5 replies to this topic

[mck_001]

Is minor shortness of breath on Sprycel cause for concern?  It comes and goes and my oncs do not seem concerned.  I also notice that I am having edema coming and going, but my weight isn't fluctuating dramatically (a couple pounds up or down is pretty normal for me).

Also, I'm waiting PCR/FISH results. Can I even trust a PCR value if they are so varied? I've had two PCR values, one was known to be unreliable because it was super low while my FISH was 90% and the other one came back at 1.89.  My oncologist explained to me that there are so many steps that mistakes at one stage of the process and just time alone can inaccurately produce a low value, which is likely why my initial PCR at diagnosis was mistakenly so low. If my PCR comes back undetectable, can I really celebrate or assume it was another mistake like my pcr mistake at diagnosis?  Man, I don't mean to sound so much like Eeyore....I just am not very bubbly while waiting 2-3 weeks for big results. 

[hannibellemo]

MK,

Did they do a baseline chest x-ray before you started Sprycel? If you're concerned they can do another and compare but that doesn't always show a PE. Some have said that an x-ray while lying down is more helpful. Shortness of breath is a side effect without PEs, too. Everything is always so worrisome with this disease. Good luck, MK.

When blood is drawn for PCR to be sent away make sure you always have the draw at the first part of the week rather than the end so it doesn't end up sitting around over the weekend. That will help with accuracy I'm told.

I'm not sure why it takes so long to get PCR results back. My blood is hand delivered to Mayo when I have the PCR done on times I see my local onc and at Mayo when I have an appt. with my onc up there. It never takes more than 2-3 days to get the results when the blood is delivered and I get it back the same day when I go to Mayo. So it obviously does not take a lot of time to actually perform the test.

Trey can you shed some light on this?

Pat

[starlago]

MK,

If concern loves reassurance, I also experience shortness of breath and occasional edema - particularly in my face.  Likewise, my oncologists are not concerned.  I also wait 2-3 (usually 3) weeks for my cytogenetic and molecular results (MD Anderson).

As for trusting the results, I have no reassurance - I rely on my  blind faith!!

[Trey]

The PCR test is done within a day or so, and then comes the bureaucratic process of reviews by people who each let the report sit in their inbox for days at a time before reviewing it and sending it on to the next person.  The bureaucracy is responsible for 90% of the PCR reporting time.

Can you trust a single PCR result?  Unfortunately, no.  Can you trust a series of PCR reports?  Yes.

[PhilB]

Actually what Trey describes is something close to the 'ideal world' scenario.  In real life add in a few more days  for sending the report to the wrong person entirely, or not sending it at all until you chase your doctor and your doctor chases the lab...

[CallMeLucky]

I'm on Gleevec, but shortness of breath is one of my "cycling" side effects.  Rolls in for a couple of days and then it goes away.  Doesn't really bother me that much, just notice that I find myself forcing deeper breaths and I feel like no matter how deep a breath I take, it just isn't enough.  I'm not saying that you don't have a PE and you should certainly follow up with Dr if you are concerned.  I my case I just think it is one of those things that comes and goes.  You could try cutting way down on salt and see if that helps.