7 replies to this topic

[hannibellemo]

What could be better than that? PCRU would be, of course, but I'm still MMR at 0.02% so I'll take that!

This raises the question of why it takes so long for some of us on here to get the results back? Granted, Mayo laboratories do the testing right there in house, but when I hear weeks and even months for some? That doesn't make sense when it obviously takes fewer than 7 hours to run the test, so the hold up must be getting the results to the physician and, in turn, the physician getting the results back to the patient.

I've never had more than two tests at MMR, the first time I had the pleural effusion and had to stop Sprycel for a few months. Looking at past PCR results I've always had two consecutive results that were exactly the same before I experienced a drop, so maybe next time I will add another zero to the result. Here's hoping anyway!

Stay warm!

Pat

[Marnie]

Congrats, and here's to that extra zero next time! 

My PCR tests are done locally, though not at the same place as my blood draw. .it goes across town.  I called the lab and talked to the doc there, when I had a concern about the dates of the draw and the test.  He told me that they extract what they need when they receive the sample, but then they hold it until they have enough to run a batch, which can take a few days.  He assured me that the sample is treated appropriately so that it does not degrade, though I didn't get the specifics. 

I had my blood drawn a couple of weeks ago and will see my doc for the results next Tuesday, where we will discuss dosage and figure out a strategy.  I'm bummed that on 50mg I'm still having rash issues, in fact the rash seems worse.  PE seems to be completely cleared up, though I wasn't sure about that for awhile.  Hopefully numbers are o.k. to stick with 50.  I'm just not interested in trying Tasigna. 

New snow here in Denver.  We tried to get up to the slopes for a spectacular powder day. . .but had to turn around because the highway became a parking lot.  I think it probably looked a lot like Atlanta.  3 lanes of cars bumper to bumper and people milling around outside their cars.  That was 3 hours of my life that I'll never get back!  Maybe we'll try again on Sunday.  Most of the Denver folks will be at home watching the Superbowl.  Cross your fingers that all of the good snow hasn't been skied off.

Marnie

[Trey]

You have done well.  Maybe if the PCR weren't done so quickly you would be PCRU.  Just sayin'

[hannibellemo]

Hmm, my next one is in August through the local cancer center, I'll schedule an appontment for Friday later afternoon, that way the Mayo courier will have already left for the day. It won't go up until the following Monday...we'll see what happens then.

On the other hand, it's disturbing to think that when the blood is processed may have much to do with the outcome of where we think we are in terms of response.

If that is truly the case I'm more than satisfied to be a solid MMR.

Pat

[Tedsey]

My blood is shipped from Chicago to NJ.  Talk about a carbon footprint and an anti-logical contract (PCR could be done locally at the university my office is affiliated with--ironically the group, or hospital corporation (whatever) is affiliated now with Mayo too.  MN is closer than NJ!  I know the peds oncology does it in-house at the local university).  So, I am suspicious about the PCRU the last two times (but it has always been sent to NJ lab and the numbers have been going down, so I must BELIEVE, but if I am really just MMR, I can live with that--literally). 

Keeping fingers crossed for the best results for you!

Teds 

[Tedsey]

Bummer about the ski trip (and rash)!  Best of luck next time around.  Hopefully most people will be glued to a TV and not on the slopes!   

Wonder about what extends the life of your PCR until they have a "batch".  If our numbers are really higher than they test, well, we are still here and there doesn't seem to be a hint of progression (as far as shown).  Guess it is enough. 

For the first time in my life, I just don't want to know (I mean if all is OK).  I stress out way too much.  I am way happy living the delusion of PCRU (also because most people, if not all, really are not due to test sensitivity limits).  I find it very hard to go to any doctor now besides the hem/onc (and the dentist-ugggh).  I just don't want to know anything more that is wrong with me.  Knowing is a greater torture than the disease itself! 

Sorry to hear about your recent dental work.  What a total drag (major empathy here)!  Hope all is very well now.  Glad to hear PE is cleared up.  Best of luck with your numbers and dosage!  Crossing the rest of my fingers for you!

Tedsey

[hannibellemo]

Marnie,

I hope you have a great time on the slopes today! My best friend's youngest daughter lives in Breckenridge. She is sitting for her CPA exams in a couple of weeks and she has been a nanny off and on while in school. This past week she had the rough job of taking two little girls skiing every day - and was paid for it - probably more per hour than she will make starting out as a CPA!

I  have noticed that even though my dosage is half of normal I still have GI issues on occasion. I'm not complaining, mind you, just saying....

Go Broncos!

Pat

[0vercast]

Wow, that would really stink to have to wait months for results. I was told by my Onc that I can have my results the next day if I call his nurse. I live a few hours north of the Mayo and the local cancer center has a courier that goes down there every day. It doesn't take them very lon to do PCR. I was told a half-day is all it takes.