Ibrance and PET scans

[Greatday2]

For those of you taking Ibrance 3+ years, how often do you get PET scans?

[Merma]

Every 6 months, I get a PET/CT scan without contrast. I've been on Ibrance for 6 years for endometrial cancer. All recurrences were ONLY found on scans.

[Aprilfoolz1]

I've been on Ibrance and Fulvestrant for 4 years . I get pet/ct scans every 4 months .

[SoulJourney]

Hi!

I only had one PET scan in my 3 1/2 years. Had CT with contrast every 6 months .

I was bone only while on Ibrance.

Good luck

Tammie

[Dflur]

twice a year, with no progression. I’ve been on ibrance and anastrozole since September 2019

[wendle3007]

I'm just over 2 years on Ibrance. I've never had a PET scan. I have a CT scan done roughly every 3 or 4 months depending on how the dates fall. I usually see my oncologist around 3-4 weeks after each scan. I've also requested annual MRI scans as the mets are in my spine and the MRI is the only scan which shows them clearly enough

[TE53_67 in reply to wendle3007]

ditto been on Ibrance since August 18 and only have CT every 3/4 months. Only PET at the beginning.

[JKMS]

I still have a PET scan every three months and have been NEAD for over two years.

[Red1246]

I’ve been on Ibrance since September 2019. Have CT scans every 3-4 months; most recently without dye given chronic kidney disease diagnosis..

[Greatday2 in reply to Red1246]

Have you ever stopped taking the ibrance since you started in 2019?

[Red1246 in reply to Greatday2]

Yes I’ve stopped a couple of times. Both at the beginning of Covid in order to have vaccines. Remained stable in CT scans thereafter.

[bikebabe]

two and half years -never had-PET scan but do have quarterly Ct with contrast and MRI no contrast. For spinal mets lobular cancer.

[Gardengirl345 in reply to bikebabe]

I also am lobular. So tricky to monitor. I have FES PET with CT. Trying to decide about if contrast is needed. The FES monitors estrogen since my bone lesions didn't show on FDG. But I still have lots of questions. Doing an MRI in January. What does your doctor say about lobular?

[SwedishSissi]

I only do CT scans. Normally every 3 months, but sometimes they shift between 2-4 months depending on my travels. I've been on Ibrance for just over 1 year.

[Phillipians4and6]

hi,

December 13th will make 4 years on Ibrance. I get ct scans with and without Iv contrast of my chest, abdomen and pelvic every 6 months. I haven’t had a pet scan since the first year. I would get them every three months. My oncologist retired and I got a new one. Insurance stopped the pets scans after the third one, but my oncologist said she only asked for Pet scans if she felt they were needed. So it’s been ct scans since. I hope this helps.

[Greatday2 in reply to Phillipians4and6]

Have you been on the 21 day cycle from the start? Have you ever stopped taking ibrance since you started 4 years ago?

[Phillipians4and6 in reply to Greatday2]

Hi. Yes I’ve always been on the 21day cycle. And I stopped when I had Covid. Which was twice and when I had an upper respiratory infection.

[love2golfwell]

I have been getting the PET/CT scans every 6 months now for awhile. I have been on Ibrance just a little over 3 years. So far, so good.

[CaveCreekAZ]

good morning! I’ve been on Ibrance and Letrozole for 2 years 9 months and I get a PET scan every 90 days. My MBC is staying put in a couple of ribs and my sternum, scans give me peace of mind. Have a wonderful holiday and a healthy new year

[Gingerann1]

Hi! I’ve been on Ibrance and Fulvestrant as 1st line treatment since being diagnosed a little over three years with Pleural Effusion on left lung. Got to NED (no evidence of disease) after 15 months so requested to move scans from every 3 months to every 6 months as long as there is no evidence of any progression. Next scans are in Feb. I get CT w/w/o contrast of chest, abdomen, pelvis and a whole body bone scan. Never had a PET scan.

[mariootsi]

I have ct scans and bone scans every 3 mths.

[Rotagirl]

I have CT scans every 3 months. I have never had a PET scan. I have been on palbo/ibrance and letrozole for 5 years 4 months. My C is lobular. Fay

[Greatday2 in reply to Rotagirl]

Good to hear! Have you ever stopped taking the ibrance since you’ve been on it?

[Rotagirl in reply to Greatday2]

No, 3was on 1 off. Neutrophils stagger up to 1.0 each time.

[myrtice]

I’ve never had a pet scan. I’ve been on letrozole and Ibrance for 41/2 years. I have ct scans with contrast every 3 months. I had a double mastectomy and bone Mets on my spine. No progression so far. I also take an xgeva shot quarterly for my bones. Praying for you all a healthy and blessed new year.

[Greatday2 in reply to myrtice]

That is great to hear. Have you ever stopped taking the ibrance since you started on it 4 1/2 years ago?

[chemohawk]

I've been on Ibrance and Faslodex (fulvestrant) injections for a little over 7 years now. I used to have CT scans with contrast but contrast started causing an immediate upset stomach (diarrhea), so now I get a Pet/CT without contrast every 3-4 months. I also have bone mets, so they routinely test from my neck to mid-thigh.

[RockGarden in reply to chemohawk]

I have been on Ibrance and letrozole for 7 1/2 years. I see my oncologist and have CBC and diff and CMP, magnesium, phosphorous and Ca15.3 every 3 months, with a NM PET/CT eye to thigh every 6 months. I have mets in my spine. After reading another post, I realize that I don't know when I was NED. Will definitely check that out.

I just recently joined this group and this is my first post. Thank you all for your contributions. They are very hepful.

[chemohawk in reply to RockGarden]

does the letrozole make your bones ache? Faslodex really makes my bones hurt.

[RockGarden in reply to chemohawk]

My original scans in April of 2016 showed mets to my thoracic spine. By September, 2016 my scan read "No new suspicious foci of FDG uptake." My August, 2017 report, "No abnormal FDG uptake." Although different wording since then, so far results are the same. I have my next NM PET/CT in March.

[RockGarden in reply to chemohawk]

As far as I know, the letrozole doesn't make my bones hurt. Of course, I just turned 80, so am not ready to run any races when I first get up. But I belong to a walking group and just became a Master Gardener this year, so I think activity helps to keep things loosened up.

[Greatday2 in reply to RockGarden]

What dose of Ibrance are you taking? Just wondering if it gets decreased over time?

[RockGarden in reply to Greatday2]

When I first started taking Ibrance, I was put on what I believe is the maximum dosage, 125 mg. After having to hold off on taking it for weeks at a time to see if my counts would recover, my doctor reduced it to 100 mg. The result was slightly better, but we eventually agreed to reduce to 75 mg, and I have been on that dosage ever since.

[Eliactida1955]

from the beginning with ibrance and other meds too pet scans every 5-6 months.

[morty87]

I get CT and Bone Scans with contrast every 6 months. I have been on Ibrance and Letrozole since January 2018 with excellent results.

[13plus]

I was on iBrance previously. I think the timing of scans depends on a number of factors.

Do you have a history of your TM going up with progression? Then your bloodwork might show a reason to look at what’s going on sooner vs later since previous scans, if there is a noticeable pattern of change.

How do you feel? If you start getting new or worsening bone pain (if you have bone mets) then that would be another good reason to move scans up sooner. Otherwise I think anywhere from 3-6 months is standard timing between scans

[hurricaneheather]

mets to right pleura and lung with pleural effusion, July 2015. started treatment Aug 2015. have been stable, NEAD since (March) 2016. still on first line of treatment. PET/CT scan once a year.

[Greatday2 in reply to hurricaneheather]

Thanks for replying. Are you still on the highest dose of Ibrance (125) or did that decrease?

[hurricaneheather in reply to Greatday2]

i've been on the lowest does since end of 2015 or beginning of 2016?