this morning at my oncologist appointment before my treatment I happily lisined as she read out my wonderful mri results. All my 12 large liver tumours shrunk to scar tissue hooray. Suddenly I saw her face drop as she read on turning to me explaining I had multiple metastasis along my thoracolumbar spine T11 L1 L2 L3 I thought perhaps the floor may open and swallow me as being right there I thought was the last place on earth I wanted to be. Last night I had woken up and I knew deep down somehow news of this sort may happen today and I was right. So ladies please help. I have good news regarding my mets to my liver. But am I doomed now with bone mets. Right now I'm forgetting to breath. I want to grow old forget the wrinkles I never wanted or the grey hair I now want so much I just want to live a long life. Am I dreaming chasing gold that can never be. I do no longer think I can ride this roller coaster it is causing me great grief pain I find that never goes away I'm never going to be happy again I'm sure. I desperately need to live my beautiful 2 year old French mastiffs life out because no one would care and love him like me I apologise I'm wallowing in self pity I know I am and I can't find any peace I'm so very frightened and ashamed

Hi ya sam ..big huggs dear....what a bummer not a good day...many gals with same progression who have had next therapy and have improved..i regularly read posts on breastcancer.org where mbc people have more info on their types of mets and therapies they have ..they provide great info and very uplifting posts ..did a partial hike uup mt warning this morning to see how fit i am .....other than ankles play up as on leterzrole did ok l best bright

Hi again What treatment was proposed by your onc?

She has suggested radiumdenosumab and letrozole has anyone done these. If I have radium how would it affect me side effects wise and the others.

I beleve radium used to shrink tumors and other used to control progression . Looks like you have hormone pos mbc..Have you gone to ...breast cancer.org..I recommend cup of tea a dog on leash go girl..

Hey Sam. That's not good news. No wonder you feel awful; anyone with any sense would be terrified--it is a nightmare. Thing is, none of this is your fault. I don't know what you mean about feeling ashamed, but I hope it isn't connected to any idea that you could have avoided being in the situation you are in. Cancer is cruel and sneaky and doesn't discriminate--nothing can keep anybody safe. Yes, we can take advice about looking after ourselves, but the shitty thing is that luck plays as much a part as anything else.Don't give up, Sam. There are ladies here who have been living with metastatic disease for a long, long time. Sure, it's not what you want to have happen, but it doesn't mean that you won't ever be happy again. I bloody hate rollercoasters and wouldn't want to be on the one you are riding at the moment but, realistically, any of us could already have bought a ticket without even knowing it. This really is a shit of a disease. Marg XXX

This is a nightmare I cannot wake up from

24 Replies

jena
Member
9 years ago
Hi @Sam09

You are evidently keeping very fit. It must be lovely having the support of your daughter. What is her sport/s

I've only managed to maintain a modest level of fitness recently due to the pain in my hips and spine. My morning dog walk is only about 1 km - our 2 little elderly shitzu mixty dogs aren't up for much more these days; one has gone blind & the other has bad arthritis, so we are a sad looking lot, but it is quality family time.

I recently bought a spring spring wet suit, to keep my back & hips warm, so I can swim at the beach and get my heart rate up while not bother my hips - but I was a a sook this week and turned off by the cold weather. I'll get back in the water on the weekend.

In the afternoons I cycle. I've put slicks and a gel seat on my full suspension bike ( I don't think I'll be doing single track any time soon
Sam09
Member
9 years ago
Hi Jena
my exercise keeps me sane. It's the only control I feel I have left. I push myself to mountain walk daily walk my beautiful French mastiff every morning along the beach for 6 kilometres and do weight sessions 4 times a week. My daughter was an elite athlete so we are gym buddies. I used to be a fitness instructor so it's vitally important to me.
jena
Member
9 years ago
Thank you for your warm message @Sam09. Let's keep in contact.

How are you going with keeping fit / exercising? I'm frustrated as I can do so much less than I want to. How I miss long bike rides, hiking and what not! I do have a series of back exercises I do daily, I always feel good doing them.

I'm off to Lismore for chemo and appointments with my radiologist & oncologist tomorrow. I'm meeting with the radiologist as I have a bunch of questions following my last treatment.

Thinking of you and wishing you healing energy.
Sam09
Member
9 years ago
Jena
cyber hug your not alone
I feel your pain and feel your fear too. Only we know this feeling. My world and yours has come crashing down. I would tell you to stay positive but I'm having trouble getting my head around everything myself. Guess I'm hard to live with and have been since my diagnosis. Like you I'm a health nut and can't understand why we got this. Sigh.
I will read your introduction story now. Thinking of you as we ride this train together
I'm glad I have company and someone to sit with
jena
Member
9 years ago
Hi @Sam09. I'm sorry to hear of your diagnosis. It is a total s*~t and such bad luck. Bad luck I share with you.

I was diagnosed on 1 May this year. Inexplicable back pain for some months turned out to be mets in my spine. ( I introduced myself on the newly diagnosed thread if you are interested in my short story) I still find it hard to believe, especially as I've always had a healthy lifestyle; healthy eating, plenty of exercise & naughty things ( wine & chocolate
angg66
Member
9 years ago
Hi @Sam09. Sorry to hear about the bone mets. In early 2016 I was diagnosed with mets in my liver, bones & lymph nodes in the chest. Up until a few weeks ago all were stable. Now the mets in my chest lymph nodes are starting to increase but very slowly, so I've just started chemo. When I originally found out about the mets I fell apart & cried for weeks. But as you say, you can either sink or swim. I choose to swim. I continue to live life to the fullest for as long as I can. I owe it to my kids! Ange xx
Lisa1407
Member
9 years ago
If you are going to get mets, bone is the best place to have them as there are relatively effective treatments. I was first diagnosed with breast cancer 18 months ago and had numerous tumours in my hip. Although I have tried a number of treatments which worked for a while, they found out the mutation that caused my cancer by doing DNA sequencing of the tumours and suggested Afinitor would work well (as it targets the mutation). I have also been having Denosumab monthly. I am pleased to say that after 3 months on the Afinitor, I am officially in remission and the tumours in my bone have disappeared completely. The Afinitor is a bit of a nasty drug and I am battling with pneumonitis at the moment. There are lots of drugs that they can try, so hang in there and don't give up! Your dogs need you! xx
iserbrown
Member
9 years ago
@Sam09

Hi Sam - can't offer much except to ask!

Do you know about the Otis Foundation? http://www.otisfoundation.org.au/
They provide free holidays for us! Check it out

Pleased to read today that you had found yourself, sink or swim and you're surfing!

Take care
Sam09
Member
9 years ago
Tennille your an angel thank you. Well have great hope because in 8 months my huge 12 tumors shrunk so much they can't see them. I did chemo once and i am on perjeta and herceptin. I have had a change of heart last night seeing johnny ruffo talk about his brain cancer with such positivity. It was inspiring. I lay in bed last night and made a decision I either sink or swim. And today I'm surfing and you've helped. Love and hugs to you and thank you for caring about me to comment when you are with me on this journey.
Tennille
Member
9 years ago
@Sam09 I was diagnosed 4 months ago with mets to liver and innumerable mets to bone. I am more worried about liver mets because you need you liver to live. I am on Letrozole,Denosumab, Zolodex and just started on Xeloda (chemo tab) My onc was also more concerned about liver than bone mets. Try and stay positive hun, I know its hard as I had a few flat days after finding out I had to have chemo. If you can manage your pain and keep your bones strong then it can be managed for many years.