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Gutted

37 REPLIES 37
fruitynut
Member

Re: Gutted

Thanks for all your responses, it's been very helpful.

apparently everolimus is being reviewed regarding cost but my onc says there's a window currently and he's putting me on it in two weeks!

Carolyn52
Member

Re: Gutted

Hello ladies that know

I'm sure a few months ago the news said that everolimus had been withdrawn from use ..even from the drugs funding as it was too expensive ..there was a lot of fuss and a petition i think?
So ..if ladies are still getting access to it ..does it mean its reinstated ?
Xxx
Marirose
Member

Re: Gutted

Hello Fruitynut

Welcome to the forum in Treatment and medical issues you will find more about the E/E combo and it's side effects. I have been on this combo and stayed stable for 16 months I have multi bone mets Liver and lung mets. 

The side effects are worse at the beginning but you soon get them settling down. I had a very bad mouth even though I cleaned my teeth after food and used all the right stuff. My dentist during a checkup told me that acid reflux was the cause of my trouble and advised me to see my GP.

Marie123 has just started this treatment about 2 months she is doing very well with se's so she will more than likely see your post and get in touch with you.

But do let us know how you are doing and just stay positive we have all been in that dark place that you find yourself in and remember you are not alone on this site.

 

Love and (((hugs)))  xxx

Carolyn52
Member

Re: Gutted

Sorry f ruitynut
What a numpty I am u have posted in private forum so you have already found us and all the threads .
Have a look through and find somewhere you feel comfy and join us .
Xxx
Carolyn52
Member

Re: Gutted

Hello fruitynut
Welcome to a place where we all understand and can offer support through all your dark thoughts ( always at night)
I too have been on letrozole for my bone Mets a year now and panic sometimes it is going to stop working and keeping the little c blighters under control.
It sounds like you are now moving on to a alternative treatment which a lot of ladies here have been on and no doubt will be able to help with should you get ant side effects.
Maybe you would like to join the secondary private forum where we have word games, gardening clubs , book club etc .
Please have a rant, throw your rattles out the pram or scream ...we understand.
Hopefully you can keep working as that sometimes becomes more normal than sitting at home in three day old pjs and watching Jeremy Kyle !!!!
Carolyn xxxx


fruitynut
Member

Re: Gutted

Hi everyone

I'm new to the forum. I was initially dx in 2010, had sugery and tamoxifen. Just before the 5-year mark was dx with secondary bone mets in rib, spine and pelvis ER+. I've been on letrozole for almost 2 years. Last week saw the onc after scheduled MRI and bone mets have spread further down my spine and onto liver. Still feel a bit shell-shocked and bone pain always increases under stress!

I've been put on examestane and waiting for prescription of everolimus to boost treatment but feel like I'm walking uphill. I work full time and exercise daily but I can't help worrying about how side effects will affect both of these things. I also have monthly zometa and zoladex.

Sometimes I feel fine, (I blank things pretty effectively!) but other times I feel so despondent. My family and friends are hugely supportive but I don't discuss the dark days as I feel it's too much for them. My husband is the only one I talk to candidly but the cancer is constantly on my mind and I don't want to talk to him about it constantly- it gets boring....

The cancer has stripped me of my vitality and sexuality as a woman and I feel I've lost a part of me in all the hormone treatment. I grieve the woman I was and am trying to come to terms with the woman I am but its a big ask sometimes.

I am someone whose cup is always half full and always look for the positive, but this latest dx has knocked the wind out of me.

It has been heartening reading everyone else's positive comments and hearing people's fears and anxieties as well as the positive treatments is sobering.

Thanks everyone for sharing their comments.

Karent
Member

Re: Gutted

Hi mono

It the cape chemo I think as Anne has put below see oncologist next Thursday so will let you know

Big hug

Karen xxx
Karent
Member

Re: Gutted

Thanks Ann

Yes this is the drug the oncologist mentioned , thankyou I will let you know when I start

Big hugs

Karen
Momo
Member

Re: Gutted

Hi Karen
Want you to know you're in my thoughts. Hope you're feeling better now. If you want to please share the name of the drug so that I can let you know if this is similar to what I may have used.
Lots of love
Moijan
Member

Re: Gutted

Yes Annemay, you took the words out of my mouth,

bless you

 

Karen you are dong all the right things, we are all here for youxx

 

Moijanxx

Anneemay
Member

Re: Gutted

Hi Karen

the treatment you have described sounds like the one I have just started on which is Capecitabine, you have to take it twice daily, morning and evening preferably 12 hours apart and the dose is calculated on your weight and height. So far I have seemed to have tolerated the treatment without any major problems and reading through the Cape thread it seems to be a generally well tolerated and manageable chemo. I have mets. in pleura,lung and bones, which I also was gutted to find out a year ago after being clear for 13 years. I have worked my way through the tears, the anger and of course the fear that I can't be cured. There is no such thing as a magic wand to make it disappear, so I am putting my faith in my oncologist to find a treatment that works, so that I can get on with living my life again. I am sure that your oncologist will put you on the most effective treatment to treat the mets. and if that doesn't work there will be other options, so please try not to worry. Sending a big hug. Ann xx

rosie53
Member

Re: Gutted

Hi Karen, thinking of you, just want to echo what the other ladies have said. 

Stay strong. 

Hugs Janette xxxx

Moijan
Member

Re: Gutted

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

Karent
Member

Re: Gutted

Thankyou Stacey

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

Lots love

Karen xx
Stacey
Member

Re: Gutted

Hi Karen,

 

I just wanted to say that I'll be thinking of you and hope that you will eventually feel more positive.  I know it's something I really with struggle too.  

 

Doctors sometimes seem to toss in words that we hang on; if they only knew the effect they would edit what they said a bit better before they spoke. I does not mean it isn't controllable or can't be knocked back hard.   

Karent
Member

Re: Gutted

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
Momo
Member

Re: Gutted

Karen,

i was scared when I first learnt of my lung collapse. What eeally matters is the level of oxygen in the blood. You can buy a finger pulse oximetre from Amazon and report to your oncologist measures three times a day. They were against aspiring the fluid and my oncologist consulted a lung specialist who said it could have devastating effects. So they are currently trying to deal with my lesions as the only way out. One of my larger tumours is on the pulmonary membrane hence making it so difficult to treat as very little blood reaches it. They cannot operate nor use radiotherapy as it is so close to the heart. I can't tell you how painful it sometimes gets. I hope that it shrinks of its own accord. 

The moral of the story is that every case is different. As long as they find something to which you respond they will be able to keep it at bay. Cry your head off, then vent, then pull yourself together and go for a short walk, do something fun and allow yourself to go through all moods as they come. This is the only way that you can be mentally and psychologically strong. My oncologist told me that 90% of the therapy depends on your psychological wellbeing. So go through all these emotions but make sure that agony does not overwhelm you. You need to cry and vent but you also need to uplift yourself. 

We are here for you, we need to know more about your case to give you practical advice. Are you her2, ER and PR negative or positive? Why is the name of the pills? Please let us know as soon as you are aware of them.

stay strong and a big virtual hug for you 

Marirose
Member

Re: Gutted

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

Karent
Member

Re: Gutted

Thankyou that is so true

Lots love

Karen xx
Moijan
Member

Re: Gutted

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

Wendymb
Member

Re: Gutted

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
funnyface
Community Champion

Re: Gutted

Momo, I don't know how long your lung has been collapsed. Mine collapsed and I used an incentive spirometer like 10 times a day and did it about 25 times each of those sessions. It reinvested. My onc had said it wouldn't work, so did pulmonologist. Therapist and internet said it could. FF

Barton
Member

Re: Gutted

Hello Karent, just joining everyone else offering commiserations. But everyone else is also right, there are many treatments still out there for you. Many people have gone a good few years with lung mets (see funnyface's post). Currently I don't have lung mets, but I do have bone mets. We all get down occasionally, and rightly so - you wouldn't be normal if you didn't, but, after starting a new chemo and getting into the routine, you will hopefully find the "new normal" and feel a bit better.

 

Wishing you all the best.

 

Hugs. Barton.x

Moijan
Member

Re: Gutted

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

Karent
Member

Re: Gutted

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
Moijan
Member

Re: Gutted

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💚💙💚💚💙

 

Marcelle
Member

Re: Gutted

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
Karent
Member

Re: Gutted

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
Momo
Member

Re: Gutted

So sorry Karen. All of us here understand how you feel. Many of us have been through this. I've been diagnosed with lung mets as well as lesions in the spine and rib. My first chemo failed and my lung collapsed. But they kept trying till the current combination seems to have some effect. Let us walk through this together step by step. We are by your side. If you have tested ER and PR +ve then may be it is worthwhile to start some chemo and then later use hormonal treatment as maintainance. I hope that the current regimen works for you. Is it by any chance Xeloda?

big big warm hug 

Carolyn52
Member

Re: Gutted

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
Karent
Member

Re: Gutted

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
funnyface
Community Champion

Re: Gutted

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!

Moijan
Member

Re: Gutted

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

 

JulieD
Community Champion

Re: Gutted

Oh Karen, I'm so sorry to read your news, it's no wonder you are feeling gutted but please don't despair. It is hard to learn there has been progression but there will be treatments and they could work really well for a long time so try to hold on to that hope. At the moment you need time to take it on board and get your head around it, be gentle with yourself and take the time you need. We are here if you need to offload and we are all sending love and strength xx

bonariensis
Member

Re: Gutted

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

rosie53
Member

Re: Gutted

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
Carolyn52
Member

Re: Gutted

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💓💓💓
Karent
Member

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