Scanxiety/ibrance: Hi everyone, I have... - SHARE Metastatic ...

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Scanxiety/ibrance

Ppppopp
Ppppopp

Hi everyone,

I have a scan tomorrow and I’m terrified. I have been on ibrance/letrozole for a year now. My first scan was excellent and my second scan was even better than they could have expected! My oncologist said if it stays like this I’ll live to 108!! Haha.

So afraid it’s not going to be the same(no reason) massive scanaxiety. I have 1 spot in my lymph nodes on the opposite side and a very time bone met!!

Does everyone feel this way? Anyone been on ibrance for a while? I’ve read about 20 months average?

84 Replies
oldestnewest

Hi, I get scan anxiety all the time. I get scanned every three months. Congratulations on the past two results. Will be thinking of you and wishing for another excellent scan! Keep us posted. Best of luck!!

Ppppopp
Ppppopp
in reply to LeeannW710

Thank you so much !x

I've been on Ibrance and Faslodex for for 30 months and continue to receive good scans. Wishing you much luck..

Ppppopp
Ppppopp
in reply to Betbop

So good to hear! Thank you so much.

It’s a real thing and no matter how often I tell myself it will be ok I still get scared

Ppppopp
Ppppopp
in reply to Sarcie

Totally!!

I have been on Ibrance/letrozole 33 months with all great scans. Next week I will have bone and ct scans again. Praying for good results again but I really don’t stress about it. We make it a mini vacation in Houston and go out to dinner and visit dear friends. You sound like your Mets are small and stable. You should be fine for a long time. Enjoy living and pray for a cure.

Ppppopp
Ppppopp
in reply to Susan1953

Thank you so much Susan, reading this just before my scan and it has made me feel so much better !

Hope yours go well too next week Susan ! 33 months is great news!

My next one is April , which will be 7 months since my last ct scan ( just had my annual mammogram on my non -bc side and awaiting results) . x

I have been on ibrance and stable on it for just over 2 years . I’m sure you will be fine tomorrow , but we all get some degree of scanxiety , especially close to the appointment ! Good luck 🤗 x

Thank you so, so much! Good luck with your results.xxx

I can relate!! I have my mammogram and a CT scan scheduled for the 27th. Then middle of February a bone density check. I feel good but like everyone else every twitch or sore spot you wonder is that more cancer. I know it's easier said than done but stay positive worrying isn't going to change anything!!!

Ppppopp
Ppppopp
in reply to Justme153

So true. Every twitch every ache it’s spread!! Thank you so much.xx

mariootsi
mariootsi
in reply to Ppppopp

I know!

I get it to and have been on Ibrance since April 2016- in fact I have scan coming up in a couple months - I do every six months . I hope yours goes well.

Ppppopp
Ppppopp
in reply to illini9

Oh wow! Thanks so much for your message. Do you mind me asking if your first 2 started off well?

illini9
illini9
in reply to Ppppopp

Yes all my scans have showed improvement or stability

Ppppopp
Ppppopp
in reply to illini9

Thanks! Great, my previous 2 were really excellent. Just praying it’s still the sane.

Are you following any health programs that would contribute to your longevity?

I take metformin and cvs oil

Hey I’ve my 3 rd scan in Feb I’m nervous to hell too , I’ve been on the same Ibrance n letrazole for 16 months and feel fab. Bone scan was clear too. I’m hoping to last years n years on these or others out there. I’ll fight fight fight

Much love 💓 jo

Me too! I’m hoping if you get off to

A good start you stay that way.

Very best to you.xx

I know that feeling. Since I have changed to private care, I get a total body MRI and CT scan every nine weeks. This is great in one way but it seems so little time until the next one comes round again. I have both on Friday. It should have been next Tuesday and results from oncologist on Wednesday. Unfortunately the machines are getting serviced next week so scans brought forward. Should not complain as at least the oncologist is getting an up to date picture very often.

It’s tough isn’t it? All the best for future scans.x

Good luck! I pray for good results for you!

Just went through this with scans this week. The scanaxiety is terrible! I'm one year into treatment also with Ibrance. I'm finding that just going with it is somewhat helpful. Know you will be nervous and maybe plan a treat for after. My treat is a browse through a craft store on the way home. We have all been there!

Ppppopp
Ppppopp
in reply to NShaft

Good idea! Thanks you

Ppppopp
Ppppopp
in reply to NShaft

How were your scans?

NShaft
NShaft
in reply to Ppppopp

All stable. I know that's a good thing. There is always that tiny bit of disappointment that it isn't just all gone.

Ppppopp
Ppppopp
in reply to NShaft

I’d be so happy with all stable! Almost impossible (I’ve heard) to get to be Ned.?

NShaft
NShaft
in reply to Ppppopp

Some do get to NED but stable is the best to hope for. How was your scan? Have you had results yet?

Ppppopp
Ppppopp
in reply to NShaft

Wow! Had it yesterday now is the waiting game. Tomorrow afternoon. I get the results. My stomach is already in knots.

mariootsi
mariootsi
in reply to Ppppopp

I hear you!

girlsptz
girlsptz
in reply to Ppppopp

Wishing you stable results with your scan results.....it's always a mind game isn't it? Will be thinking of you tomorrow and please share when you can. Take care.

Sandra

Ppppopp
Ppppopp
in reply to girlsptz

Will do! Thank you.

Hi,

I would be surprised if you said that you did not have any anxiety. Many of us feel anxious around that time. Please try to stay positive! Mine is on 14th February.

Sophie ❤

Ppppopp
Ppppopp
in reply to SophSP

Thanks so much. Good luck to you too.x

SophSP
SophSP
in reply to Ppppopp

Thank you! x

oilermama
oilermama
in reply to SophSP

that's quite a Valentine's Day present. May it come out with no changes. That would be a true love gift.

SophSP
SophSP
in reply to oilermama

Thank you. I am hoping I get stable results too.

Sophie

Hi Ppppopp,

We are get anxiety with each scan. I have just started my 35th month of Ibrance. I worry every quarter when scan time comes around. Good luck with your scan. Blessings Hannah

Ppppopp
Ppppopp
in reply to hdhonda

Thanks so much Hannah.x

Scanxiety is an ongoing struggle for me too. I am working on lowering the stress.... To no avail.

It's about the fear of the unknown, I think....which in our case is totally understandable.

I will be praying for good results for you.and I will be thinking of you! We are here for you!

Sending hugs and love

Marianne

Ppppopp
Ppppopp
in reply to mariootsi

Thanks you so so much! Really helps.x

Hello, Poppy!

As you are likely to hear, EVERYONE suffers from MBC scanxiety. I’m sure it never disappears no matter how long you’ve been treated.

I was diagnosed with MBC in November 2017, now 2 years, 2 months on the Ibrance/Letrozole combo, following initial radiation treatments.

Yesterday I had my first onc appointment in six months, along with blood draw. Onc said all looked well and she’s recommending I proceed with blood draw every 3 months with annual pet scan. This comes with reminder that if any pain or unusual health issue arises, to contact them right away.

My spread was much more extensive than yours, including solid lump in armpit and several mets to spine and pelvic bone. Knowing that, as of today, MBC is incurable, just keep remembering that the scan is the most important method of detecting progression. And alternative treatments are out there fortunately.

God bless you, Poppy. Being anxious is totally normal. Just imagine all of our arms wrapped around you in a warm embrace!!

Linda❤️❤️🙏🏻🙏🏻

Ppppopp
Ppppopp
in reply to SeattleMom

that Is so sweet! Thank you so much I really appreciate you writing to me.xx

Ppppopp
Ppppopp
in reply to SeattleMom

Ps. I was just in Seattle.

SeattleMom
SeattleMom
in reply to Ppppopp

Incredibly rainy this year! Ugh!! But spring, summer, and fall are WONDERFUL!!

❤️❤️

Ppppopp
Ppppopp
in reply to SeattleMom

Yes! I’ve been both. I have a house in Vancouver, so often fly into Seattle.

SeattleMom
SeattleMom
in reply to Ppppopp

Any sightings of the Duke, the Duchess, or Archie? :)

Ppppopp
Ppppopp
in reply to SeattleMom

Yes actually! But only in their cars( with tinted windows and bodyguards) there is is so close to ours-so weird!

my mets are to pelvis and all of my spine... Spine looks like Swiss cheese, but I keep going. Have blood draws every month even though one oncologist says she doesn't think they mean anything. Scans every six months.

Ppppopp
Ppppopp
in reply to oilermama

Mine is the same with bloods. Have to keep going. Everyday is truly a gift. I know that now.x

I was on 18 months. It worked great, but I couldn’t tolerate the drug any longer.

It’s normal to be worried prior to a scan. I’ve been doing this for 7 years, and that never changes. Remind yourself that even if something does show up, there’s always another treatment waiting for you. Ibrance wasn’t in existence when I started this roller coaster ride, and maybe my next drug is being released today. Sending hugs and positive energy.

Ppppopp
Ppppopp
in reply to Kathyquilts

You are so right! Thank you so much for taking the time to write to me.xx

You're totally normal. I've been going at this for just over 6 years now, 3x per year and get terrified for each and every one.

Ppppopp
Ppppopp
in reply to diamags

Torture isn’t it! 6 years and going is great though!

diamags
diamags
in reply to Ppppopp

Yes it is, but I honestly feel blessed.

Ppppopp
Ppppopp
in reply to diamags

Amazing!!

girlsptz
girlsptz
in reply to diamags

Another inspiring post. Wonderful for you and may it continue for a long time in the future. Thanks for sharing. Take care.

Sandra

54 months of treatment... started Ibrance and Letrozole in August 2015; switched to Anastrozole at year end. first follow up scan in Nov 2015 indicated tumors were shrinking.NEAD with March 2016 scan. stable and NEAD with each scan, thereafter. as of last scan in 2019, on the 8 month scan plan; onc will adjust if bloodwork or i indicate concerns.even with "excellent" (per onc) bloodwork and "normal range" tumor markers, still experience scanxiety. for me, each scan is a new experience, thus the scanxiety.

girlsptz
girlsptz
in reply to hctrojan

Wow you are doing amazing! Hearing longevity stories is so inspiring. Thank you so much for sharing and I agree with everyone scan times are always anxiety provoking no matter what...it's the nature of the beast and our minds I guess. May your stability continue for a very long time.

Sandra

Ppppopp
Ppppopp
in reply to girlsptz

They really are! Thank you so much for taking the time to write. .xx

oilermama
oilermama
in reply to hctrojan

sign me up as a member of your fan club!! I too am on Ibrance and anastrazole. The side effects from the anastrazole are the only struggles I have.

Yes! I’m scared things will get changed up.

I too get worried before I get my scan results. The scan I am going to have next week is particularly adding worry as my tumor markers have been above normal for the past two months. I am waiting on the results form my latest blood test.

Worrying will not change the results. I wish I could focus on the positive things like the fact that I feel good, have energy and can do most everything physically I want.

I have been on Ibrance and Letrozole for 18 months.

It’s so worrying! Do you mind me asking how much disease you started with? Thanks for taking the time.

In April 2018, I had mets in my spine, right hip and a 2cm dot in my right lung. Since starting Ibrance and Letrozole I have no progression of the cancer . The 2cm dot had disappeared on my lung.

I got the results on my January tumor marker today. It has dropped to 45.

My understanding is that the average efficacy is now around. 34 months. I’ve been on IBrance for 45 months. And there is another effective drug as a back up and more in the pipeline. It’s hard not to be terrified, but since that’s a tough emotion that probably isn’t conducive to good health, I hope you can find someone or something to help you through it.

At 45 months, I definitely get worried between scans. But I’m a long term survivor (first diagnosis in ‘94), so I tell myself I’ll continue to help stretch the average ....and see my first grandchild born in May, and hopefully the second — my son gets married this summer. Remember, the drug has only been on the market for 5 years. They really don’t know the full effects yet.

Sending peaceful, hopeful thoughts your way.

Thank you so much. People like you give me so much hope.

You will see you grandson’s!xx

I've been on Ibrance and anastrazole for 18 months and have scans every six months. My anxiety comes after the scans - waiting for the results. Hope they went well -- the Paloma study showed that Ibrance improved longevity from 14.8 months to 24.8 months but many people seem to have gone longer than that. Other folks???

A lot of us feel this way! I have been on Ibrance letrazole with good numbers for 15 months and I still stress about scans. Thankfully the most recent one two weeks ago was good. Sorry this stresses us out. It’s natural to fret.

Thank you,. It’s terrible. Glad your results were good!

19 months on same drugs for me too Ppppopp. I have Mets to spine, skull, multiple bilateral ribs and sacroiliac. I also have some “spots” on lungs and liver.

So I feel that every day that I don’t get bad news is a good day.

My next scans are on 4th February.

This is a wonderful string of posts for anyone wanting to see how well we are all doing. Loving what you started here. Thank you.

Go well with your anxiety and your scan results.

Love and hugs from Australia.

Ppppopp
Ppppopp
in reply to Timtam56

Thank you so much for your message. I will pray that you continue with great results!xx

I get horrible scan anxiety, I have been on Ibrance/Letrozole for going on 3 years in May and all my scans have been great , I had 1 bone met . Yet every time leading up to the next one it's horrible, I'm trying not to worry until I have something to worry about! We'll see how that goes!

That’s fantastic! Good advice. So good to hear you have had 3 years so far!! Amazing!

I recognise this very well, today I got the answer from my last scan, NED again, started Ibrance April this year. I am so thankful this medicine exist🥰

Your not alone. My scans are Monday and I find that I always expect the worst.. So far I have been on the Ibrance for a year and been blessed with good results and what I consider manageable side effects. I keep thinking it wont always be this way. Best wishes for continued response to the Ibrance for you. :)

Ppppopp
Ppppopp
in reply to AmosF

Thank you, messes with your head. Good luck! I will pray for you. Let me know how you get on. I’m sure it will still be good.x

4.5 years here. Sounds like you our oligo metastatic with bone only disease with a wonderful prognosis. God bless!

Ppppopp
Ppppopp
in reply to Lordmandy

That’s fantastic! So good to hear. Fingers crossed with my prognosis!

Thank you!xx

Ppppopp
Ppppopp
in reply to Lordmandy

Fingers crossed for your prognosis too!

I had 4mm in my bone, that’s now gone with Ibrance.

Have you been on Ibrance all that time? Is yours just in the bone too?

Xx

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