Having recently been diagnosed with mets in my liver this now brings my mets to 4 alongside bones, lungs and skin. Worringly my onc said I was quite robust and that some people would be dead with what I have going on in my body, therefore I would be really grateful to hear from anyone who has this amount of mets who are still soldiering on.
Linda
Hi Linda
You are not alone! My secondary diagnosis in September 2009 revealed mets in spine, lungs and liver. As of September 2010 I also had one in my eye!
Today I have found out that the one in my eye has gone - yahoo! JUst ALL the others to sort out now!
I come from a family where everyone so far has died from old age (late 80’s & 90’s) and assumed I would be the same…however, despite having none of the risk factors here I am in this mess. I have always had a strong constitution and remain optimistic that this will help to keep me around for a good while longer.
So stay brave Linda, enjoy every day and hang on in there.
Sue x
Hi Linda
You are definately not alone and I’m not sure that the number of oragns affected makes a huge difference more how your cancer responds to trestment. I was dignosed with brain, liver , lung and bone mets in June 2009. The only complication for me is that not all chemos cross over into the brain so I have have had surfury and radiotheraphy for these mets. currently feeling well and getting on with life.
Sur glad to hear your eye has healed
Louise
Thanks very much for your replies, it’s comforting to know that you have both had all these mets since 2009 and are still going strong.
Sue, so pleased to hear about your eye, that great news. I think you are right about having a good constitution, people tell me I’m tough (we all have to be in this situation) so I hope this too helps me to stick around for a while yet.
Louise, it’s good to know you are feeling well, long may it continue. What’s surfury?
BW
Linda
Surgery!!
Sorry
Louise
I have done some surfery when I was on holiday in Cornwall 2 years ago. It is very invigorating even if you only manage to do it belly flop style. LOL
Sue x
Hi Linda,
My wife Vicky has mets to various bones, liver, lungs and brain. She was diagnosed with extensive bone mets right from the start in the middle of 2005, the others came along later but she’s still managing to smile.
Stay strong.
Best wishes, Stuart
Hi Linda, sorry to hear you’ve got further spread, hang in there girl.
Big Cyberhug,
Alison xxx
I was diagnosed from a referel to a chest specialist in March with secondary breast cancer… Was told I had lung,liver mets and lymph nodes in soft chest area… Was put up for trials as I was HE2 receptive but did not get on with an unexplained query with brain CT & MRI…
Long story short I will at last be starting treatment next wed 1st Taxol then loading HErceptin on Thurs… I feel like I have have been running around like a headless chicken !!!
But reading your comments has made me breath a little easier… ( my primary was May 2007 ( masectomy, Rad, Tamoxifen and Herceptin ) I almost got to 4 years)…
Another fight but you have given me hope…
Heather xx
Louise, I feel a right twit for not realising the typo, sorry.
Oooh how I’d love to do a bit of surfery (unfortunately my bone mets won’t allow that).
Stuart - i’m confused by your profile where it says “27 April 2011 Goodbye my darling” what does that mean? Can your wife still walk unaided with all her bone mets?
Thanks for the cyberhug, Alison, I needed that.
Heather, good luck with the new regime, hope it works well for you.
Linda
Hi Linda
Yes you’re definitely not alone but of course its very scary to have multiple mets. I was diagnosed with bone, skin, lung and liver mets a year ago in May 2010. Docetol chemo did well for me keeping things fairly stable, alongside herceptin but end Dec 2010 I was diagnosed with brain mets. Had whole brain radiotherapy and recently restarted herceptin which finished end of last year. At moment I am doing prety well - tiredness being the main problemsalong with achy knees but current oncologist very encouraging and optimistic. Good luck - I just try to make the most of each and every day and the recent good weather has helped, along with family and friends. Keep us up to date
x
Hi Linda, Re your last post here, Stuart’s wife has sadly passed away. Take Care, Belinda…x
Morning girls
How are you all doing? I have a three day run of scans next week, bone then CT and then MRI to head! Worried? Of course I am but trying my best to keep smiling. I hate this in between bit when treatment has finished and you are waiting for scanm results and wondering what comes next? What will I have to deal with next?
I know the tumour in my eye has ‘melted’ away, found out on 14th April. How these dates stick in our minds, or is it just me?
I keep hoping that little mets spread in lots of places are better than one big one that comprises one organ. I am 4 years on (gone 4th April 1997, see what I mean) from my primary diagnosis. My Onc said that I would be ‘lucky’ to get to 5 years and that 10 years would make me ‘exceptional’. I hoping for ‘exceptional’ like a few others on these threads.
So, let’s raise a glass to being ‘exceptional’ girls! Have a great weekend.
Sue x
Hello all
I’m so glad to have found this (although, obviously not that we’re all in this position, but it can feel like you’re on your own a little bit!) Have been posting on liver and bone mets (as that’s where they started) and they’ve just since found mets in my pancreas (?!) and skin mets…
I’m 27, and only dx with the first primary in October - and they just keep finding more cancer (I’ve told my onc he can stop looking now!!!)
Have just finished 6 three week cycles of Xeloda, Navelbine and Zometa and waiting for a PET scan for the next step.
Susie V - Hope all your scans go well, i know how you feel about the waiting - it’s horrid - but hope it goes quickly for you!!!
Liz xx
Liz and others
We do need to be “exceptional” Susie and you are showing the way with you recent results. Liz I’m on Xeloda and Bondronat (for bones) so am just wondering what Navelbine is good for as I’m mets in bones, liver and lungs.
Get my scan results tomorrow after 2 and half weeks of waiting - not happy about this as feel they are already out of date as have now had third cycle of Xeloda - will see what explanation the hospital can give since usually appt is a few days after scan. Hoping it’s not a sign of deteriorating service…
Fran
x
Hi Fran,
Was put on Navelbine and Xeloda combined for the liver, in an attempt to try and ‘stop it in it’s tracks’ - because the secondaries were diagnosed so soon after the primary. Obv since the other mets have been diagnosed they will (hopefully!) change/add stuff to the treatment… Just waiting to see!!
Hope your scan results are positive tomorrow… 2 and half weeks does seem like an awfully long time!! Hopefully not a sign of things to come?!! Keep us posted
xx
Hi All,
Just wondering how we’re all doing? Fran & Sue - how did your scans/results go? I go for my next PET scan on Friday.
Hope you’re all still “exceptional”!!
Liz xx
Hi Liz and all
Yes, I am doing okay thanks. Been back to hospital today to re-start the Capecitabine as that seems to be working for me. I took the first lot earlier this evening and I am feeling okay so far…
Liz, this is so unfair. You are much too young to be having to deal with all this. I am sending you a BIG HUG.
Sue xx
I, like Susie, would also like to send Liz a big hug and say how s@@t it is that you have joined our thread (in the nicest possible way). Hope the PET scan went OK, i’ve never had one and wonder if I am missing out.
Susie, glad capcetabine is working for you, I tried it for 3 months but it did nothing for me, but at least it’s quite user-friendly.
Fran - how did you get on with the scan results?
Hope everyone enjoyed the sunshine at the weekend.
Linda
Hi all - last scan was pretty good with “stable” liver but bones not so good so am really doing walking every morning after taking the Bondronet as Onc says this helps it get into the blood stream - anything to help… might have to have RT.
Another scan today -yes, finally got the pattern established with nurse of scan and out patient appt on Wed so might have more results by then. Can’t believe that the nurse said “don’t worry if you have to wait for results; things don’t change that fast”. How patronising - so why scan every 6 weeks!!! Anyway she forgot to book this CT appt and I had to phone to ask about it… she finally got back on Friday to say it’s today so I’ve had arrange with former work colleagues to meet up for important lunch and just have water - rant rant!! And they talk about valuing quality of life… some do but others…
Anyway might know results on Wed so am keeping positive about that. Still getting very sore feet and hands from Capcitabine but don’t want dose reduced if it’s just starting to work - OH has bought nitrile type surgical gloves (I think from Screwfix) so I can now prepare food without getting hands sore in cold water all the time or when doing other jobs - that thin protective layer helps protect my hands and does not reduce dexterity so if anyone is struggling you might want to try this.
Sunny day in Midlands - so hi to you “exceptional people”.
Fran
x