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New to forum

9 REPLIES 9
Michy1
Member

Re: New to forum

Hi Daisy,

Was in hospital for 1 week with an infection in my abdomen and mass. On IV antibiotics for 1 week then 1 week on tablets. Found out on Friday the mass is inflammatory, fortunately, but they will keep an eye on it. Also found out my treatment plan which is  letrozole/pablociclib and a bone strengthening drug later.

X

Michelle

Jacksy
Member

Re: New to forum

Oh bless you, Secondarysister,

I’m so glad you were cheered up by my message. I want to share my story when I can as I think it can give people hope, but I really hope it’s not painful to read for those whose path has been more difficult.

Yes, I think I was lobular, but I’ve lost the piece of paper I wrote it on all those years ago. You’re right about being HER2 and ER positive.

All the very best to your mum for her treatment. She’s lucky to have a wonderful daughter like you who is so clued up

take care now

Jx

Secondarysister2
Member

Re: New to forum

Oh Jacksy!! I love your message! Sometimes we need positive stories! Thank you for sharing that you've been living with secondaries since 2007!!

 

What type of breast cancer do you have if you don't mind me asking? I'm assuming you are HER2+ if you are on Herceptin and estrogen + because of the tamoxifen? With you saying Peritoneum, I know this is a common place for lobular to go to. My mum is HER-, but does have estrogen+ and lobular, so I think there maybe some similarities with yourself.

Your post has infinitely cheered me up and brought much hope. Thank you! Xx

 

Jacksy
Member

Re: New to forum

Hi Michy and other ladies,
I just wanted to encourage you Michy that lots of us live well for many years with secondaries. I’ve had secondaries since 2007! First in liver, now in peritoneum/omentum (lining of abdomen) and a small one in my lung. 
my quality of life has been pretty good throughout, and I have an active life. I gave up work two years ago to do a creative arts degree, which I’m loving.

I had chemo initially then have been on herceptin, tamoxifen and Kadcyla since then. Two weeks ago I started a brand new chemo (Enhertu) which I’m finding tough but I’m sure with my team we’ll find the right balance of meds to help make it manageable. It only got through NICE in April.

what I really want to say is, don’t give up hope, there’s plenty that can be done to help you, and there are new drugs being developed all the time. I’ve been fortunate to be on the receiving end of some of them and it’s surprising how many new treatments have come along while I’ve been on this journey.

As others have said, things feel totally different once you have a treatment plan and can get started. I hope that is really soon

Keep your chin up

Jx

Gillyflower
Community Champion

Re: New to forum

Hi Michy,

I'm so sorry that you find yourself here but warm welcome to you xxx  Its a horrible thing to have to go through getting a diagnosis.

I was diagnosed with secondaries in January 2019 where it was found mets had spread through my spine, pelvis and ribs.  A few months after that, the Oncologist was concerned that there was a few mets that had spread to my liver, so my treatment was swapped.

Since being on Capecitabine (over a year now) I've had great results in that there is no further concern about my liver (no sign of mets) and the mets in my bones remain very stable.  I live a good life, working full time from home in a busy job, manage to get out for short walks every day and generally enjoy myself. 

I get some side effects from treatment (skin issues and fatigue) but its actually incredible how much better I am than I was when they first found the secondaries!  I have plenty of days where I hardly remember I have cancer and life goes on.  Many people live with this disease for a long time and although the fear and anxiety of the future never goes away, I think you find your own way of adjusting and learning to live with it.

There are lots of people who live a very long time with secondaries too, as you will see from this forum and other places on the internet - none of us have any guarantee but the positive stories are definitely there so don't give up hope xxx 😊

 

Michy1
Member

Re: New to forum

Hi Liz,

Thanks for replying. Well done that you are stable. Your treatment took ages to start. My mets is in the pelvic bone. Seems like life is standing still. Thanks for the support and positive vibes feel more positive now. Good to be able to share.

X

Michy.

 

 

 

Liz0418
Member

Re: New to forum

Hi Michy . I am 3 years plus into secondary diagnosis and stable on oral meds palbociclib letrozole and zometa infusion every 3 months as bone strengthener. Its horrible waiting to start treatment so empathise.  I had initial wait of 5 months then 2 months before starting treatment . Have secondaries in lungs pelvis and base of spine these are all stable and in some smaller tumours. Once you have a treatment plan you will feel more able to cope and focus on it being treatable even if it's not curable . Sending love and hugs Liz xx. New treatments and studies means more effective outcomes xx

Michy1
Member

Re: New to forum

Hi Daisy1257,

Thanks for sharing with me. Have waited nearly 2 months now for diagnosis and next Monday seeing consultant. Feel like it’s taken forever. It’s all that occupies my thoughts. Yes will be glad when my treatment plan has been sorted out. Have either felt sick or been sick this weekend. Glad to know the website provides lots of information.

Mich1

x

Daisy1257
Member

Re: New to forum

Hi Michy1

Sorry to hear of your diagnosis. I was diagnosed in March this year so it's quite new for me too. Your right it is terrifying but there is so much support and info on this forum to help you through it.

I felt so much better once I had a treatment plan in place. Mine is ER+ and is in bones, liver and lungs. My treatment is Ribociclib, letrozole and zoladex. I'm also on Denosaumaub which is a bone strengthener.

I hope you get a treatment plan sorted soon. Good luck

X

Michy1
Member

New to forum

Hi,

Waiting for my diagnosis to be confirmed SBC with bone metastasis. Life doesn’t seem real and I am terrified. Glad that I have found this forum to share.