Stage 4

[Giblets9]

Hi, I'm 41 and was diagnosed with stage 4 lung cancer two weeks ago. I had a lung biopsy yesterday and start chemo next week. I made the mistake of looking at life expectancies on the Internet and made myself insane. Does anyone know of anyone who has lived with stage 4 for a semi long time. My mum says everyone is individual. I guess I just want someone to tell me there's hope and I'm not doomed.

[Hidden]

Hi Giblets9, I think most of us used Dr Google in the early stages of diagnosis but please try and stay clear of it, use the Roy Castle, Macmillan or Cancer.org.uk for information and advice. You can also go to Inspire in the USA which has many more subscribers.

Nearly all statistics are 5 years old and their are new treatments available now that can help a lot of cancer patients. Has your biopsy been checked for EGFR, ALK and all other specifics relating to your cancer as some therapies can target these and give a good response.

Listen to your mum, she is right in that we are all individual and therefore no one knows how we will respond to our treatment regimes. I'm sure some of the others on this site will tell you that they buck the statistics. As for myself this is the second time around for me and even though I was caught early the first time unfortunately I was diagnosed almost a year ago today with stage incurable and the median life expectancy of 12 months. I have chemo and and radiotherapy already and I am due to start another chemo regime tomorrow to alleviate symptoms and prolong life. So I consider myself ahead of the game.

As I have said before that it really hurts me when you young uns are diagnosed with this awful disease, I'm 64 and had and done plenty in my life but I'm still not ready to go. So hopefully you're young and fit enough to carry on fir a lot longer and who knows some new treatment that can help you may become available.

Stay as well as you can, drink plenty of water and eat as healthily as possible.

Rab

[Inula]

Giblet im sorry you're having to battle against this awful disease at such a young age. I hope you have a supportive network of family and friends. You will always get fantastic supprt here on the forums too so come back often to read helpful and inspirational postings.

Rabbie hits the nail on the head. AVOID Dr Google like the plague! That said - that's what I did but I accidentally came across details of prognosis (for my husband) when reading a report about new lung cancer treatments on a news site

Many of the statistics are out of date and even people with the same disease can react and progress very differently so listen to your mum - she's right. It's and very individual journey. I know it's very difficult (if not impossible) but try to stay positive. New treatments are being developed all the time.

Wishing you luck

Netty

[Hidden]

Hi my dad was diagnosed with stage 4 lung cancer 3 and a half years ago. I made the mistake of doing the same. He is currently having another session of chemo as evertime it has shrunk which is fantastic. He was 78 last week and has been so positive which I truly believe has stopped it growing. The original cancer stopped growing and a small new amount was spotted hence some more chemo. He's had very few side effects too.... When he's feeling down we don't let him and get him back on track. The consultant is positive and if this treatment doesn't respond he has other options. Keep healthy and fit as it helps with your treatment.

Wishing you all the best with your treatment .... Keep positive and determined to fight it and you will.

[jujuju]

I was diagnosed with early stage nsclc three years ago. Unfortunately it had spread to my lymph nodes and by august we knew I was stage 3 and by October 2014 I was stage IV and had been since april. It had spread to my bones. I am still going strong. Everyone is different and if you are lucky and your cancer responds well to treatment , you could go on for many years. The mutation testing that Rabbie mentions is great. If you are positive for EGFR or ALK a whole new door opens for targeted treatment. If you are in England then the Matrix trials are being rolled out nationwide, where your biopsy is tested for mutations and then you could get on a trial to treat your specific mutation. scienceblog.cancerresearchu... this is info on the matrix trial. Immunotherapy is just coming to the front and could give us years. Ask your oncologist about the Matrix trial.

Very best wishes

Julie

[E-Lynn]

I am in the US and was dx with Stage I cancer NSCLC that has recurred at least four times (not counting current spot being watched.) I had been in a clinical trial for another cancer, a form of leukemia called CLL at our NIH in Bethesda MD so got the best of care there for my LC. I have had four surgeries and the key to best treatment is having your genetic mutation status of the biopsied tissue analyzed. If you have the EGFR or ALK mutations, then there are targeted treatments for you. As in almost all cancer treatments, your best bet is to get into a clinical trial. The newest interesting drugs in the US are the immunotherapy drugs Keytruda (Pembrolizumab) and Opdivo (Nivolumab).

When looking for a trial, you want to know what flavor is lung cancer you have: small cell or non-small cell and if non-small cell then is it squamous cell or adenocarcinoma. Trials my stipulate which subtype they are looking at.

Wishing you all the best and hoping you find a very good treatment plan.

[frankiedarv]

My dad was diagnosed a short while ago, and like we all do i scanned google and then wish i hadnt, but we have both chosen to ignore the doom and gloom merchants no one can tell you how long you are going to live, so if you can focus on how you live not how long enjoy everything you can and as always Mums are right and things have changed for Cancer patients in leaps and bounds. If you were given a copy of the Roy castle lung cancer DVD watch it (I actually vetted my copy before i let my dad see it in case it was total doom and gloom) but it does give good information and it certainly gave us a better picture than what we were thinking.

All the best

lots of love

Francesxx

[heresdeb]

I was diagnosed Nov 2014 with stage 4 lung cancer which has spread to bones, liver and kidneys. I have had two lots of different chemo with the last finishing this week and two lots of radiotherapy for bone. I have bone injections every 4 weeks. Apart from the pain in the lung which they are going to give radiotherapy in the next 6weeks, I feel good. The tumours have shrunk and the consultant seems really pleased this time with the shrinkage. Unfortunately its usually 5 years given once diagnosed but there have been some that have gone over that. I have also said I am will to do any trials as what have I got to lose. I think also every time the chemo works you are offered it again but it depends on if you are strong enough to take it . My first lot was very strong and made me very ill but the shrinkage was not as great as this other lot which, I have hardly had any side affects from. If I had to keep having the first lot of chemo, I would probably say no to it but I don't know until I am offered. I also think it depends on your outlook on life. PPl say they cant believe how strong I am which I feel sometimes I am not but I don't keep thinking about what I have. I did look on the net as soon as I was diagnosed and this can hinder or help depends on how you digest the info. I got the impression from the nurse that was also in the room at the time I was told, I only had a matter of weeks because of her way of sympathising with the problem. Try not to second guess at things and ask your doctor when your not sure, even when you think they have already told you ask again.

All the best

[bobdionq]

You do not have an expiration date. Do you know what type of cancer? Small Cell or Non small Cell? I have small cell they just say limited or extensive. After my first round of chemo after 8 cycles I was NED aka bo evidence of disease.

But as it usually does it has recurred on my left kidney, liver and neck lymph nodes. The second line chemo is working. But I am having problems with my blood work showing certain things two low, got it down to platelets so they chemo today and will give me chemo and platelets next Thursday.

They gave me 10 months, it has been 15 and If they can keep my body able to handle treatments then I plan on making it at least another 6 months. But if not then prognosis is less than 2 months as fast as Extensive small cell lung cancer.

Ask then for valium or Xanax to help you when are freaking out. The only control you have over this is take good care of yourself and pray.

I will add you to my prayer list.

Bob Blais

[hilde]

Hi Giblet

Sorry to hear your news. Listen to your mom, the net is very misleading and everyone respondes differently to treatment. Rabbie post makes a lot of sense. You have youth on your side so will have more energy and determine to fight this, statistic figures for lung recovery are always low. so be positive thinking, eat all the right foods and try and keep yourself as fit as possible. They are always improving with treatments and yiu will be one of those

[Janey_H]

Hi Giblet - sorry to read your post and that you find yourself on this forum.

I was diagnosed with Stage IIIB, adenocarcinoma, non-small cell lung cancer in June 2014. I was 43 at the time and was told it was inoperable and incurable.

Like you, I went to the Internet but was luckily directed to Macmillan and cancer research sites.

Since diagnosis, I have had four rounds of chemo and thirty sessions of radiotherapy. After this I became eligible for surgery! I have had a lobectomy in June this year and have had two sets of clear scans since.... A position I never thought I could get to!

I know it has a high risk of recurrence so I keep a sense of reality - however, I post this in the hope that it gives you hope and that things can change from the original shock of diagnosis.

Wishing you all the best

Janey xx

[Giblets9 in reply to Janey_H]

Thanks Janey, I've been told I'm inoperable , I'm about to have my second treatment of chemo they haven't mentioned radiotherapy at all? It's good to know that it's possible to go from inoperable to operable. Fingers crossed x

[Janey_H in reply to Giblets9]

All the best to you. I hope your second round of chemo goes okay. Do you know how many cycles you are having? Are they scanning you after a few to see how you are responding? Maybe worth asking what the plan is for after chemotherapy and see if they are thinking of any radiotherapy.

Having said that it is sometimes hard to go too many jumps ahead as it may all depend on your response to the chemo.

Sending you lots of positive vibes though and keep asking questions and think positive!

Lots of love Janey x

[dscontroller]

I was diagnosed with lung cancer and bowel cancer, both at the same time and totally separate cancers just over 4 years ago. I really believed I was doomed at that time!

My left lung was completely removed and I've had over 50% of my bowel removed. I was nearly 72 years of age at that time. During that time I had a massive internal bleed and finished up with a stoma for 7 months before it was reversed. This followed some very intensive chemotherapy which the surgeon blamed for my internal bleed. The chemotherapy also gave me peripheral pneuropathy which has affected my walking ability to this day.

I'm 76 in a couple of weeks and I've remained very positive throughout.

Have belief in what the NHS can do for you. You must keep your hope and I'll try and pass my belief to you also.

Keep strong.

David Stringer