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Playing the waiting game.

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#1 gunner


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Posted 13 November 2013 - 07:46 PM

Five years in.

Had labs drawn Monday, I will meet with the Doc after 2 weeks. I have been doing this now for a couple years. It works well because you have the big test results (pcr) to discuss, rather than if something shows up we'll give you a call.

It doesn't get any easier waiting for the results.

I didn't think I had been gone from the board for so long, but I can't remember when I was on last. I felt like I was getting caught in a OCD habit of checking the board so often.

I decided a couple years ago that I was not going to just wait for the other shoe to drop, and that it was time to get on with things. I started planning my retirement. Then along came the opportunity for a big career change, and suddenly I have retired from one place and started at another! So much for the life of leisure!

#2 GerryL


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Posted 13 November 2013 - 07:52 PM

Hi gunner,

I do the same thing with my doc, he normally likes his patients to get their tests done on the day you see him and the he rings you a couple of weeks later. I figures I wanted to feel a bit more in control of the situation, so have bloods taken a few weeks prior and get a copy of results sent to me from my GP. I have my results in my hand when I'm talking with my Specialist.

Congratulations on the new job.

#3 Trey


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Posted 13 November 2013 - 09:38 PM

Leisure is overrated.  OCD is only obsessive if it is not compulsive.  And checking in with us here is merely a way to verify you are not a lone hitchhiker in the Golgi Body solar system.  Welcome back to the highway of recovery.  There are moose and buffalo to see along the way.  Helmetless biker chick teachers on BMWs will try to run you down, but you will not be deterred.  A 1932 film version of Madame Butterfly plays on a continuous loop in the background while girls from Iowa and guys from Britain speak of squirrels named Herodotus.  No, my friend, you have not merely been away.  You have missed out.

What was the question?

#4 Susan61


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Posted 14 November 2013 - 03:20 PM

Hi:  Glad you joined in again.  Hope you stay with us.  ITs not a OCD to check the boards.  You say your in for 5 years now.  You could be helping others, especially new people who are looking for answers and so confused as to how treatment works for CML.  I can still remember when I was first diagnosed, and really needed somebody who was going through it also to help me cope and understand.

      I also go for my PCR test 2 weeks before I go to see my doctor, so we can discuss it right then and there.

     Sounds like your doing very well with your life and CML.  Please keep in touch.


#5 mariebow



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Posted 14 November 2013 - 05:25 PM

Susan I agree with you, I was a mess almost two years ago, and this board really helped me deal with the initial diagnoses,  I get email notices when someone one on the CML board post a question or answer.  If I can help someone else I want to.  I have heard others say that they do not come here a lot of it is a long time because they want to forget that they have cml or something to that.   Well if they really do forget, well then good for them.  I cannot forget that I have CML, because of my meds,side effects, if not  much, and now I am finding out that people on tv is getting diagnosed with leukemia,my daughter who is a RN who works in home health saying that one of her patients had CMl and it turned to AML and it seems like everyone you look around someone has been dx with Leukemia.

#6 hannibellemo


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Posted 16 November 2013 - 10:20 AM

Hi, Gunner!

Welcome back! I hear the Pyrotechnics Guild is holding their annual convention in Mason City this coming summer. Let me know if you are going to be there and let's try and meet up for coffee, again! With your new career change are you still an Iowan or have you gone over to the dark side?

Glad to hear things are good with you.




"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>

#7 gunner


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Posted 19 November 2013 - 05:44 PM

Hey, Pat!

I plan to move in for the week when the Guild is in Mason City, but we'll have to see. I also picked up a farming habit along the way and it tends to be rather jealous of my time.

I am working in Ames now. It has been a big change, but I think it is a good change. Somehow I went from working one job and being on the verge of retiring, to working two full time jobs plus farming! Now I have closed out the first job, and the farming is put to bed and all froze up.

Another week till the results come back, hopefully everything stays the same.

Since I have dismissed that first job I have lost 20 pounds, dropped one of my BP medicines, and cut back on a potassium supplement. I feel a lot better than I used to. I think the combination of metoprolol and Gleevec was beating me up.

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