Hi, im Eva 45. Diagnosed with advanced lung cancer on 31st October 2014.

[EvaSamantha]

Not really sure what else to say .. still trying to get my head around things and someone said I should join a forum.

Started chemo last thursday for first time.

Feel fine up to now but we shall see ..

[wendiau]

hey Eva.... hope you are going as well as can be expected....where are you ..Im in Australia...

Everyone deals with it differently... and your way won't be wrong... if you want to rant scream.. cry.. anything thats what make these groups work....I have 1 lung due to the beast... and hear if you want to talk xo

[EvaSamantha in reply to wendiau]

Hi .. im in Liverpool, Merseyside.

[Hidden]

Hi Eva, so sorry that you have had to join this forum because of your diagnosis. You are the start of journey that will probably have a few twists and turns along the way. What stage were you told , stage IV ? Is the cancer metastatic? What's your chemo regime, Cistaplatin/Navorolbene ? If you let us know some more information then there are people on this site who may have had similar experiences and can give you some advice and support.

Good Luck

Rab

[EvaSamantha in reply to Hidden]

I asked what stage she just said advanced.

yes started chemo last week.

cant say anymore it literally freaks me out in case what I hear isnt good.

ridiculous really.

[EvaSamantha in reply to EvaSamantha]

I also know im getting the toughest chemo they can give.

im young and fit they said.

[Hidden in reply to EvaSamantha]

Please find out what you can at your next chemo visit and we will all try and help you with advice where we can. Which hospital are you attending? Lorraine or Beth may be able to point you towards a local support group.

Best Wishes

Rab

[EvaSamantha in reply to Hidden]

Yes Rab .. it seems finding out information from clatterbridge is like trying to find the covernent.

Ive tried and tried. I cant even manage to get my next chemo appointmnent from them anything more taxing would be nigh on impossible.

[Hidden in reply to EvaSamantha]

Eva, you should not be getting yourself so stressed out, it is not going to help your treatment and recovery. Is there some family member or friend that can help you to get all the info and advice that you should be receiving. Or can you get in touch with Macmillan nurses to also help. Please don't think you have to go through this on your own.

Rab

[Sue_by_the_sea]

Hello Eva, I recognise the sense of unreality you are feeling. It is very hard for the diagnosis to seem real to start with. I'm in a similar boat to you: advanced lung cancer diagnosed recently and started my first chemo last Tues. I joined the forum a couple of weeks ago, but didn't post anything - I was probably avoiding facing up to the truth! If you want any help or a chat about anything or just to grumble a bit about side effects to someone other than family, do contact me - hopefully we can support each other on this difficult journey.

Sue

[EvaSamantha in reply to Sue_by_the_sea]

Thank you Sue .. started mine last thursday so we seem to be in abt same place as far as shock is concerned. I was onky diagnosed 4 days before chemo and have a husky voice thats it.

so im in proper shock. Lol

[Sue_by_the_sea in reply to EvaSamantha]

Hi Eva,

(by the way, if this post comes up twice it's because my laptop went into melt down just before I sent the first reply, so I don't think I actually managed to post it, so am typing it again, but who knows with technology!)

4 days is super quick between diagnosis and chemo, which in may ways is a good thing as it means the cancer's being targeted with treatment without delay, on the other hand it gives you no time at all to come to terms with it or even read up a bit about it.

Hopefully your consultant/lung cancer nurse has already given you lots of the Roy Castle lung cancer leaflets (see Lorraine's post) which are very helpful - informative and simple for us laypeople but not patronising?

I had a few weeks between diagnosis and 1st chemo as I was waiting for results from tests for mutations, which would have meant different treatment, but unfortunately I turned out not to have any, so am just on the bog-standard, full-strength chemo. It's funny how the only upside to this whole thing is that doctors start to call us 'young and fit' again - I'm a bit older than you (early fifties), so it's been a while since anyone called me young before the diagnosis!!

How's things going since the chemo? Hopefully you've still not got too many side effects - or have more kicked in since you last posted? I've mainly just had all-pervasive nausea like really bad morning sickness, but fortunately that has passed now, so here's hoping you're also feeling generally good at the moment.

All the best,

Sue

[Hidden in reply to Sue_by_the_sea]

Sue/Eva make sure that you take any anti sickness meds before you start to feel sick. I made the same mistake and waited until I felt nauseous before taking them.

Best Wishes

Rab

[Sue_by_the_sea in reply to Hidden]

Thanks, Rabbie, very sound advice - I'll get it right next time hopefully.

Sue

[EvaSamantha in reply to Hidden]

Oh thanks Rab thats good to know. What are the best one do you know. Mine dont seems to do much at all.

[EvaSamantha in reply to Sue_by_the_sea]

Hi sue .. sorry for the late reply.

Had second chemo on thursday morning. Two hours later vomitting that never stopped until dr. Brought some tablets round. Couldnt even keep the anti sickness down. Gave me ones to put under my lip.

Last two days terrible nauseau and tiredness. Woke up this morning feeling less sick but still drained.

Having chemo at clatterbridge and its the worst hpspital i have ever been to. Stresses me out utterly. Told them im not coming back.

[Sue_by_the_sea in reply to EvaSamantha]

Sorry for not replying yesterday - I just didn't remember to check the blog. So sorry to hear about your sickness, it must be horrible. Did they not give you anti-sickness tablets to take for the first days after the chemo, cos I'm sure they're meant to. You also asked for names of good ones - I can only tell you what I was given which were Ondemet, which I was told are quite strong, but that there are stronger ones you can ask for if you need them.

Re support, which you feel your hospital is not providing - have they put you in touch with your area's lung cancer nurse? Our area lc nurse has been really helpful about practical matters like sickness, so if you've got one I would ring her. Or badger your consultant 's secretary until he/she finally puts you through - you are entitled to speak to your consultant personally if you're worried / unclear about your treatment.

If you would just like someone to actually chat to about it all, I'd be happy to give you my phone number if you email me at [e-mail]

Kindest thoughts,

Sue

[EvaSamantha in reply to Sue_by_the_sea]

Thank you Sue thats very kind x

[EvaSamantha in reply to Sue_by_the_sea]

To be honest not much info. I feel as though they dropped a bomb on me and walked away. Dont feel very supported at all. Still dont even know info on another treatment Im having that requires injections. Just cant get any answers and if I do none of them are the same.

[dewbery]

Hi I know what you mean I was first diagnosed in 2010 lung cancer but now is clear do not give up hope fight it I was in my 30 then I got mine it was a shock to me never thought I would get it

[LorraineD Partner Roy Castle]

Hello Eva

Welcome to the forum. It is one of these clubs most people would rather not be part of but once you've joined there is a lot to be gained from other members.

I would imagine you are still trying to make sense of what has happened to you. Do share as much as is right for you and I know there will be good advice from Wendi, Rabbie and many others.

It might be useful to know (and you to Sue - nice to hear from you) that we have a pack called "Lung Cancer, Answering Your Questions". You can have a look at it on our website roycastle.org or by calling our Freephone helpline on 0333 323 7200 option 2.

Hope you continue to manage the chemo, it can be a tough treatment for some people but hopefully will make a difference to how you feel and have an impact on your tumour.

take care and let us know if we can help in anyway

best wishes

Lorraine

on behalf of the Information & Support team

[EvaSamantha]

Thanks to everyone who took the time to reply i appreciate it.

since diagnosis I feel like my feet havent touched the ground, so its nice to get a bit of time to just see whats going on in this world.

and it does feel like a very strange world ive walked into.

[EvaSamantha]

One question I did want to ask is how sick do u have to be to get oxygen?

I asked for some but was told im not sick enough. Yet,

[Hidden]

Hi , as some of us have experienced this journey , people can offer good advice and support or point you in the right direction for professional queries. I remember in Feb 2014 , being diagnosed , and it is normal to experience lots of different emotions and a sense of entering into unknown territory on treatment. The treatment has it's up's and down's , but is doable. I have finished my chemo and radiotherapy, and like you , hit with high doses due to my age and fitness level. Spent 12 months in the gym , no symptoms before being diagnosed.

Regarding oxygen , I am not sure at what point oxygen is allocated. It would depend on what level of lung function a person has , how difficult your breathing is , and impact on daily life. I would discuss any breathing problems with the nurse specialist or oncologist .

take care and best wishes

[carolannmarie]

Hi Eva, I'm Carol from Birmingham. Was diagnosed April 2013 so further down the road than you but feeling good right now. Had op to remove tumour and part of lung followed by intense chemo. No two journeys are the same but I'm here if you need a chat/scream/cry. Good Luck xx

[pea-green-boat]

Hi Eva, Welcome to this world. My husband has just had 4th cycle of chemo (cisplatin and permexetred) on Friday. Re sickness pills we had quite a turbulent time previously so our experience might help you for the next round. Domperidone worked for him in cycle 1 & 2, but only if he took them the evening of chemo day and the moment he woke up - before getting out of bed. Don't wait to feel sick. Domperidone did nothing helpful on cycle 3 and he had a terrible few days of vomiting and retching. He tried ondansatron and that came back up too. Eventually got it under control with a combination of ondansatron and metroclopamide (??sp) but it was very nervewracking as he has lots of pills he has to take every day so couldn't afford to lose them being sick. So when we were getting ready for the 4th chemo I was telling anyone who would listen how hard number 3 had been. They have us a different anti-emetic (anti-sickness) called Aprepitant. I was skeptical but so far so good. Everyone is different and chemo regimes are different too. The thing that we learnt the hard way is that there are always alternative drugs and combinations of drugs. We just assumed that Domperidone was the only option. Make sure you tell them what's happening with you ( look for anyone who seems like they could sort things out for you - I talk to Macmillan Nurse, Chemo nurses, Lung CNS, Oncology hotline, Macmillan phone line, Consultant's secretary - basically whoever I can get hold of in a hurry - they don't all say the same things unfortunately so it is tiring and confusing) . Their aim should be to stop you being sick or in discomfort - there's a lot to endure already - without what 'could be' unnecessary side effects.

I really wish you the best of luck and for some kind of fairy godmother in your hospital. Failing that, have you got a rottweiler relative who can shake things up a bit? We had a battle at the beginning too, and it took some time to work out how the hospital admin/communication (non-communication) worked and who the useful people to talk to were. We're getting there now, but still feel a bit battered at times, and I'm not the patient!

All the best

Kx

[EvaSamantha in reply to pea-green-boat]

Thank you for that info it helps to know all this confusion seems to be the norm.

i am into my 3rd week of chemo (should be this thursday) but consultant has told me (via a key worker) that they are changing my chemo. Was told i needed to have a kidney test done before i could have this new chemo. Waiting a week for that appointment but it didnt materialise. So i chased up key worker again who now tells me i DONT have to have kidney test.

So presumed I would be in for chemo on thursday, but, no. It seems I can miss a week. Instead I have a metting with my consultant on the friday to discuss my new chemo.

considering my cancer is at an advanced stage, and my chemo had to be started 4 days after diagnosis, they are being very lax with their time schedule now.

utterly confused and bewildered by it all.

Has anyone else had their treatment changed two weeks in? Or been told missing a session is ok?

[EvaSamantha in reply to pea-green-boat]

Thank you for that info it helps to know all this confusion seems to be the norm.

i am into my 3rd week of chemo (should be this thursday) but consultant has told me (via a key worker) that they are changing my chemo. Was told i needed to have a kidney test done before i could have this new chemo. Waiting a week for that appointment but it didnt materialise. So i chased up key worker again who now tells me i DONT have to have kidney test.

So presumed I would be in for chemo on thursday, but, no. It seems I can miss a week. Instead I have a metting with my consultant on the friday to discuss my new chemo.

considering my cancer is at an advanced stage, and my chemo had to be started 4 days after diagnosis, they are being very lax with their time schedule now.

utterly confused and bewildered by it all.

Has anyone else had their treatment changed two weeks in? Or been told missing a session is ok?

[EvaSamantha in reply to pea-green-boat]

Thank you for that info it helps to know all this confusion seems to be the norm.

i am into my 3rd week of chemo (should be this thursday) but consultant has told me (via a key worker) that they are changing my chemo. Was told i needed to have a kidney test done before i could have this new chemo. Waiting a week for that appointment but it didnt materialise. So i chased up key worker again who now tells me i DONT have to have kidney test.

So presumed I would be in for chemo on thursday, but, no. It seems I can miss a week. Instead I have a metting with my consultant on the friday to discuss my new chemo.

considering my cancer is at an advanced stage, and my chemo had to be started 4 days after diagnosis, they are being very lax with their time schedule now.

utterly confused and bewildered by it all.

Has anyone else had their treatment changed two weeks in? Or been told missing a session is ok?

[EvaSamantha]

Oops THREE times!

[Hidden]

Hi there,

Ask to be put in touch with the lung Cancer nurse specialist. S/he will help you to navigate the difficult parts of the journey, and will be able to give you useful advice and support whenever you need it. If you have difficulty finding your nurse, give me a call on 0333 323 7200 extension 205 and I'll be able to help you via our nurse database.

Best wishes,

Beth on behalf of information and support.

[EvaSamantha in reply to Hidden]

Ive been given the info ive got FROM the lung cancer nurse specialist, but when I enquire abt anything relating to the info, im told thats all the info they have, and to speak to my oncologist. Ive never even met my oncologist.

I feel utterly alone.

[Hidden]

Hi there,

You can make an appointment to speak to your oncologist via his secretary. Its important that you are involved in all aspects of your care and treatment.

Best wishes,

Beth, on behalf of information and support.