New to this, but would really like some help x

I've not left a blog before or a question. I have recently been diagnosed with Stage 4 lung cancer, at 44 and never smoked I am obviously very scared. I have been told there is no cure and no chance of an operation. I have completed 6 sessions of chemopherapy (pemetrexed, avastin and carboplatin) . I thought that would be it, however, have been told in order to prolong my life I need to remain on chemo indefinitely (avastin and pemetrexed). I started this on Tuesday and thought the side effects would be less as I was stopping the carboplatin, but they are not. Does anyone know if this will improve over time and is it OK to remain on chemo long term. My oncologist is lovely but I am struggling today and feeling very emotional and afraid.

Any help or advice greatly appreciated x

[Billculbard]

Hi Lulla

I too, had inoperable lung cancer, and was told my my specialist that it couldn't be cured, but that she would try to prolong my life. That was in 2000. Obviously everyone's case is different, as are the methods of treating cancer now.

The best person to give you sound advice for your own circumstances, is the Cancer Nurse Specialist where you are being treated. They are the experts. The drugs used on me were totally different from yours, and I'm afraid I can't give you any advice there.

Apart from the CNS., I suggest you keep in contact with this site, as there are a lot of folk available to give support and different kinds of advice, as no-one has exactly the same symptoms.

Best wishes, Bill

[Andy12 in reply to Billculbard]

Hi Bill,

If you don't mind, could you please share with us the care program that you have been on?

Regards

Andy

[Billculbard in reply to Andy12]

Hi Andy

I haven't been on any care programme as such. Luckily, things have changed much over the years, probably due to RCLCF et al fighting in our corner.

My chemo and radiotherapy lasted from April to the end of September 2000. Following this, I returned to work in December (obviously didn't work too hard). I had three-monthly then six-monthly visits to my consultant, followed by one annual visit. At this one, I was told I my tumour was gone!!

Like most other folk though, I certainly get concerned if a I have a pain in the wrong place or my breathlessness gets more pronounced. I suppose it's generally caused by age, as much as naything else.

I had no further cancer related visits to the doctor, although I know that I can contact them at any time. My only health concern has been the one I've had since December - a cough which is taking its time to clear. I've had this checked out and I'm assured it's not cancer related.

Clearly, the people who have or are going through cancer treatment recently or currently, are the ones with better knowledge of care packages and treatment. Mine are becoming antique now - Thank God!

Best wishes, Bill

[Andy12 in reply to Billculbard]

Hi Bill,

Thank you for being so open with us, it's great to hear that you are coping so well after the initial treatment.

I hope this continues for many years to come.

kind regards

Andy

[Billculbard in reply to Andy12]

Thanks Andy. Bill

[Hidden]

Hi Lulla,

sorry to hear about your diagnosis, I was also doagnosed with Stage 4 aged 49. That was now 15 months ago. I tested positive for the mutation EGFR so my chemo is targeted chemo in tablet form. It does have less side effects, the ones I had pretty much stopped after 6 months. I am assuming you tested negative as from what I know everyone diagnosed is tested for the common mutaions (EGFR ALK) as standard now in the UK.

In answer to your question, every medical decision is based on benefit V risk. You will continue to receive chemo whilst the benefit to you is greater than the risk of either the chemo (usually its side effects) or what will happen if they stop it. I hope that makes sence. Side effects of any drug vary from person to person.

As Bill said speak to your Lung cancer nurse but you can always ask advice at Cancer GRACE, its a forum headed by lung oncologists. Here's the link: cancergrace.org/general/

Keep in touch though

best wishes

lyn x

[geoffh]

A good way of dealing with this could be to do more research..join forums like this, buy advice books (cheap on ebay, amazon) and look at what hospitals offer different treatments. Your local NHS will not want to pay for you to go elsewhere, but you are entitled to go where you want for better treatment. Many "inoperable" cancers can be treated with radiotherapy, tomotherapy, linear accelerator machines. However, YOU have to find them, your local hospital won't help you in this.

You must get a second opinion..either by waiting through the NHS or pay for a private second oppinion, ( about £150 - £250). Find the very best person and pay to see them, (I went to Paul Burt at Christie's in Manchester). For £250 we got a cure plan devised and a letter to our local radiographer reccomending treatment, which was 90% effective). Don't give up and turn your fear into positive motivation.

God bless you in your fight ahead, but remember - it is a fight!

[AlliTB]

I have no advice to offer other than stay in touch & listen to the guys above! I wish you well & hope you find this forum helpful during your difficult time. Never give up, there are many positive stories out there. Good luck! X