mixed results??

[DianaSav]

hi friends! I habe a question… has anijt here had “mixed” results on bone Mets??? I have some areas on my pet scan that got better and then there were some that lit up more!!! My Dr wants to switch the meds! I went for a 2 opinion and well she thinks I should stick it out on the current meds ( Verzenio) for another 3 months and see what happens on the next scan….. I had the 2 opinion re read my petscan and they said mixed results as well even tho their interpretation was a little different l…. Please anyone have a similar experience ?

I am we postive and her 2 low! I have bones Mets only kinda scattered thru my spin….. thanks so much!!!!

[GollyG]

Hi there, I'd be reluctant to change a treatment due to mixed results from the scan alone. Are tumour markers going up? Are you feeling ok? It would be good to see if there's a pattern of indications suggesting progression before all the upheaval of something new. Good luck, Gill

[DianaSav in reply to GollyG]

scans are showing healing bone and some spots that were there are lighting up a tiny bit! The markers are stable they go down then tiny but up then go down again one time the didn’t move at all

[NShaft]

when that happened to me I had radiation on the spots that were more active and stayed on the same treatment.

[Kerryd22]

That’s my experience every time I have a scan. The Mets don’t increase or not noticeably but one time the left hip lit up and the next time it was silent but the right hip wasn’t and lit up like a Christmas tree. It’s called stable by the radiologist and I’ve not had a change of medication since 2016 although I did drop Afinitor in April 2017 and went on with Exemestane alone.

From my own experience, I’d say you should stay the course and see if there’s actual progression before dropping out of this line of treatment. I’m not a doctor though and I’m not you either so naturally, the choice is yours!

All the best!

Kerry

[DianaSav]

thank u so much for your opinion! I was struggling with this! Also with thinking of I should change my original dr! I’ve been with her for 7 years but there are time and a few instances she was not the most “ communicative” and well I feel like since she took me off Tamoxifin and a year lter the cancer came back in bones! My scans say mixed results and my markers have stayed the same ( they are high but not bad and not moving really)

[ANNIE6449]

I am seeing an orthopedic oncologist bc I have only one met and it is in my scapula (shoulder blade). After changing drugs my pain almost immediately went down dramatically and my shoulder mobility increased. Yet my PET scan showed MORE lytic activity. My orthopedic oncologist explained to me that BONE metastases are very different than metastases to other body parts bc HEALING bone shows up as metabolically active the same as cancer does. You cannot tell from a PET scan if the cancer is more active/spreading or if the bone is actually healing. He explained that it takes weeks or months for a PET scan to “catch up” to what is really happening. He told me that my clinical progress is so much more important as a measure of how well the new drugs are working, and clearly they are working for me based on my dramatic clinical improvement. Even my breast oncologist did not know that and was confused by the PET results!!

[DianaSav in reply to ANNIE6449]

thank u so much for this! I’m struggling with what to do next and thank u for the input! I know bone Mets are tricky! I am feeling so much better and honestly when I read them myself I almost thought it was someone else’s scan cuz honestly I wasn’t sure how it could be possible some of the areas are lighting up more! What medication are you on

[DianaSav in reply to ANNIE6449]

what drugs were you in first and why the change?

[Gardengirl345 in reply to ANNIE6449]

so curious as I, recently, had a scan which mostly showed stability or even decrease in bones, except for one spot where the SUV uptake showed a slight increase. My dr isn’t too worried, but no one has mentioned that could be “healing” activity. Most of my spots are, however, sclerotic. And those which aren’t, seem to be low activity. We measure using the FES PET as it measures estrogen and is helpful with sneaky lobular cancer. Thx!

[DianaSav in reply to Gardengirl345]

pretty much this is what is happening to me! I habe IDC with lobular features they are saying! Ugh

[Gardengirl345 in reply to DianaSav]

let’s stay in touch. I’d love to know how our different drs will be addressing our similar situation. Best to you!

[ANNIE6449]

I was on Ibrance and letrozole for just about 2years with no new activity. When I started feeling pain in my scapula we were suspicious as it was exactly the spot where the met had been before, though it had never caused any pain at all. The new activity was confirmed with a PET, MRI and CT. I had a new oncologist so I was a bit leary about changing, but she was spot on! I started Fulvestrant injections and within 2 weeks the pain was down 50%. After the first month it was down 80%! Then I started on Kisqali. I’ve continued to heal clinically and this is my 5th month on both.

My bfs daughter is an orthopedic surgery resident who had been at UCLA and highly recommended an orthopedic oncologist there. He’s marvelous!! And he’s a GREAT resource for bone mets when my breast cancer oncologist is unsure about something related to the bone met.

So far that’s been my only met (first bc diagnosis 2018, first metastasis 2020)…..hopefully it will be my only forever 🤞

[DianaSav in reply to ANNIE6449]

so ur on Faslodex and ibrance? What is your cancer? He postive and her 2 low here

[ANNIE6449]

I also have lobular and my bc oncologist said we should consider an FES PET in the future. I’ll have to be off the Fulvestrant for a month before doing it and right now it seems to be kicking my Mets butt so we do not want to change anything! 👍

[Gardengirl345 in reply to ANNIE6449]

I’ve had three FES PET scans so far and they seem to be a good/sound measurement for ER+ lobular cancer. I am bone only Mets. Grateful for this new technology as I begin this road. Im oniy 16 mos into MBC DX. I was barely stage 1 in 2011. Had a less than 1% chance of recurrence. Healthy lifestyle, low onco score, double mastectomy, 10 yrs tamoxifen… crazy. No one saw this coming, but here I am. Grateful there are more treatments and more hope for us in 2023.

[DianaSav in reply to Gardengirl345]

u sound exactly like me except I’m idc not lobular

[DianaSav in reply to Gardengirl345]

what treatment are you on now?

[Gardengirl345 in reply to DianaSav]

started last Feb 2022 on letrozole/ibrance/zometa. Mostly stable except for this weird uptake on one spot in ilium. Otherwise doing well and attempting to live normal life. 54 yrs old. 5 (mostly) grown kids… grand baby on the way. I refuse to let this cancer steal the joy of life .

[DianaSav in reply to Gardengirl345]

I’m right there with u! I’m 47 and struggle is real but I refuse to think anything but I will get this stable and live a long healthy life! Time to time it’s hard but in general I think I handle it well! I know they have so many different treatment options and more to come! Let’s keep in touch! I go for a scan in 6 weeks to see if anything has changed and will take it from there! I’m guessing at that point I will have to make a big decision as to which dr to continue care with! I’m so nervous being I’ve been with my dr for the 8 years but there is a lack of communication and issues in my opinion with the way things are run in the office! She’s very proactive tho and never ever denies me any acan or and thing I want! Idk it’s hard all around I feel like cuz the decision I make could be wrong? Idk lol

[ANNIE6449]

Kisqali. The Ibrance is what stopped working.

Lobular, ER+

[DianaSav in reply to ANNIE6449]

I’m on Verzenio and Faslodex and xgeva! We positive her 2 negative! Just diagnosed Mets 8/22 original cancer 2015 5 years Tamoxifin and clear for 7 year til now