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Feels like it is happening all over again, but worse


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#1 CallMeLucky

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Posted 19 January 2011 - 08:25 AM

The last seven months have been difficult, but I think I have been adjusting well.  I've gotten to the place where I feel there is a good chance I will survive with CML for a long time and my overall quality of life will not be too bad.  I've researched, read, and thought about CML to the point that I have started to get tired of it.  Things were settling down and I was feeling ok.  Last night when I got home, my wife told me she was going to the Dr today because she found a large lump in her breast.  I'm trying to be calm about this, but after she went to bed I found myself sitting on the floor of the bathroom, sick to my stomach.  This can't be happening again.  All the fears I had when I was diagnosed are back, but they are worse.  I can't even reconcile the thought of her being sick or losing her and what about our little boys?  I'm trying not to get too far ahead of myself and let my mind run away with things that I know are being driven by fear but had this happened a year ago, I would have thought, wow this is scary and I really hope that it is nothing.  I would have thought about the possibility, but deep down I would have felt it was not possible, that she is young and healthy and something like that wouldn't happen to us.  But now I know better, I know that this does happen to people like us and it doesn't matter how healthy you think you are or how you look in the mirror, or how good a person you think you are, none of it matters.  Everything you live for can be shattered in a flash.  In my case, I guess I got lucky and got the "good cancer".  For all my unhappiness with my diagnosis and life long prognosis of taking drugs with side effects, it won't be anything compared to what she could be facing.  I'd like to believe that there would be a one cancer per household rule, but I know that is not the case.  I also know I have to slow down and get control of myself and not let the unknown get the best of me.  Most lumps are benign, this came on fast, she did not have this lump recently.  It has gotten fairly large (think medium size grape) in a short amount of time and it is painful and tender.  These signs would suggest it is more likely a cyst than a tumor and all I can do is hope and pray with everything I got that is all it turns out to be.  It's just that with what I have been through the last seven months has really shook me up and just when things seemed to be settling down to be hanging on this and waiting yet again on test results to tell you whether or not you are going to live or die is just too much to bare from moment to moment.  I know I have no control over this and just have to wait to see what it is.  Before I had CML I thought my life was OK, I was never really that happy, but I knew my life was ok, after CML, I realized how good my life was.  Just yesterday I was thinking that having CML sucks, but life is ok, today I realize how good I have it.  I know there was no turning back from CML, there was no "lesson learned, now you get to go back to the way things were".  I just want this time to go back to the way things were yesterday - lesson learned (not that it matters I suppose)


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 jsmiddiebrush

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Posted 19 January 2011 - 08:38 AM

You're right, it does sound like a cyst, but the unknown is extremely scary and difficult!  Please let us know what your wife finds out, we're thinking of you. It sounds like you're in a pretty good place to be supportive of your wife, whatever the situation.



#3 VickiW

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Posted 19 January 2011 - 08:54 AM

Take a deep breath.  Ok.  Now, think of how she was there for you when you got THE news.  Got it?  Ok.  Now, hold her hand and head for the doctor.  This one's all about her.  If it is that large, suddenly, it is most likely just a cyst but being a female myself, I know all too well how finding a lump can cause an immediate "Oh #*&%@" in the strongest of us.   When my hubby had the prostate scare, I certainly didn't want him to have cancer, but I actually relished the switch in roles.  For a time the focus was off me and I was able to try and return all the love and support to him he had given to me.  Fortunately, his scare turned out ok, just like I will pray your wife's does.

Keep us posted, ok?   We are a community of friends here, and we really do care.


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#4 reedgirl

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Posted 19 January 2011 - 09:46 AM

Lucky....Praying your wife just has a cyst that can be drained, and that all will return to the "normal" you were just getting around to living.  What a horrible terrifying situation you are faced with, but as the others have stated, just try to hang in there and be strong for your wife and children.  We are all here for you and will give you the strength, support and encouragement you need while giving it all to your wife.  You don't have to face this alone, we're all behind you holding you up.  Your wife knows the battles you face, she just needs you there physcially and you can be, words don't need to be spoken just be there, sit with her, hold her hand..she knows you love her.

Please let us all know how things go.

Audrey



#5 CallMeLucky

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Posted 19 January 2011 - 11:38 AM

Thank you for the support, I really appreciate it.  I'm trying to keep a level head, I just feel like I am hyper sensitive to this topic and the thought of this happening would be one of my worst nightmares, I would rather I wind up with a secondary cancer than see her sick.  So far things are looking ok, but we don't know anything yet.  I offered to go to the Dr with her, but she said she would rather just go herself, she said if I go with her it makes it seem like a big deal and she would just prefer it not be a big deal and just go check it out.  I understand where she is coming from and respect her wishes.  She said I could help by jockeying the kids around today while she goes to the appointment.  She just called me after she finished up with our GP, the same one who caught my CML, she told her it felt like a cyst and she was not too worried about it, but understood why my wife was concerned because of the location.  She seemed to feel it was a sebaceous cyst that may be infected and prescribed an anti-biotic.  She then told her given her age and the fact she should be getting a mammogram in the next year or two anyway, it was probably best to go get the mammogram now to rule out anything unlikely and have a baseline for future.  I do like this doctor, she is certainly thorough, my WBC wasn't that high and could have dismissed by a Dr as not that big a deal and told me to come back in 6 mo or something like that to see if it changed.  She got right on top of it that day and had me in the hematologists office a couple of days later.  Well now she has my wife at the radiologist this afternoon to do a mammogram and ultra-sound.  I'm glad she is getting all this done today so we don't have to sit and wonder - I really really hope her outcome is different than mine was.

Thanks again and please keep your fingers crossed for her.


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 janner25

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Posted 19 January 2011 - 02:00 PM

I will keep you and your family in our prayers. Please let us know how she makes out today - and the results of everything.



#7 Tedsey

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Posted 19 January 2011 - 05:20 PM

I am here for you too Lucky.  All I can say is that I understand whole-heartedly how you feel.  My daughter sustained second degree burns at her grandmother's last Sunday while I was out shopping.  She just turned 2.  The thought of losing her on top of all we have been through as a family this year, was horrendous.  Sending all my best to you and your wife.  Praying this is nothing.  Please post how things turn out.  I care very much and I know lots of others here do too.

Teds



#8 CallMeLucky

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Posted 19 January 2011 - 06:19 PM

Thanks again

So far so good, we have been very lucky today and they have been moving her through everywhere, I guess with the bad weather maybe they have some cancellations and openings.  She went in for the mammogram and ultra-sound.  The results were read by a Dr on the spot and discussed with her, which I found strange, but welcomed it.  Usually it is a tech and they have to forward results to Dr, sometimes if you're lucky the tech will tell you what they think.  In this case they did the test and after she was done they sat down with her and went over the results.  The doctor said he couldn't say 100% it was ok, but from what he could see it was not cancer.  He said she has to go for an aspiration for the definitive result, but from the mammogram, it did not look like cancer.  He said the coloration of it and the way it sat very close to the surface, and the fact it wasn't deep in the breast tissue, but along the edge of the breast, almost on the top of rib cage, he couldn't even see it on one image because it was too far off to the bottom.  He said it looked more like a trauma than anything else (I thought great, now they are going to think her husband beats her).  He said it was necessary to get the aspiration but at this point it was not something to worry about.  So she is going to start the antibiotic and make an appointment to get the aspiration, hopefully in the next few days.  I'm going to be unsettled until someone says 100% it is fine, but I think I'll be able to at least sleep tonight.  On the up side they looked at both breasts and didn't find any other surprises.  At this point hopefully we get away with a brief scare.  I hate that I react to something like this now, it's just the thought of someone else in this house having cancer is something I can't get my head around.  God willing I won't have to.

Thanks so much for being the sounding board.  I didn't really have anyone else I could discuss this with - I appreciate my virtual friends.

P.S. Tedsey - so sorry to hear about the little one, I really hope she is okay and feels better soon.


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%
 

 


#9 khenry

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Posted 19 January 2011 - 06:38 PM

Hey Lucky,  I can certainly relate to the constant feeling of uncertainty.  It is a horrible feeling when you live your day to day life in fear of the unknown then, you fear what is next.  I am glad the Dr. is taking good care of you both.

Kristen



#10 jenn

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Posted 19 January 2011 - 11:08 PM

Hey Lucky...Hang in there till u get the results,and I also agree w/ the 1 person per family rule !!!! And the good person,never hurt anyone,kind to animals,pays my bills on time,pays my taxes,donates to good causes,overall good guy !!!!!! etc......It's not fair as far as I'm concerned ! 






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