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Just dx with liver & lung tn sec...scared sh****ss

16 REPLIES 16

Re: Just dx with liver & lung tn sec...scared sh****ss

Hi Chatty Katty, I've just read this thread so only just heard your news - I am so sorry, it's so crap for you and your family. It's what we all dread but at the same time subconsciously try to prepare for, I think. i finished my treatment chemo, surgery rads in December 2012 and now on tamoxifen - like you have 2 children (11 and 13) and I remember reading your posts and loving your picture with you and your girls! Don't give up hope, we have to keep going and believe the treatment will work. i will be thinking of you and sending you lots of positive vibes. stay strong, Em Xxx

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Re: Just dx with liver & lung tn sec...scared sh****ss

Thanks mandyp...its that blooming tn thing thats hard to get your head around! You just think come there muat be something other than chemo out there?. Anyway wishing all the best with the rt...I found it pretty easy going compared to chemo just slap that aqueous cream on. Good luck x

Re: Just dx with liver & lung tn sec...scared sh****ss

Chatty Katty
I just wanted you to know that I am thinking of you often. I read your posts when I first came to the site.....back in November and was inspired by them. I'm TN and have just finished chemo and am having RT.
I was upset when I read your post on the 24th March and wanted to reply but bizarly didnt know what to say. What you have been dealt is my biggest fear.....and I'm sure many others.
You don't deserve this...no one does. And your family don't. But you will cope with it. you have no option. It sounds like you are in really good hands. And they are making advances in medicine all the time. Who knows what will be available in a years time........
Keep on keeping on.
Lots of love
Mandy P (december chemo thread)
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Re: Just dx with liver & lung tn sec...scared sh****ss

Little update... Emotionally I'm a bloody mess again!! It was my birthday 11th April, had my hair restyled, it looked great. Had a flying lesson as a surprise pressie from my lovely parents and a fab meal out with the whole family. Went away for an amazing weekend in Cornwall with them all. So that's the good, the bad is MY HAIR.....after being told by bcn, onc, chemo nurse that it would be extremely rare for it to fall out, it started falling the day after my birthday (exactly the same day as last year!). Emotionally I am finding it really hard to deal with after being told it wouldn't. Last time I shaved iwas it was a definate yes it will, this time I'm living n hope that it is just thinning. I know its stupid, its only hair, but I had just got used to it being short and curly, dare I say it I'd started to like it. Mentally it's easier to deal with this horrible disease if you can look in the mirror and outwardly look ok, now I look ill. It's really set me back, I'm crying on and off everyday. On sleeping tablets and thinking about anti-depressants, but just feel like that is giving into the ba****d disease.
i have a date for my ct scan to check the chemo is working (15th may), so feel I need to get mentally and emotionally stronger for then, just in case. I can't imagine how I'm going to cope if its bad news again, just keep thinking 1 in 3 get breast cancer....tick...1 in 5 of those get tn...tick...rare to get allergic reaction to doxetaxal ....tick....unlikely to go neutrapic sepsis....tick...extremely rare for hair to fall out....tick!!!
Anyone got any advise on how it cope
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Re: Just dx with liver & lung tn sec...scared sh****ss

Well I'm 3 days past my 2nd chemo and not doing too bad. Obviously get tired easier, and I'm so pleased my temp is staying normal, as last year it rocketed and I ended up in hospital neutropenic sepsis!....so so far ok. I have finally got a bloodes form to go ahead with the brca gene test and finally got an appointment with the counselling services.
it amazes me how much crap humans can take....it keeps getting thrown at you yet we just keep on going. I'm managing to get through each day without bursting into tears every few minutes. Don't get me wrong I'm still having my moments but they less and shorter!! I just myself i kick up the bum and think come on get on with it girl.
Hows everyone else getting on with their treatments etc.
kathryn
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Re: Just dx with liver & lung tn sec...scared sh****ss

Hi
Sorry you have to join the secondary brigade but as you can see from the replies you've had already there are many different treatments out there and it sounds like you are in good hands. I also went to The Marsden recently for a second opinion but am happy with the treatment I get at my local hospital - just needed a bit of a confirmation that it was the right plan.
Good luck and hope you don't have too many side effects with your chemo combo.
Nicky x

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Re: Just dx with liver & lung tn sec...scared sh****ss

Hi pretty sh*** isn't it. I found out 19th march days off the date I found out about my primary dx last year!...I have a 12 and a3 year old, I'm finding it really hard to even look at them. I had my first chemo Monday and due another on Easter Monday then a week off. Im on gemzar and carboplatin, so far feel ok. Just cannot believe its come back so quick yet felt ok.
wishing you all the very best for your treatment and long may we kick a*** x
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Re: Just dx with liver & lung tn sec...scared sh****ss

Hi Chitty Katty,

I was diagnosed with liver, lung and bone 2 weeks ago now. am am terrified I have 2 wee ones at 7 and 4 I have had 1 chemo so far and next one due on Thursday, its weekly taxol. I am sorry to hear of your diagnosis and I totally understand what your feeling just now as am the same. We will fight the fight and take each day as it comes.

Jill
xxxx
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Re: Just dx with liver & lung tn sec...scared sh****ss

Hi Chatty Katty, seems like all i do is look on this site for inspiration, am 37 years old with 3 kids, 5,8 and 10, i am was dx with BC and secondaries to my bones a few weeks later after scans, my world has just crashed, it is so hard to get your head around it, all i want to do i see my wee kids grown up and be a mummy, but reading on here there is such good stories it does give you abit of hope, i am only being treated now with tamaxifen, to see how it does for 3 months and get scanned again, i just feel i am waiting about to c if it has been contained with got worst, don't know if i should insist on getting heceptin and chemo now and really blast the shit out of it, but the angry, confusion and why is this happening to me is the worst of all, i live in hope that some day real soon they will find a cure for this shitty diesease, they really have to.......xxx
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Re: Just dx with liver & lung tn sec...scared sh****ss

Thank you for your reply..life does feel pretty shit at the mo, I've had my first chem yesterday gemcarb and so far ok. I just hate that sitting around waiting for something to happen feeling!! Just finding it hard to get my head around the fact that I only finished chemo in July, it fills me with dread at how quickly it grew again and yet I didn't feel a thing. I had doxetaxal first time round and apart from the hair loss I managed without sickness, tiredness etc, so I'm hoping thiwine will be the same. Bc nurse seems to think carboplatin & gemzar is a walk in the park compared to doxetaxal .....well that's ok for her to say isnt it she's not the one being pumped full of the crap. I'm also waiting to see if I can have a biopsy to see if my receptors have changed, as if they have I will be able to have herceptin. Also waiting for brca gene testing, as apparently if I have the gene mutation that opens up more treatment options.

Re: Just dx with liver & lung tn sec...scared sh****ss

Hello Chatty Katty,
Think I can balance the bones stories... my bc diagnosis in Nov was only 2 days ahead of ct scan confirmation of secondaries to the liver (largest tumour size of tangerine) and lung.
I didn't have any surgery, the consultants recommended cracking on with chemo asap (against my preference). Scans after 4th round revealed all tumours have shrunk, the largest liver one by over 75%.
I'm on Docetaxol + Carboplatin + Hercepin (I'm lucky to be HER2 positive). I've kept 95% of the hair on my head by doing the ice cap treatment. It only has a 30-40% success rate, so if you go for it, need to be realistic, but seems you can improve chances by being very careful about how you treat your hair (I did cool wash every 2-3 days with sensitive scalp shampoo, no products or heat) and reduce discomfort by taking paracetamol half an hour before.
Please take heart, I thought I was a gonna when I got my diagnosis. It must be tough that the news has come just as you feel well, but it seems being well and strong at the start of the chemo makes a big difference. I'm well too, apart from the chemo effects. I felt bad after the 1st treatment (nausea and acid, which the onc then medicated me for, hormones and emotions after the 5th, which I've had to find other ways to handle).
There's a secondaries live chat at 8.30 on a Tues evening for an hour, the group have a range of types, including other liver and lung girls. Good luck.
Sarah.x
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Re: Just dx with liver & lung tn sec...scared sh****ss

Thank you all for your comments. Had my first gemcarb today, went in at 11am and didn't get out till4.30!! The actual chemo only took an hour, its all the other twaiting around they do. It all feels so surreal, I was only in that chemo ward last July, full of hope that I would smash this b***tards arse. Finding it hard reading a lot of the secondaries posts, especially when some of the bone ones bang on about how lucky they have it in their bones and atleast its notin their livers!! That makes me feel great.

Re: Just dx with liver & lung tn sec...scared sh****ss

Cyber hugs heading your way. I was diagnosed with seondaries in the bone...July 2012...at the same time as my primaries. Like you had a healthy life style...etc. Am treated at the Marsden (Sutton) have to say they have been amazing. Have just finished EC chemo and am stable...they have sorted out my treatment plan too. I took advantage of massages, acupuncture, counselling too...I had to get my head around things.
There are many ladies on here who can give you support and answer any questions. I can totally understand how you feel.
Be kind to yourself,
Mel
xxx

Re: Just dx with liver & lung tn sec...scared sh****ss

Chatty katty I know how devastating this dx can be...I was dx in May with exstensive bone mets and possible lung mets on day one and I only went to the doctor with back pain.Sorry can't help with the particular chemo you are being offered, although I have had chemo,radiotherapy and hormone therapy and am now on a chemo/hormone combo because I now have spread to my liver.Once you have come to terms with the dx I am sure that you will look at your family and find the strength to fight this god damb awful disease.Over the last 4 years the treatments have kept me stable and allowed me time to build memories and spend time with my family.I am hoping for many more years to see my tiny grandson grow and will try every treatment offered me to acheive it.You rave away at this disease but save some strength for your family.Be kind to yourself.

L xx

Re: Just dx with liver & lung tn sec...scared sh****ss

What can I say to help, Chatty Kathy? Words fail me. I cried when I read your post. This is s*!t for you. Absolutely horrendous news. I am so sorry. Nothing I can say can help I know. But I just wanted you to know that all of us on the forums, not matter what our diagnosis, know the pain and the agony and the anxiety you must be feeling and how scared you must be - not just for yourself, but for your children and your family. All I can do is send you a great big virtual hug. If I could take some of your pain I would. I know how I would be feeling major league pi""$d off too! Turning the anger to the son-of-a-bitch cancer is cliched I know but you have to figtht it - punch it on the blooming nose and say - "YOU are NOT having me. No way, not now, not ever!" I am so sorry. Hugs. love and light - that's all I can give you - I wish I could do more. Em x
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Re: Just dx with liver & lung tn sec...scared sh****ss

Hi Chatty Katty
Just caught your post before retiring to bed so thought I'd throw a few lines your way. How dreadful that you have to deal with all of this. I can absolutely understand your anger at having lived by the book yet 'still' get cancer. I'm sure the Docs etc are not unfamiliar with people who have the same anger at the unfairness of it all. Perhaps the woman stuffing her face with burgers whilst on 40 marlborough and downing stella has just been given a diagnosis that she'd rather not have and thinks 'what the hell.. I may as well smoke drink and eat burgers'.. Anyway, that doesn't help you and I'm not much help as I've not had chemo (this time round) but wanted to bump you up so that those who are having gemcarb can shoot in with answers for you. Thinking of you at what is a very difficult time for you
x
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Just dx with liver & lung tn sec...scared sh****ss

Well I had my results on tues and I'm in total shock, I've been told I have 2 areas on my liver largest 8.8cm!!! F***ing hell...small amount of both lungs...my onc said areas on liver are big and need to get n with chemo, but went to marsden and they said caught it early and not too big and I can basically pick my start date!!! A bit confused.
anyway I start chemo again on Monday, starting gemcarb...it's almost a year to the day that I started this bloodly horrific journey, I had just got off the ride and started to plan my life after bc.
Ive just come back from hols, where I've swam for miles, walked miles, abseiled, zip wired and actually felt normal..then bam come back to have an ultrasound and wollupe off we go again. It's just not bloody fair.
i saw the top man in the marsden and probably won't get invited back after my rant!
I basically went on about the professionals tell you not to bloody smoke, eat crap, be fat, be active, breast feed your kids etc and yet I still bloody got it, what about the woman sat stuffing her face with burgers, a bottle of Stella and 40 Marlborough a week..what about her...
ive got two wonderful beautiful girls 12 and 3...why don't I get to see them grow up..I had a fantastic childhood and wanted to give my kids the same experiences and yet this bloody disease is going to rob me of the right to be a mother!!
I can't seem to stop crying I don't know how I'm now supposed to get on with my life. Every time I look at my kids, husband, sister and parents it makes me cry cause I don't want to leave them cause I love them too much and I know how much its hurting them.
I've read the posts from other ladies with secondaries and tn and can't believe how positive they all are, when it feels like I am wobbling on the edge of hell.
is anyone else on gemcarb? What are se like do you lose your hair?