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Still PCRU since new oncologist

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#1 dee145


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Posted 14 March 2011 - 05:20 PM

I was at my onc. office on Friday and I am still at "not detected" and 0.00%.  Has been since the beginning of July with this new oncologist.My counts are   WBC 6.7   RBC 3.64  HGB 11.9  Platelets 255  Glucose 95  Potassium 4.9   BUN 8  Calcium 8.8  AST 19  ALT 14

But I still can't rid of the shakes so I have spent the whole day trying to find a psychiatrist and finally got one but can't get in till the 31st of this month.  Some had 5 month waiting periods.  My onc. says to take my xanax (1mg) every 6 hrs not just when I think I need one that way it stays in my body.  I don't like to but I can't function with the shakes or tremors I feel inside me.  I would be ok (I think) if they would go away other than gaining some more weight that I didn't want.  I was at 110 when I started seeing him in April and now I am at 142 and don't like that. My daughter in law wants me to go to Zumba classes with her, i ask her if they had a senior or slow section cause I don't think I could keep up with the way my legs ache and are weak.  It's a hour long but I would be on first move and they would be done with the class.

Does this mean I can say I am in complete remission now?  I forgot to ask that.  I wish I would of filed a malpractice suit on that other "quack" but was so sick and weak to think of that just wanted to feel better. My new onc. has tried to call him numerous times to have a consult and he won't return the call.   My new one wants to know why he did all that stuff to me, why didn't he say "I am not sure how to handle this CML so we will find you a different onc."  He says he is not a professional if he can't return a call from another dr. when it comes to a cancer patient.

I guess that's it for me just wanted to let every one know where I was at now.

                       Thank you to everyone for advice and info thru my really rougher times, Dee

#2 hannibellemo


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Posted 14 March 2011 - 07:40 PM

Congratulations, Dee. The correct designation is Complete Molecular Response, the 'R' stands for response, not remission.

In other words, your CML is in CMR!

Everyone I've talked to said Zumba is lots of fun! Give it a try and go at your own pace.




"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>

#3 dee145


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Posted 14 March 2011 - 08:12 PM

When you say response and not remission, is that not good? Then what is remission?  This is my 4th or 5th PCR for BCR/ABL1 that came back "not detected" at 0.00%  Don't burst my bubble for me please!!!!!


#4 Guest_billronm_*

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Posted 14 March 2011 - 08:20 PM

Dear Dee,

I am so glad you got the new onc. I haven't known anyone with or without cml to constantly shake like you. But now you're on the right track,and it's gonna get better. Did you get a lot of information about your sons condition? I'm sure there are a lot of websites about it. You're dealing with 2 serious problems right now. I know I would be a wreck if it were me. Maybe you could order gluten free food that would help you a lot. There's a website for everything, We have our own right here it tells you all about sharts, and other really cool info.       Best of luck  Billie                       

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