Gutted

Had scan results today so 3 months later and it spread from my bones to my lung gutted not the word just feel like I going to die now

Lots love

Karen

Oh Karen …I’m so sorry what awful news for you …I don’t know what to say really but funny face here has been living with lung Mets for eleven years ( I think) and lives with it very well.
Big hugs and we are holding your hand .
Carolyn xxx???

Hi Karen, really sorry to hear about your rubbish news. Don’t lose hope, there are lots of treatments available out there, give yourself time to take this news in and be gentle on yourself.
Sending you cyber hugs,
Janette xxx

Karen So sorry to hear your news but you must believe there will be something out there to help you. Lots of hugs  B xx

Hi Karen,

i am So sorry to hear about your latest news. What a shock! Yes, you need a little ‘me’ time to try and get to terms with what youve been told. I too recall thinking I would be dying soon, when I got my first diagnosis in 2001!  Not a nice feeling. But hang in there.

 

I am absolutely sure they will find something to tackle these mets for you. There are a lot of new drugs out there and more coming every week. I recall you are Oestrogen positive and Hercs negative?

 

Ibrance/Palbociclib seems to be working well for us Oestrogen positive ladies, who live over  in the USA. 

So that drug may be something to discuss with your onc when you next see him. i have got my eye on it…they may not choose it straight away as it hasnt been released for general use here,  yet for us in the Uk.

 

However, Capecitabine seems to help a lot of us for a while… and Im now on Eribulin which also seems to help some of us. (Im going for an mri on Saturday and will hear just how well its doing next Wednesday) 

 

We all go through the 2 steps forward snd then 1 step back process Karen. Its B awful, I know.

Hang in there, something will come up.xx

 

love and hugs???

 

Moijanxx

 

Karen, Progression is always hard to handle! Carolyn is correct, my mets are in my lungs and lymph nodes in chest. I have one met in spine. I have been doing this for 11 years. Right from the start the m I file lobe of right lung has been collapsed, it has never reinvested. My cancer is ER +, PR -, and HER2 -. I got the most time  5 years stable out of vinorelbine (navelbine). Capecitabine got me through two more. Vinorelbine can be infusion or oral. My insurance wouldn’t pay for oral back then. Plus someone told me it’s not available in oral form in USA. It is a very tolerable chemo for most.  Capecitabine was easy for me two. Get your plan of attack in order, have your tears, dry your eyes, and keep having fun!

Hi funny face

Thankyou the oncologist told me that there are tiny modules in my lung said they having mdt meeting and most likely I be starting on oral chemo where I take tablets for two weeks then have week off and then start again
I just seem to not be able to get off this rollercoaster since April 2015 it just been bad news and I just think this horrible disease will not let me have a break

Lots love

Karen xxxx

Karen.
I’m so glad that you have had lots of replies from the ladies here that have so.much knowledge.
It sounds like your are going to be a " cape crusader" with the chemo pills and if you follow the thread on treatments …you will find everything you need to know about se there from the very helpful ladies.
It seems to be mostly sore hands and feet and some times the trots but hey ho …no hair loss .
Carolyn xxx

Hi Momo/Carolyn

Think it carbo something was trying to listen but my head a mess when they were telling me the oncologist said because it aggressive she will try anything to slow it down. I am normally so positive but can’t stop sobbing at minute

Thankyou so much for your love x kindness

Karen xx

Hi Karen
I am so sorry to hear your news , hope you have better news very soon , keep on in there !
sending big hugs
Marcelle xxx

Hi Karen

 

we do know what that feels like…but honestly, they will find something to. Control it, mine went very wobbly this summer and June was the very worst its been, but now its being controlled again…Xxxx

 

the oncs today are very clever, was wondering if you are going on .vinorelbine(navelbine) as that is given on Day 1 and Day 8…by tablet, then a week off…that sounds as iif it really helped FF. 

 

If you have forgotten what they said, you could call your nurse specialist and get her to recap. i often take someone with me to make notes…as I have the same problem as you!

 

 You could ring the bcc hotline, the staff there are really helpful and have a lot of knowledge and ideas.

 

Also, sounds as if you could really do with some peaceful time out from thinking about it…maybe find a good friend and do something nice, see if that helps…you can also try ‘Head space’ an online mindfulness programme whch is free at the first level, I found that really helpful.

 

let us know how things go…we are all here for you.

 

huggy thoughts,

Moijan???

 

Hi moijan

Thsnkyou for your lovely message the oncologist said I would take a tablet twice a day for two week then have a week off then start again with two week on one week off if that makes any sense

Think because I been away and been so well it just hit me like a brick

It so nice having you lovely ladies to talk to and I really appreciate your advice

Lots love karen xxxcx

Yes, that makes sense, some drugs are given that way, maybe its Capecitabine as that is twice daily. If so, they will be a pnky salmon folour. A very good drug which worked for me for about two years, but Barton has been on it for many years.

 

hang in the Karen, wanted to say, …its a very lonely place to be when your’e inside your head and all the thoughts feel so very real.

 

our brains are trying to protect us by giving us warnings…but usually the thoughts are much much worse than reality, because, in fact there are options to try. My cancer reacts really badly to stress, so, 

i try to pace myself, get some sleep( not very good at either)

 

will be thinkng of you,

 

love and hugs

 

Moijanxx

Karen
You just need to find the drugs that work for you, yes have a good cry and feel sad but then think how precious everyday is and try to live life rather than living death. Enjoy even the small things because time for everyone is the one thing you can’t have twice.
Hugs xx

Wendy…so very true and you put that so nicely…thank you Moijanxx

Thankyou that is so true

Lots love

Karen xx

Dear Karen

I do hope you are feeling so much better now the ladies on here have said it all and given good advice.

I have spent nearly 4 years now fighting this disease this time and recently was told I now have lung and liver mets but I have felt really good on my new treatment and my favourite saying is I am living with cancer not dying from it I intend being here much longer yet.

So start living forget the negative side and if you are to have tablet form of chemo it will give you much more time to yourself good luck.

 

Love and (((hugs)))  xxx

Hi Mono
I am Her2 negative and ER PR positive the chemo nurses tried to give me as much information they could but all I keep hearing is the oncologist saying the cancer very aggressive

i will find out the chemo drug next Thursday when I go back just said it be tablets and take two a day for 2 weeks then 1 week off and that be the cycle

Lots love

Karen xxx

Thankyou Stacey

I completely agree just seems to frighten you more but I will keep fighting

Lots love

Karen xx

Hi Karen,

 

hang in there…its such a scary place for us all, but one day soon, you will feel a bit more settled. Anxiety cant be sustained at such a high level for that long without falling. Try and distract yourself a little. There are a few things on the anxiety thread…one is ‘Head space’ an online meditation package free at the first level. 

I tried that abd it really helped to control those racing thoughts.

 

also spend time with those you find useful…avoid people who panic you, for a while.

 

hugs, Moijanxx