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PET result

Barbteeth profile image
49 Replies

Hi Ladies

Had result of pet scan of liver and there is still just the one tumour!!

I’m going to have SABR radiation so I’ll be able to stay on the same meds although I have to stop Ibrance whilst I have the treatment..it involves 5 fractions on alternate days and is done in Oxford (I’m in UK) so I’ll have to stay there for 10 days or so

Obviously I’ll have horrid side effects but will put up with that if it gets rid of the lesion

Have any of you ladies had this treatment?

I’ll also be cancelling my appointment at VOC until later

Barb xx

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Barbteeth profile image
Barbteeth
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49 Replies
Marieleb profile image
Marieleb

I was just logging on to check if you had put an update! So glad the results are good. Fabulous news!

Barbteeth profile image
Barbteeth in reply to Marieleb

Thank you..I just want it done now

Barb xx

Marieleb profile image
Marieleb in reply to Barbteeth

You get to enjoy beautiful Oxford for 10 days! 😉.Have they told you how quickly you will get the appointment?

Barbteeth profile image
Barbteeth in reply to Marieleb

Not yet but hope soon as I don’t want to look crap for Miranda’s wedding..I’m so vain!!

Barb xx

Marieleb profile image
Marieleb in reply to Barbteeth

Is Miranda your daughter? Weddings are the only time we get to do nice family and friends pictures nowadays...It is not being vain it is about making good memories and giving people a chance to keep some lovely pictures to remember... I hate having my picture taken but this half term I have made a conscious effort to pose for some pictures with the kids...I am conscious that those will stay and mean a lot to them when I am gone... There is also a lot to be said about dressing up and feeling like a million dollar and weddings give us the opportunity to do that without feeling to guilty.I am sure it will give you the motivation to keep going and you will look and feel great on the day...

Barbteeth profile image
Barbteeth in reply to Marieleb

Yes Miranda is my younger daughter..wedding isn’t till September..I’ve already got my dress and hat so that’s organised..not like me!!!

As you say I want to look presentable on the day for the memorable photos..anyway I’ll do my best to look glam!!

Barb xx

blms profile image
blms in reply to Barbteeth

You will gave a fabulous time and look amazing I’m sure! I just did this emotional journey fir my sons wedding, which I 100% put on in every way! My dress was designed by Ian Stuart of London, a personal friend.

Also my youngest son didn’t a semester at Oxford, Magdellan College! possibly only you Brits understand the importance of that college at the university- so much fun( well not fir him it was grueling! I visited him for a few days a couple of years ago and fell in love. I hope you can enjoy some if your time while there. Good luck with your treatments and keep mind as positive as possible to help the healing.

Barbteeth profile image
Barbteeth in reply to blms

Wow an Ian Stuart dress!!!... mines just a Karen Mullen off the peg but it’s gorgeous..a coral colour with a bow at the waist..you can see it on her website..bought a beautiful cream coloured hat with cream roses on the brim..can’t decide what colour accessories..might go for coral shoes and cream gloves and clutch bag!!!...a change from living in jodhpurs...I’m such a tomboy!!

Congratulations on your sons big achievement...Oxford is a wonderful place

All the best

Barb xx

blms profile image
blms in reply to Barbteeth

It was an amazing experience for him- really really toughnd much more than American University, to my surprise. He wishes to go back at some point, we will see. But it did prepare him for law school here in the states right out of undergrad. I am planning a trip to London then Italy again next May and will be taking my husband for his first trip there. I can't wait. The theater there is the best in the world, which also surprised me but astounding performances by the entire cast. We all look forward to our vacations, even if they are short. We all need things to keep us going!!

Barbteeth profile image
Barbteeth in reply to blms

We certainly do

Barb xx

blms profile image
blms in reply to blms

Ian is best friends with my best guy friend in Philadelphia. Ian designed his entire wedding three years ago. I will see if I can figure out how to post the photo for you. Ian is in the pic as he was the best man. He desgined each of the bridal parties dresses separartely according to our wishes, etc. It was quite the experience.

Barbteeth profile image
Barbteeth

Thanks for the link..just read it...doesn’t sound too horrendous

Barb xx

Teddielottie profile image
Teddielottie

Glad you’re able to go ahead with the radiation ... and we’re only at the start of June... so time to get ‘ wedding ready ‘ ! Keep busy with yoga and horses in the meantime and stay positive ! x

Barbteeth profile image
Barbteeth in reply to Teddielottie

Thank you so much...I’ll try and keep busy...it’s the best way to keep away the demons!!

Barb xx

MyMiracle13 profile image
MyMiracle13

Great news! Very happy for you😄

Julie2233 profile image
Julie2233

That’s great news! So pleased for you 😊💕

Red71 profile image
Red71

Great news!!! Just make sure you stay somewhere with a comfortable bed and chair while you are in Oxford!you don’t want to add the discomfort of a horrible mattress to whatever side effects you get!

Elaine

Barbteeth profile image
Barbteeth in reply to Red71

True...although you can’t do much about that when booking

I hate different mattresses as I have a water bed at home do anything else feels weird

Barb xx

Red71 profile image
Red71 in reply to Barbteeth

I have a very firm temperpedic mattress. Anything else feels saggy except for beds in really first class hotels and we don’t often stay in them when on vacation. We like condos if we are in one place for long. I get tired of eating all my meals out. Elaine

Barbteeth profile image
Barbteeth in reply to Red71

Me too

Don’t like hotels

Barb XX

Euebdbdbddh profile image
Euebdbdbddh

Hi , how long have u been on Ibrace ? And why radiation please ? Before Ibrace I had many tumours in my liver ,but very last scan showed only 2 , but my oncologist did not recommend radiation ... many thanks

Barbteeth profile image
Barbteeth in reply to Euebdbdbddh

Hi there

I’ve been on Ibrance for a year now...it is working on my bone mets but this liver tumour suddenly started to increase in size so obviously wasn’t responding to Ibrance

My oncologist is reluctant to change meds yet so that’s why the radiation to zap the liver tumour

Maybe you ought to ask about this treatment for you?

Barb XX

Euebdbdbddh profile image
Euebdbdbddh in reply to Barbteeth

Thank youXXX how often do you PET SCAN .. I am based in the UK as well xxx

Barbteeth profile image
Barbteeth in reply to Euebdbdbddh

Hi there

That’s the first time I’ve had a PET scan and that was because the CT scan showed the liver lesion growing..I have 3 monthly CT scans

Barb xx

Euebdbdbddh profile image
Euebdbdbddh in reply to Barbteeth

I have no scans just PET once a year .... xxx

Euebdbdbddh profile image
Euebdbdbddh in reply to Euebdbdbddh

R u based in London ?

Barbteeth profile image
Barbteeth in reply to Euebdbdbddh

I live in Nottingham...one of my daughters lives in London and actually works for the British Institute of Radiology

All the best to you

Barb xx

Mindysooty profile image
Mindysooty

Really pleased its good news for you Barb and that you're getting the treatment you need. Good luck with it all x

Barbteeth profile image
Barbteeth in reply to Mindysooty

Thank you

Barb xx

Wintervt profile image
Wintervt

Thinking of you, Barbara!

Sending ♥️

Barbteeth profile image
Barbteeth in reply to Wintervt

Thank you

Barb xx

Evaf profile image
Evaf

Great news! So glad you can continue on Ibrance. I hope the side effects of the radiation are manageable.

All the best xx

Tam-56 profile image
Tam-56

Great news! Sounds like you have a great team behind you! Good luck with SABR and quick recovery wishes. ❤️

mariootsi profile image
mariootsi

Barb,

I'm so relieved that you will be able to receive your treatment and stay on the same meds.

I wish you a good treatment and no side effects.

Damn cancer.

kduck profile image
kduck

Great news on scans!

Godbeforme profile image
Godbeforme

So glad there is a good plan of action and no tumor growth! I had single beam radiation in 2013, and the first 7 or 8 treatments were a breeze. The 1st day I went was just for the measuring, marking and molding so the beam would go to the right spot each time. I didn't get worn out until the end around #25 or so ... I ended up doing 30 of 32 so I stopped because of burning, it was my decision. hopefully you can zap this thing and go on living without any side effects. Isaiah 53:5 But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed. amen! <3

Barbteeth profile image
Barbteeth in reply to Godbeforme

Gosh you had a lot of treatments...I just hope this won’t wipe me out for long as I’ve been contemplating doing some dressage competitions with my horse and disappointing if I can’t

Thanks for your lovely reply

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

you're welcome! <3

Francesca10 profile image
Francesca10

Barb, that really is great news. I know a few that had liver sbar and most said it was walk in the park compared to drugs/side effects. You will do well and blast that damn tumor away. You have so much coming that is wonderful for you to celebrate. 🙏🏻🙏🏻🙏🏻🙏🏻♥️♥️♥️

Frances

Barbteeth profile image
Barbteeth in reply to Francesca10

Oh you’re the first person I know that knows someone who’s had this treatment..that’s reassured me

Thank you

Barb xx

Francesca10 profile image
Francesca10 in reply to Barbteeth

My ex boyfriend had it done twice. It worked both times. A friend from another post site had it done and it worked for her also. It’s a very targeted therapy with good success. You will be ok. Side effects are treatable. When I had spine radiation I did one high beam dose- had reactive pain- put me on decamethasone and I was fine.

You will be also.♥️

Nat1990 profile image
Nat1990

Brilliant news!! 💕

Purple60 profile image
Purple60

So happy for you Barb. I don’t know very much about the procedure but several women in my support group have gone through it and no one has expressed any regret due to the pain. So hopefully it is one of those things that is painful during the recovery (albeit hoping for the least pain) and then you will be happy you did it!

Barbteeth profile image
Barbteeth in reply to Purple60

Thanks

Let’s hope so

I’m now waiting to hear when it will be..hope soon!

Barb XX

Pollingxx profile image
Pollingxx

Why did they decide on this treatment, is it suitable for only certain people x

Barbteeth profile image
Barbteeth in reply to Pollingxx

Hi there

I have extensive bone mets and also a small liver nodule which has been there from the beginning of my diagnosis but stayed the same

Although bone mets stayed stable my markers kept rising every month...anyway the last scan showed the liver tumour had grown so instead of changing my Ibrance letrazole combo it’s been decided to kill the solitary liver tumour with SABR radiation ...I’m happy with that as don’t want to change meds

Apparently not all tumours can be treated this way..depends on the size and site of the lesion e.g if near the heart or major blood vessel it’s too risky as damage could occur...so I’m fortunate (?!) to be able to have the procedure..there are some risks but I’ll take a chance!

Barb xx

Pollingxx profile image
Pollingxx in reply to Barbteeth

Hi ok

I have bone Mets and small ?? Areas in the liver , on the same combo as you , with a few extra drugs in the trial I am on , at the moment all is stable ?

But I always want to be one step ahead, we need to be x

So

Barbteeth profile image
Barbteeth in reply to Pollingxx

I wouldn’t be having this treatment if my liver met had stayed the same...would just be continuing on the same meds as you are...it’s just another option

Barb xx

Pollingxx profile image
Pollingxx

Ok thank you x

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