PET Results

[Garnet131]

Thanking God for my first follow-up PET results and also thanking everyone here for the encouragement and knowledge you've shared. I just started Cycle 10 of Ibrance/Letrozole and PET results show "No evidence for hypermetabolic lymphadenopathy above or below the diaphragm. The osseous lesions are no longer FDG avid." In other words, all of the many "hot spots" that showed up on my October PET are GONE! I asked my doctor if that meant I was NED (No Evidence of Disease) as I had read that here and after cautioning me about researching online, she said "yes" that's what it meant. I previously had spots on my spine, back, tailbone, hips/femur, chest, hilar nodes in lungs, shoulder blade, and a marble sized tumor in my neck/shoulder area that began shrinking around 3 months on meds and has been gone for months. I got these results on Tuesday, and it took me a while to process because I had a Zometa treatment that knocked me out for a day and also because my back "went out" about a week ago--haven't had back issues for over 30 years and now it's something else to deal with. Will be praying that others can achieve similar results. Guess I should add that one new spot surfaced that doctor found confusing--it was at the way-back base of my tongue. She checked it, saw nothing, and referred me to an ENT for follow up, but said it could be that I moved or something during the scan. Scan report also said that it was "probably physiologic" (which I looked up and means "normal"). Has anyone had something like that?

[nstonerocks]

I am thrilled for you! Now you can exhale and celebrate. So much angst around scans. So nice to have great news and relax for a while. 🙏

[Garnet131 in reply to nstonerocks]

Thank you!

[RLN-overcomer]

Yaaaaaaaaaaay Sister/Over-comer/Waaaaaaaaarior I know you are feeling like you have won the I have beat cancer million dollar lottery. NED is a great place to be. Dance, clap, shake, and shout it to the roof tops. To God be the glory. Praise shall be in my mouth, and yours Amen XoXoXoXoXo

[Tap321]

So very happy for you!!!!!

[Juneday]

I'm so happy for you. This is great news.

[Tam-56]

Wonderful news! This treatment plan is for you....thank you for sharing this great news ... it gives me hope!

[Garnet131 in reply to Tam-56]

We're all here to give encouragement and hope to each other!

I remember my first visits here and how much I needed the comfort and support that come from sharing our journeys.

[Snowcone16]

Fantastic news! Weird about the spot on tongue but based on everything else going away—probably not anything. Thanks for sharing with us.

[Hidden]

Great news - so pleased for you.

[Selmac]

Praise God. So happy for you.

[Lisa-n-AZ]

Congrats!!!!!

[SeattleMom]

Such great news to read on a Monday morning! I had similar experience on my first PET after November diagnosis and am on same protocol (Ibrance/Letrozole) plus a monthly shot of Xgeva. It really lifts your spirits, doesn't it?! I know it's not fun to know we will all be taking pills for the rest of our lives, but it sure beats the alternative! Congratulations on your super, super good news!! XO

[Rhwright12]

Awesome news! Celebrate! Prayers for continued good health! 😀💕

[blms]

Completely AWESOME!!! What dosage are you on?

[Garnet131 in reply to blms]

Thank you. I am on 125.

[Jerseygirl45]

So happy for you. I will have my pet scan this wed. Hope it is good. My shoulder started to hurt. Oncologist sent me for an X-ray and told me today there is nothing new. So we hope the pet scan shows nothing new.

[blms in reply to Jerseygirl45]

Yep Jerseygirl---We are all in the same situation and always assume cancer but fortunately, not everything is--just getting older!! I'm from NJ as well!!

[Garnet131 in reply to blms]

Oh, isn't that the truth!

[Garnet131 in reply to Jerseygirl45]

I'll be praying for good results on your PET.

[lashinator]

Such great news! Congrats!

If one scan is good, are you immediately considered NED? Not sure how that works, sorry for asking.

[Garnet131 in reply to lashinator]

I'm pretty new to this, so not entirely sure. But when I asked the doctor if it meant NED, she said "yes."

[Jerseygirl45 in reply to Garnet131]

Pet scan showed some progression. Bone onc said as long as it stays on bones it's ok. Will see my breast doctor next week, will see if she has a new plan.

[Garnet131 in reply to Jerseygirl45]

Sending hugs and prayers...

Did PET results relate to the shoulder pain you've been having?

[Jerseygirl45 in reply to Garnet131]

Yes, bone oncologist said there was an increase in lesions in that area. Does not recommend any more radiation. Just hoping meds will shrink them. He said see what breast doctors plan is.

[Garnet131 in reply to Jerseygirl45]

Have you had a lot of radiation? Why did you switch from Letrozole to Faslodex?

I had 5 very short radiation treatments to left femur right after diagnosis cuz ortho oncologist said it was in danger of breaking. Weird thing is that my hip pain was (and continues to be) on right side! When they took me to x-ray when I was hospitalized in October, I was shocked when they said left hip and told them it was the right that sometimes hurt. So they ended up doing both, but doc was always concerned about left. Not sure what did it, but in December and again in March, hip x-rays showed bones as "strong and solid." I suppose combo of radiation, Zometa, and exercise, along with Ibrance/Letrozole.

[Jerseygirl45 in reply to Garnet131]

I had 5 radiation treatments when first diagnosed in July 2016. They did my arm hips pelvis ribs. Felt much better. They put me on letrozole/ Ibrance. Did good markers went down. Lots of lesions shrunk. Then Sept 2018 markers went up every month. Jan doctor changed letrozole to Faslodex/ Ibrance. Marker continued up.so now she will see the petscan and talk to me next week. So we will see.

[amitgarg27]

Plz mention your age

[Garnet131 in reply to amitgarg27]

I am 71. (Original BC was at age 48.)

[amitgarg27 in reply to Garnet131]

Thanks