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Pet Scan on May 21


Claudia

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Hi Fellow Warriors,

I'm scheduled for a pet scan on May 21. This is my first scan after 4 rounds of chemo and Keytruda so far. I am trying to stay calm and hoping for the best. I can't help but worry that the treatment didn't work or didn't work well enough so that I can be over with the chemo. My oncologist (who I love) seems very optimistic but I can't help but think that he probably like that with all of his patients. I mean, they want me to stay positive so what else is he going to say? I'm doing my best to keep good thoughts going but I can't help but think "what if?". 

Claudia

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Scanziety is one of the worst parts.  Try to find some distractions.  No point playing the what if game until you know more (still trying to practice what I preach).  I find this forum a helpful distraction.   I know some people plan something special as a distraction for the time between the scan and when the results come back.

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Hi Claudia, 

I'm beginning to feel like a scan pro at this point,  Since September, I've had 7 CT Chest, 2 Brain MRIs, 1 PET.  Scanziety is the worst, so Curt's advice is perfect.  I load up on spa appointments; pedicures, messages, acupuncture and whatever else is going on (like soccer games).  I'm a big fan of Netflix comedies, so you may want to check out Death in Paradise.  Nice distraction material. 

I think I understand how my center operates so I go by the two day rule. If after the scan I don't receive a phone call within two days, I assume it's steady state.  Since my center is a major academic center, the residents and fellows get the first read.  If there was ever an issue I usually get a phone call the same day.  

Keep us posted and we'll be there for you! 

Michelle 

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Claudia,

Waiting is the worst! I think that my mom (the cancer warrior) deals with it better than me!  As I've seen with my mom, chemo + Keytruda can do wonderful things!  It's not an easy road by no means, but it's a road that comes to a NED ending for many, including my mom.  I like Curt's suggestion in trying to find some distractions.  You have no control of what the scan results will say and no matter whether they are positive or not-so-positive, your docs will have a plan of action for you.  

Take care,

Steff

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  • 4 weeks later...

Hi Everyone,

Got great news about my pet scan.....at least I think its great. I had a 2.7 CM mass in my left lung which has shrunk down to 1.3 CM that they are now calling a nodule. My left groin lymph nodes are clear which they were not before. My oncologist took me off chemo and is continuing Keytruda for a year. He said my cancer is 85% gone and the activity level went from 15 to 1. That sounds good right? BTW can anyone tell me what SUV means? I looked it up but still don't understand. Yippee!!!!!! I think. LOL

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That is great news, Claudia! Congrats!

My mom proceeded with Keytruda alone after 6 infusions of carbo+alimta+Keytruda and tolerated it much better.  Infusions were much shorter and the more mild side effects didn't disrupt daily life too much.

Great work!

Steff

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That sound like great news Claudia.  SUV = Sports Utility Vehicle.  🚙.  I’m kidding.  That stands for Standard Uptake Value.  Cancer cells LOVE glucose.  When you get a PET scan they inject you with glucose.  The scan is measuring the amount of glucose the cells are absorbing.  Cancer cells absorb “uptake” more than other cells.  That causes them to be more active and glow on the scan.  Having a lower SUV is good.  When your doctor said the cells were less active that may be part of what he was referring to.

Definitely yippee!!!

 

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Thank you all for you happy positive words. I also want to thank Curt and Tom for answering my question with totally understandable explanations. Sometimes I don't get some of the medical wordsy answers. Do you think there is any difference between calling it a "mass" and a "nodule"? Nodule doesn't sound as bad and makes me feel better. Thanks again.

Claudia

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