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SCANXIETY!!

Member

Re: SCANXIETY!!

Hello Marirose and Helen, just wanted to add my congratulations to everyone elses about your good results! Excellent! Long may the benefits continue. Hugs. Barton.x
Community Champion

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Oh Helen what great news just what we like to hear.Woman Happy

Member

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Great news Helen X X 

Member

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Brilliant news Helen.  Xx

Member

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Wonderful news Helen.
Best wishes xxx
Member

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Hi everyone
Wishing you all the best for your treatments and just wanted to share some good news -ct scan results today were good with no evidence of disease progression! Very relieved.
Take care of yourselves, love Helen x
Member

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Great news xxx

Member

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Brilliant news marirose 😁 X X X x

Member

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So pleased to read your news too, Marirose! xx

Member

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Brilliant news! I am really happy for you Marirose. xxx
Member

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Great news Marirose xxxx 

Community Champion

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Thankyou for your well wishes you must have helped me. Everthing stable and it looks as though the bone mets are healing Yipee. So well done Capecitabine

 

Good luck to others waiting results xxx

Member

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Hi Marirose, I really, really hope everything goes well for you tomorrow. I'll be thinking about you. xxx
Member

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Good luck Marirose, will be thinking about you 

Hugs Janette xxxx 

Member

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Keeping my fingers crossed for you xxx

Community Champion

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Hi

Scan result day tomorrow to see if capecitabine is working got a feeling it isn't.

 

Good luck to anyone having results this week X

Community Champion

Re: SCANXIETY!!

Hi everyone 

thought I would bring back this thread so many have had scans and waiting results .or are having them it is hard to keep up with you all.

 

So I am bumping up for Jultz

Congratulations Jultz you must be so excited with your results xxx 

Community Champion

Re: SCANXIETY!!

Hi Tomboy
Nicky got me to question my onc about receptors and mine changed 3 times I now know hormone treatments are no good anymore. Best Wishes and Happy New Year to you all xxx
Member

Re: SCANXIETY!!

Hi Tomboy,

 

I can echo what Nicky has said - my oncologist does research (Guy's, Queen Mary's and QEH), says 'cancers change'.

 

Best,

 

Julia x    

Community Champion

Re: SCANXIETY!!

Hi tomboy

If you have the energy and the determination you should pester your oncologist! My oncologist nearly fell off his chair when my results came back HER2+ he was not expecting it and my BC still acts as if it is HER2- meaning that is not a high grade and not super aggressive which is what really scared me when I knew it had changed. I'm also 8/8 ER and 6/8 PR so it doesn't mean you can't be HER2+ as well, which some oncologists also think. It really is a faff to have to keep on at your medical team but when I went for a second opinion at The Marsden the head Prof there (for secondary BC) said all secondary BC should be biopsied as receptors are known to change.

Nicky x

Member

Re: SCANXIETY!!

Hi everyone. Thanks for taking the time to reply to me. I've had a really "down in the dumps" day today. I guess I naively thought I'd get years out of anastrazole. Instead I've burnt through this and tamoxifen within a year. I didn't expect to be ticking off the treatments so quickly. Really scared for the future as I'm entirely asymptomatic and feeling really well right now. As for HER2 status I've been banging this drum with my onc for months! The hospital where I had the liver resection done analysed my tissue and the results came back "inconclusive" My own hospital did their own test but it seems to have got lost within the computer system (argh!) They don't seem to be in a hurry to chase this up as they're convinced I'll still be HER2 negative. However I'll keep persisting! It would certainly explain why the hormonals aren't working despite being 6/8 ER+ and 3/8 PR+!
Community Champion

Re: SCANXIETY!!

Hi tomboy

Sorry to hear about your recent scan results and the effect this will now have on what you had hoped to be doing job wise.

Just a thought - have you had a liver biopsy done recently (or at all)? Receptor status can change in a higher percentage of women than a lot of oncologist's give credit for, especially from HER2- to HER2+, as mine did. Although I am still strongly hormone positive it does mean that this type of treatment ie hormone  will not be as successful for me on its own and I am now  also having Herceptin (and Pertuzamab) which I have not had before. 

Sending you a hug as its not the news you would have wanted to hear when you got your results.

Nicky x

Community Champion

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Should have said Tomboy x
Community Champion

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Sorry your results were not what you hoped for just like me but we still have to stay positive there are so many treatments to try.
Wishing you lots of luck for the new year xxx
Member

Re: SCANXIETY!!

Very sorry to read your news.Response to treatments seems so random sometimes. But this means that it can be unexpectedly good too - I hope the next one works really well for you.

 

Tournesol x

Member

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Tomboy, so sorry you didnt get the news you'd hoped for. Try to take comfort in that there are treatment options out there for you..one will come good, i'm sure. Love and hugs.x

Community Champion

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Hi Tomboy, grrrrrr, I know this s not what you wanted to hear, but take a deep breath , get some sleep tonight and know that a plan is in place. Hugs Marie xxxx

Member

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Oh Tomboy81 I'm sorry love, not the news we wanted to hear. Stay strong sending you huge hugs 

Janette xxxxxxx 

 

Highlighted
Member

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*waves to Janette* Thanks for your kind words xxx
Member

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Hi all. Not good news. After enduring a liver resection back in September to remove a solitary liver met I now have 2 liver mets. I also have 2 new bone mets to add to my existing 3. After non-effective tamoxifen it seems anastrazole is also doing nothing! Onc wants to keep cape in the back pocket for now and try me on the e/e combo (especially before the NICE review in April!) Job abroad is definitely off the cards for now. One word- gutted.
Member

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Hi Tomboy81, nice to hear from you, hope your results are good, please let us know how you get on. 

Hugs Janette xxxx 

Member

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Thanks Marie. Friends and family are great but it's only ladies like you who know what this truly feels like! Hope you're getting on OK too. Oodles of Love back! xxx
Community Champion

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Hi Tomboy , thinking of you and sending oodles of positive vibes, take care xxxx M

Member

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Hi Marie. I have scan results today and expecting to hear the same as you. I was given a CT scan in error a couple of months ago which showed "possible deterioration" Getting the results from a PET scan today (the one I should have had in the first place!) Just hoping my major organs are clear- I had a liver resection back in September to remove solitary 2.5cm met. So much is riding on this today. Hoping to take up a job abroad but if my results are rubbish my dreams could be going down the toilet... Good luck to anyone else sweating in a waiting room like me today! X
Community Champion

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Oh Marirose, thinking of you. Please take care, come over to the cafe and look at the  Christmas lights and share a glass of mulled wine . Marie xxxx

Community Champion

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Hi just giving a update on my bone scan wasn't what I wanted to hear. A substantial deterioration from the last bone scan. It explains why I have more pain.

Hope anyone else getting results get better than mine. X
Community Champion

Re: SCANXIETY!!

Hi everyone

FF thanks for your well wishes I am now on Cape started yesterday I had a bonescan today now I have got 3weeks to wait for the results I hope I am not tempting fate but I feel quite good. Maybe in another 2week I may feel different.

Again thanks to all of you for your good wishes and I hope everyone waiting for results will get good news.

Best wishes xxx

Member

Re: SCANXIETY!!

Hi FF,

 

Thanks for that explanation. It's just come on trial here, so I might be lucky enough to get it that way. It's in combo with PI3K inhibitors. I will send you a link with the info. As I said earlier, I read that Palbociclib (Ibrance) worked so well in trials in the States, that patients in the placebo group were moved over to the real drug, so they could benefit. Of course this gave Pfizer their best advert ever, but... who cares if it works.

 

http://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=NCT02389842#ContactLocation

 

May your success continue!

 

Best wishes,

 

Julia 

Community Champion

Re: SCANXIETY!!

Julia, I live in the US. Ibrance is expensive. It wasn't as costly as abraxane and avastin combo. In the US infusion chemo goes under a different part of most people's insurance. Oral chemo falls under most people's prescription plan and a lot if people don't have a prescription plan. Ibrance cost around $10,000 for 21 days. Abraxane/avastin chemo was $60,000! These prices are crazy!  I hope that Ibrance is available soon for you ladies. FF

Member

Re: SCANXIETY!!

Hello FF,

 

So happy for you that your combo is working. I had no luck with Letrozole but have heard amazing things about Ibrance. I read about it six months ago in articles from the US and asked my onc about it just over 3 mos ago. He said it would definately be a possibility when/if it becomes available in the UK, as it isn't approved by NICE yet and costs a fortune. 

 

Hope you don't mind me asking but, are you on the PIPA trial? I have a feeling that my current trial drugs aren't working (I will know more in two weeks after CT). Thanks in advance for any info.

 

Best,

 

Julia 

Member

Re: SCANXIETY!!

Sorry to hear your news Marirose. I'm glad you have a new plan in place. Try and enjoy your break for the next couple of weeks. Definitely times for some fun and treats in the cafe xxx

Community Champion

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Marirose,  I'm so sorry your treatment has failed. We all understand how disappointing and scarey it is! I did "cap" for 2 years. It was nice not having infusions! Was a nice break from the cancer center. I hope that your disappointment can be overturned with the new treatment! Hugs, FF

Member

Re: SCANXIETY!!

Marirose, really sorry your results weren't too good, stay strong I'm sure your new treatment will give you better results, also it's worth taking on bored what Nicky has said about receptor status changing.

You take care hugs Janette xxxx 

Community Champion

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Marirose, just wanted to say , I know the results were not what you hoped, BUT a plan has been put in place..At times like this I imagine us all holding hands, we are all with yoy. Take care Marie.xxx

PS if you fancy a little drink I will be in the cyber cafe tonight and I promise not to behave !!!!

Community Champion

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Thanks Nicky

I never thought I wanted to ask about biopsy one of my ulcerated skin mets is on the tumour and it secretes fluid but then other things took over. Never mind I could ask next time I see her in 2week.

Community Champion

Re: SCANXIETY!!

Hi Marirose.

Sorry to hear that the E/E combo is no longer working for you. Just a thought, have you had a biopsy done recently ie since your mets were diagnosed as receptor status can change. If you have a tumour in your chest wall is is possible to biopsy that? Sorry if I'm talking out of place here but I changed after 10 years of being HER2- to HER2+ which meant that hormonal treatments would no longer work (on their own). I'm now on Herceptin and Pertuzamab together wth hormonal tablets after finishing chemo at the end of last year.

Good luck with your new treatment and build up your strength over the next couple of weeks before you start the new one.

Nicky x

Community Champion

Re: SCANXIETY!!

Well today was my results, not good my chest wall tumour was 16mm it's now 27mm but on the good side all other mets are stable.

I am now finnished with the e/e combo Hormone treatments will no longer work so I am taking 2weeks rest before I start my new treatmen of Epirubicin or Capecitabine.

 

I really do hope all that are waiting for results are better than mine xxx

Community Champion

Re: SCANXIETY!!

Hi FF

So pleased to hear your news long may it continue you deserve to celebrate. I will send Cyber Cheers across the ocean. xxx 

 

 

Member

Re: SCANXIETY!!

Fabulous news FF! Long may this period of stability continue.
Helen x
Community Champion

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Thanks everyone! Belinda I just found the message and responded.FF