Incurable but treatable stage 4

[tonyp62]

My girlfriend has just been told she has stage 4 nsclc, a lesion about 9cm long and also fluid around the heart. We are obviously shocked about this, as just a few weeks ago the X-ray showed a shadow on one lung, and since then the news has just got worse and worse. The nurse specialist said it was incurable but treatable, but treatment couldn't start until some infections were cleared up. It is a big worry especially hearing about the fluid around heart. I wonder if others have coped with a similar situation and have any advice or observations.

[Brogan-12]

Hi my boyfreind. Was diagnosed. In sept 2016 with sclc it wad a shock to us had he only went for a chest xray which showed. A shadow. On his lung it then wrnt from baf to worse it wadnt curable. But chemo could extend his life he had 6months of chemo. Which wad a waist of time. This disease. Took erveything from himmind body and soul sclc wad vety aggresive althow. We wernt. Told this and the treetment hasnt changed in 15 yeats or more but eith nsclc there is lits of treetment to be had. Ftom target therapy. To immune. Therrpy so people with this type seem to have a much bettet chance. Of living with this dreadfull disease. So with hope and prays your girlfriend. Could have the best treetment available sadly. My boyfreind. Passed away at the end of march 2017. But good luck to you both my thoughts and prays. Are with all suffering. God bless xx

[tonyp62 in reply to Brogan-12]

Thank you for your kind reply. I am so sorry for your loss and I hope you are managing to cope. At the moment the problem is my girlfriend is too weak to start any treatment so the hospital are trying to stabilise her, we can only take it one day at a time. I just hope they can drain the fluid from around her heart at some point. God bless x

[Hillyblue]

Dear Tony

I was diagnosed in March 2015 with NSCLC STAGE 4.

I have had 14 "rounds of chemo and other treatments.

Don't give up as there are loads of new treatments out there but it's a lot to take on at first.

What you need to know is the type of lung cancer - mine is adenocarcinoma - then your girlfriend should asked to be tested for mutations. The ones routinely tested by the NHS are for EGFR and ALk.

This can be done while she is recovering so that you have all the info going forward.

There are several targeted oral treatments (tki's) which may be suitable.

I wasn't suitable so had strong chemo as first line treatment instead which was very successful anyway.

Good luck but ask those questions and get all the information so that you can make inormed decisions

Hilary

[tonyp62 in reply to Hillyblue]

Thanks for your reply Hilary. She has squamous cell carcinoma. They are testing cells to see if she is compatible for immunotherapy. Hopefully we will know within two weeks, and she will be stronger to take the necessary chemo. It is good to hear that your chemo was successful and hope it continues so. Tony

[pollyalison]

Hi Tony,

I was diagnosed nsclc adenocarcinoma in September 2015 and have been on targeted treatment since. Firstly EGFR positive, took gifitinib then when that stopped working I was T790M compatible and am now on Tagrisso which should work for around 12 months then something else will have to be thought of. There have, and continue to be great strides forward in treatment for this disease so hang on in there, something will be around the corner. Much love and strength to you both.

Alison x

[tonyp62 in reply to pollyalison]

Hi Alison, thank you for your reply. I am pleased to hear that you have been on several treatments that have worked for you and very much hope that continues. Thanks for your kind thoughts. Tony

[suerao]

Hi Tony,

That's so sad to hear. How old is ur gf. I lost my dad to lung cancer this January. I just want to tell you that you find out all the treatments available and do what is good for her. Be strong. Don't give up. Prayers for your family.

Sue

[tonyp62 in reply to suerao]

Hi Sue, my girlfriend is 54. Thank you for your kind thoughts and prayers. I am sorry for the loss of your dad. I will certainly check up on the available treatments and hope she may qualify for immunotherapy if possible. Tony

[bevbettison in reply to tonyp62]

Hi I am 58 so very much of an age with your girlfriend. I feel for you both. I have has a operation to try and remove a lung and some ribs and a round of chemo which took all day every time. unfortunately all treatment was unsuccessful .I was told 2 years ago that a year was probably all I had, 2 years later I am still here. Unfortunatly it has now spread to my brain , I have 2 growths there, they have just given me a course of radiotherapy in order that I may try immunotherapy. I am very lucky with my consultant who is willing to try different treatments.Your girlfriend will probably get fed up with being pulled and proded about but hang on in there,and I know how difficult it is for you as well,taking one day at a time is really the only way to go, I hope that she is able to go on with any treatment and it helps her. My thoughts are with you both. God Bless

[tonyp62 in reply to bevbettison]

Hi Bev, thanks very much for your reply. You have certainly been through a horrible time and I hope you will be able to have immunotherapy soon. My girlfriend can't have surgery because of where the tumour is. She just wants to get on with chemo because of the thought of the cancer growing and spreading, but they want to wait a bit longer for test results to see if she can have immunotherapy. I feel the immediate worry is the fluid around the heart and want to speak to the doctors about this. Thanks for your kind thoughts which I reciprocate. God Bless

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Tony

Welcome to the forum where as you can see from the replies there is a lot of support and encouragement on the forum.

So sorry to hear about your girlfriend's diagnosis, such a difficult time for you all. As you have mentioned earlier, the priority is treating the infection and reducing the fluid around the heart if possible, which can be done sometime by draining the fluid, but as with everything depends on a number of factors.

Thankfully there have been progress made in the treatment of some lung cancers, Immunotherapy being one of them, which is dependent on certain cell mutations of the cancer cell (which is known from biopsy) I have placed a link below which provides some information on targeted therapies/immunotherapy from cancer research UK

cancerresearchuk.org/about-...

These therapies do not cure but can sometiimes shrink or stop the tumour, in the hope to provide a better quality and length of life.

The lung cancer specialist nurses are a great source of information, advice and local support available.

We have lots of information on our website roycastle.org or if you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best

Kind regards

The Roy Castle Support Team