but around here there isn't a lot of good seasonal weather to ride one. Help  Billie



#11 jrsboo

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Posted 24 March 2012 - 11:15 AM

We've had 2 goldwings.  Nothing else like them, we LOVE them, #3 is in the near future.  (We sold them at various times for the money or lack of use, not mechanical problems, remember Honda's GO, Harleys STOP.  Every time you see someone on the side of a road with a motorcycle, it is usually a HD.

The goldwing is like a barcolounger on wheels, even has small pockets for cookies and such for the passenger.  LOVE 'em.  We did a 9 day 10 state tour a few years back.  Such fun.

Caroline



#12 pamsouth

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Posted 24 March 2012 - 03:32 PM

Pat, your post made my day.

"When I am running on empty there are plenty around to fill me up and I hope others feel I help do the same for them. Any support I give to a person, whether truly needed or not, does not take anything away from me or the reason this board exists.""

PamSouth


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#13 pamsouth

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Posted 24 March 2012 - 03:38 PM

JRSBOO,

i want some of what your drinking (dark/Bubbles)  Tiny bubble in the sand, tiny bubbles make me feel fine...  

and I think i'm gona love yaa for a long... long... time...

PamSouth


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