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#1 Marnie

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Posted 25 July 2011 - 10:41 AM

O.k., Trey, this one's for you. . .

Went in for PCR test this morning.  They did the typical draw.  Was in the parking lot putting on motorcycle gear (good thing I'm slow), when the lab tech came running back out because the doc wanted another draw for a fusion test (green topped vial).  Lab tech tried to explain what and why, but I couldn't get much info out of her.  Did some online research and found the test, but didn't get much info that helped me out.

Is this a test they should have been doing all along?  Was it necessary?  Is it something that can even be compared to current numbers, or will it be something to use as a new baseline?  The tech said that the doc has recently started doing this test with all of his patients.

Marnie



#2 Susan61

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Posted 25 July 2011 - 11:54 AM

Hi Marnie:  I tryed to look it up also to see if I could learn something new, but all I got was testing to see if you evolved from a chimpanzee.  Then it looked like another test just to back up the PCR testing to check for the translocation of the chromosomes.  I am interested in what Trey says also.  See why I trust Trey rather than my own research.

Saying a prayer that this test comes out really good for you.

Susan 61



#3 Marnie

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Posted 25 July 2011 - 12:07 PM

Well, that explains the oddities of great, great uncle Albert.  He was always picking bugs out of his hair and eating bananas.  We just thought he was a bit eccentric!  Thanks for clearing that up, Susan!!

Message was edited by: Marnie



#4 Susan61

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Posted 25 July 2011 - 02:47 PM

HI:  I know your anxious for these results, and when I saw that comment I just had to give you a good laugh to get your mind off of all this blood work.

I have my  appointment tomorrow afternoon for my PCR results at my Oncologist's office.  We all go through that anxioius waiting time.  I will be posting tomorrow night.

Susan



#5 Trey

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Posted 25 July 2011 - 05:22 PM

Green top is for FISH.  Fusion means the t(9;22)(q34;q11.2) fusion chromosome.  With your PCR being rather low, it is likely a waste of time at this point.

Here are some links which are of absolutley no value:

http://greentopmarke...are-the-issues/

http://blog.greentophuntfish.com/

http://www.icefishgreenbay.com/

http://www.saucygirl...h-salad-on-top/



#6 Marnie

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Posted 25 July 2011 - 05:51 PM

When I saw online, that green and FISH went together, I thought. . ."What the hell??   I didn't ever get FISH tests when they might have been useful, and he's doing one now??"  But then I thought maybe green was used for other tests, too.

Secondly. . .your links were, indeed, incredibly valueless, though I may pass them on to a flyfishing friend.  You crack me up.

Didn't see any moose on the ride yesterday, but did catch a glimpse of a somewhat scraggly mountain sheep.  She did not seem concerned, so I think she had been unmolested at that point in the day.



#7 GerryL

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Posted 25 July 2011 - 07:24 PM

Hi Marnie,

Good luck with your results, hopefully you've achieved or gotten closer to where you want to be.

Gerry



#8 Marva

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Posted 25 July 2011 - 08:00 PM

Hey, Trey

   I think we talked before. I have to go to the doctor on friday,but my face have broke out like crazy with bumps. I have CML and have been on this Tasigna since May 26, have you heard of hair lost. I have been talking to my doctor about feelin tired and back problems. Dont mean to scare anyone newly takin this med,but man I just need to know what others are dealing with,thanks.



#9 hannibellemo

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Posted 25 July 2011 - 08:52 PM

I don't know, Marnie, the tuna salad on the veggies looked pretty good. That was an awful bugly fish in Green Bay, though. Probably scared by a buffalo when it was just hatched.


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>


#10 GerryL

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Posted 25 July 2011 - 08:54 PM

Hi Marva,

I'm on Gleevec, but I know a few people here taking Tasigna have experienced rashes, hair loss and fatigue.



#11 Trey

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Posted 25 July 2011 - 08:58 PM

Marva,

The face rash and hair loss are fairly common complaints about Tasigna.  The hair loss will usually stop and reverse itself, but it could take a while.  The rash can be more stubborn, and may require seeing a Dermatologist.  Steroid creams can help, but they are not recommended for the face except for short term and low dosage.

Here are some previous discussions about these two issues:

http://community.lls.../message/100507

http://community.lls.org/message/43163

http://community.lls.org/message/76817

http://community.lls.org/message/70564



#12 Trey

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Posted 25 July 2011 - 09:06 PM

Marnie,

So glad you so no value in my links.  They indeed were worthless, and maybe that is being too kind.

But I have one note of warning.  If your lab tech wants to collect your blood in one of these green containers, you should probably decline politely, or maybe run like a moose out of hades:

http://www.depressio...epression-glass



#13 Pin

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Posted 25 July 2011 - 09:19 PM

Oh, I don't know - the salad looked alright...


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





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