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#41 NotJack?

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Posted 08 January 2012 - 06:08 PM

Yeah, seems like your effort should be on getting well instead of getting treatment.  I looked at everything from moving to France or Italy, to  getting a divorce to save my family from the poor house.  Oh well, I guess that bright side of the issue, it did take my mind off of the cancer for a while!  Jack


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#42 pamsouth

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Posted 08 January 2012 - 06:13 PM

Got to go Jack, but yea I have heard some of the sad financial stories.  Doesn't seem right in the greatest country in the world that sends billions of dollars to other countries, when we have a health care crises of our own. So far we are doing pretty good, but that could change at the drop of a hat. 

PamSouth


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#43 NotJack?

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Posted 08 January 2012 - 06:49 PM

Our health care system is ranked 37th in the world by the World Health Organization, not something to be proud of.  France and Italy are 1 and 2.   I think Canada was 31st.  We easily could be first, we spend 3 times more than most countries, and rank 37th.  Admin costs are 30% in our private system,  I think that the VA "socialized" plan has 3%.  Sorry again, I'll stop!  Jack


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#44 CallMeLucky

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Posted 08 January 2012 - 09:23 PM

Teds - If we can agree that the universe is infinite, then it would be impossible for there to not be intelligent life out there.  Of course you also have to factor in that time is infinite and what are the odds that intelligent life is existing at the same time in the universe?  We could talk about this some more, but someone is going to have to bring the chips for the munchies that are sure to follow


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%
 

 


#45 Judy2

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Posted 08 January 2012 - 09:31 PM

I'm still amazed at how the Internet works, never mind the universe!!!

Judy



#46 pamsouth

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Posted 08 January 2012 - 09:35 PM

Jack,

Wow France and Italy number 1 & 2.  I remember, oh it has probably been a two or three years ago.  Oprah Wifrey had on a show where she interviewed people from several countries about their health care.  I was really impressed with some of them.  I know we have heard horror stories about Canada and other countries health care, but I must admit I was impressed with some countries. I am thinking one of the countries I was impressed with may have been in Scandinavia, can't remember.

I like to hear the stories straight from the people, young & old, & handicap,  but she also interviewed the health care professionals.

I think in some countries the health care doctors make more in the states so they come here.  I wish I had taped that show.

PamSouth


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#47 NotJack?

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Posted 08 January 2012 - 10:03 PM

WHO link: http://www.photius.c...ealthranks.html


Jack


#48 Daisy1985

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Posted 09 January 2012 - 02:22 PM

Hi, Jack,

thanx for sharing your experience. I also think it s a good ideea to get some copies of the bloodresults, but so far it was always about the high WBC, the doctor said that this is the priority right now, and I guess he didn t want us to loose our heads in papers and numbers. Once the WBC are better we will be able to work on the rest, too, I guess.

We were also told it s a slow progressing cancer and lucky that we ve discovered it in still in the chronical phase.

Glad to hear that Tasigna does the trick with you, keep it like that!



#49 Daisy1985

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Posted 09 January 2012 - 02:33 PM

Tedsey,

thank you very much for your encouragement and it s great to hear that you re doing so great right now  and you are enjoying taking care of your child again.

Our greatest wish right now is that Tom could return to his life before ( or at least something close will do for now) that he s missing very much.

I think in the beginning it s just a question of searching of the right drug.

These days he caught also a cold or a flue, I don t know for sure but he s not taking any meds since we heard that Paracetamolum is very bad for the liver in combination with Gleevec.

Tommorow it s D day again with the doctor, I really hope we get some good news this time.

Keep you posted

best wishes everyone



#50 Tedsey

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Posted 09 January 2012 - 07:24 PM

Hee, hee.  Cheese puffs are my favorite!



#51 Daisy1985

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Posted 10 January 2012 - 12:38 PM

So we ve been today to the hospital again and we ve got good news!

Gleevec started to work and the WBC dropped from 240k to 105k, yay!

Also the platelets went down from 515 to 319, the doctor said this is also a significant improvement.

The red blood cells have risen from 3,49 to 3,71.

So I guess we are going in the right direction and you guys were right, it needed some time. I m glad to see Tom again more optimistic and I hope it will keep getting better!

best wishes

Daisy



#52 NotJack?

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Posted 10 January 2012 - 12:48 PM

Great news! This is a bit of a rollercoaster we are on--so enjoy the good times--go celebrate!  You never really get used to the swings, but they do get easier to ride out (from my limited experience).  Jack


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#53 tiouki

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Posted 10 January 2012 - 02:57 PM

Woua that's great ! A nice improvement!!

White cells will be back to the normal range within the next weeks/months, and platelets will probably decrease some more too.

You can be optimistic everything is normal tell him he'll play soccer in maximum 4-5 months

Cheers

Pierre



#54 Daisy1985

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Posted 10 January 2012 - 04:53 PM

Well, he cannot wait for that! Even now he s watching the match of his team.

The good news really made our day, Tom left the bed and started to make plans again, I see that a good mood makes wonders!

Keep up putting that CML to it s place!



#55 CallMeLucky

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Posted 10 January 2012 - 05:37 PM

This is very good and shows the Gleevec is working.  It is very hard because we sit on pins and needles but you should know know that CML doesn't typically do anything in a hurry, they use the term chronic in the definition for a reason.  Try to remember how this news has changed your mood.  Inevitably something in the future will spook you, maybe a test result that's not as good as you were hoping for or something like that and recognize how sensitive you are to the information.  Over time you will get better control of that and it will help you to be more calm when things are rocky.

Hopefully it will be a smooth ride going forward....


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%
 

 


#56 Pin

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Posted 10 January 2012 - 06:53 PM

Daisy, that's wonderful news! I'm glad this next test is showing improvement for him.

Lucky is so right, we hang on to every bit of information the doctors, the internet, and other CMLers give us, every test means so much to us. Sometimes we interpret the information as good, sometimes bad, and sometimes we just get worried about absolutely everything and later wonder what we were fussing about. I'm looking forward to a day when I don't get quite as thrown by the tests. So far, I've improved in my worry about other side effects and stuff, but I haven't had enough tests to even begin to "get used to" them yet


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


#57 pamsouth

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Posted 10 January 2012 - 08:56 PM

Interesting that  was #18 United Kingdom,  Canada 30, and US #37.

PamSouth


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#58 pamsouth

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Posted 10 January 2012 - 09:01 PM

Daisy, Great.

True about waiting for test result is sitting on pins and needles and then not what we wanted then waiting some more.

Been diagnosed since 2005 and now and then my panic button gets pushed too!

PamSouth


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