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Just Hit My 12 Years of PCRU


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#1 Susan61

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Posted 26 July 2014 - 08:17 PM

Hi:  I did get good news on my PCR test, but my other numbers are all over the place.  My doctors have come to the conclusion that I am bleeding somewhere like a ulcer.  My HGB is down to 9.6, and my WBC that was always around 3.5 has gone up to 5.5 in a few weeks along with a increase in my Platelets from 119 to 239.  So something else is going on with me now.

     I did get the permission to lower my dose of Gleevec to 200mg, but I am going to wait till I find out what this other problem is.  She wants me to repeat the PCR test etc. in Oct rather than Jan to see how I do on the 200mg.  My concern is I do not want two things interfering with my results.  If I stay on the 400mg for now I can see why the numbers are doing what they are doing.

    I am just at my wits end with all that has been happening now for the past few months.

    I need prayer more than medication right now.

    I was wondering  if anyone else has run into something like this with a Ulcer Etc.  I am also on the blood thinner for the blood clot in my leg, so I am being monitored on that also.

Thanks

Susan



#2 Marnie

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Posted 26 July 2014 - 10:54 PM

Susan. . congratulations on the PCR and good luck with all of the other things goin gon.  I'm glad that you're going to be trying a lower dose, and it's smart for your doctor to do an earlier PCR test.  I will be keeping you in my thoughts and sending good vibes your way. 

 

Hang in there.

Marnie



#3 gerry

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Posted 27 July 2014 - 07:49 PM

Hi Susan,

You're right in holding off your decrease of Gleevec until you get this other thing sorted out. The first lot of blood tests following a decrease are a bit stressful, so you don't need that on top of what's happening.

Hope the doctors sort out what is going on and it is easily managed.



#4 Susan61

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Posted 28 July 2014 - 02:25 PM

Well, I am finally getting in to see my Gastro Doc on Wed.  Then I guess I will be scoped to see what the issue is.  Thanks for the positive feedback.  I can really use it right now.j

I am anxious to cut back to the 200mg. to see how I do.  I will do that as soon as I know what is going on in my blood.



#5 Marnie

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Posted 28 July 2014 - 04:53 PM

Continuing to send positive vibes your way.  I'm excited for you to cut back to 200 mg.  I hope you'll keep us updated. 

 

Marnie



#6 pammartin

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Posted 29 July 2014 - 06:34 AM

Susan,
Excited about your positive results, sending positive thoughts and prayers to you for your other issues. Please keep in touch.
Pam

#7 Rissa

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Posted 29 July 2014 - 11:14 AM

I hope everything goes well for you and this turns out to be something that can be taken care of easily.  I'll be thinking of you.

 

Rissa



#8 hannibellemo

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Posted 29 July 2014 - 03:24 PM

Congratulations, Susan! Your WBC and platelet increase appear to be good news (even though it seldom seems like that to those of us who got used to the "lower" normals and considered true normal to be the kiss of doom)   :lol:

 

Your Hgb is troubling though. Mine is generally between 12.5 and 11.5 so I would be concerned if it dropped like that. I assume they will also do an occult blood test to check for intestinal bleeding, too; least invasive and that would be a typical way to bleed and not necessarily realize it. Less invasive than sticking a tube down your throat.

 

Hope they figure out what is going on. Aren't you taking warfarin, too (or at least some form of blood thinner)? 

 

Good luck,

 

Pat


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>


#9 Susan61

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Posted 29 July 2014 - 05:11 PM

Hi Pat:  Yes, I am on warfarin for that blood clot in my left leg.  Thats why I am so overwhelmed.  I go in the hospital the end of May for the clot right after I had gotten shots in that knee for my Arthritic Knee.  Then I started with the weakness and dizziness in June, and had to get the Pacemaker by the end of June.  Then this problem starts for July.

     My frustration was that the doctors looked at the normal WBC and Platelets, and I said but look at my past 10 years of low platelets and WBC.  Why would it just start to go up gradually over the course of 2 months.  That to me is a indication of something wrong. I drive my doctors crazy sometimes because I watch everything so close.

    I will know more after I get the EGD which will probably be next week.

    My doctors said I must be bleeding somewhere.  I have no blood in the urine that is visible to the eye, and they did the stool sample in the hospital with no blood showing.

    I just want to find out what is wrong, and I do not want anymore surgery.

Susan



#10 gerry

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Posted 29 July 2014 - 06:51 PM

A lot of doctors haven't yet realised that sometimes the patient knows something isn't right and they should be following up on it.

It took nearly a year before I was sent to a hematologist and that was only because I kept mentioning it to the docs that I didn't like my slightly elevated basophils, I had no other indication of CML.






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