PETscan NOT USABLE huh???!!!

[SoCalGal]

Has anyone ever had a petscan that was deemed not usable? After waiting almost 7 months for a pet/ct, (to avoid so much exposure and because there was nothing to do about the results), with TDM1 approved my doc wanted to see what was going on inside me.

I've had at least 3 pets a year, for the past 7 years, so I am no stranger to the protocol - which I follow.

Meanwhile, my onc called with the report and said that my entire muscular area was "hot" including my heart, all my muscles and they were not able to read the report or use it at all. (I did not exercise the days before, or get a message, and my blood sugar was w/in normal range before the FDG shot).

I have been suffering extreme neck pain, and had one epidural (no sedation) 4 days before the petscan. The nurse also gave me a shot of toradol (anti-inflam.) about 10 minutes before I was scanned. During the hour before I was scanned, I was napping in the holding room. I am so speechless at this result - have never heard of a PET not working!

The only thing I can think of that would have used all my muscles - I had quite the sob fest the night before the scan - neck pain was terrible, feeling quite overwhelmed, and sometimes sad just overtakes.

But still, many people cry, many people - especially with cancer - have pain, so would that have made my muscles uptake all the sauce? Anyhow, just wondered if anyone here has ever had a similar experience?

Not sure now when to repeat the PETscan. Getting another epidural on Monday - hopefully this one will give me back my "life" so I can deal with my "Health"?!

I would appreciate any input...

[Jackie07]

Well, Flori, what can we say? You are just too 'hot'! :)

[Will do some digging and post it if I find anything ...]
[Are they sure toradol is not the culprit?]

Perhaps you have the 'hypersensitivity reaction' to the drug ...

http://en.wikipedia.org/wiki/Ketorolac

[michka]

Flori, I never heard of that but the Pet/Scan Dr must know so he should explain. It must be frustrating to go through the Pet procedure and wait for the results (and we know what stress it is) and have nothing. You need another Pet but you have to understand what happened before. I hope somebody on the forum can help. Hugs. Michka

['lizbeth]

I have heard that the scan does not distinguish between cancer and inflammation.

What was this weird allergy with Herceptin that you had before?

Something is up, maybe a reaction to the solvents that the treatments are delivered in?

Breathe. Drink plenty of pure water. Check Dr. Google for natural anti inflammatories such as Tumeric. Do you like curried foods?

Plenty of fresh fruits, veggies and whole grains. Are you taking anything like Chlorella to help detox?


I see only the Perjeta seems new since the last PET. Or it might have been a reaction to the Toradol. Even if it is an anti-imflammatory if you have a sensitivity to something in it . . . and you seem to be very sensitive to processing things.

[BonnieR]

As I read your message, it sounds as though you had a " sadness scan". I have no useful ideas. Just that reaction
Keep the faith

[StephN]

Wow, Flori! I think you are beginning to qualify as the Murphy's Law of cancer patients. The longer we live the more "oddball" things can occur. Shoot ...

Wish I had an answer, but press on with your radiology team.

I know that when I have taken a book to read while I wait, it was been verboten. Can't even use the arms to hold a light book or magazine - it is the weight of the arms and hands that will engage the muscles they said. That is the reason the light gets turned down, so we are NOT tempted to read. Cell phone must be turned off as well. "Do NOT move" - and I am sure you did not, so there is someting else at work.

[ElaineM]

Wow !! Did they change the formula for the pet/ct injection? Do you have alot of inflammation in the area that lit up? Alot of inflammation can increase uptake of the contrast?
I think I would get the pain/inflammation under control and try the pet/ct scan again at some not too distant time.
Good luck figuring this out.

[NEDenise]

Flori,
That sucks! Geez!

And I'm so sorry to hear about the neck pain and injections. I've had to deal with neck and back pain...plus those stupid injections...on and off for years. And, really, unless you've lived that kind of pain, it can't be understood. Your tears are TOTALLY justified! So much to cope with all at once. My heart goes out to you!

Sending you strength and a gentle hug for healing...and a satisfactory answer on the whole PET SNAFU!
Try to relax...easier said than done, I know...but your neck needs all the destressing you can manage.
Denise

[Lien]

I am no doctor, so this is just my thoughts from a laypersons point of view.

Doesn't a PET scan light up areas where the sugar uptake is more intense? Muscles take up more sugar when they are "working". So could the neckpain be causing all your muscles to cramp? Which would account for the increased uptake? A muscle relaxant could make a difference then.

Probably not, as nobody at the hospital thought of that, but thought I should mention it anyway. Who knows?

Hope the fact that only muscles lit up indicates that no other areas are active right now.

Hugs

Jacqueline

[NEDenise]

Hey Girl!
So what's the latest on the repeat PET scan? Has your neck pain resolved?
Inquiring minds wanna know!

:) Denise