Time for my story.

[livvyloot]

Hi, I've been reading posts on here for a while now but as yet not told my story, so here goes.

I had a funny turn about 5 yrs ago and my doctor said it looks as though I've had a mild heart attack, but I moved soon after to a different area, it was not until last year that my partner said I've to see the doctor as I'm getting out of breath more and more when walking. I went to my new doctor, in July 16, who gave me an ECG which showed, after lots of tests, that I did in fact have a mild heart attack 5 yrs ago and a quarter of my heart was now dead, nothing can be done except take life long pills. This was dreadful in itself but then x-rays showed something small on the top of my left lung. I had a wedge section and biopsy in Jan 17. Then came the news that it was cancer which had spread to my chest lymph nodes and also my lower spine.

I have since had 6 rounds of chemotherapy which gave a result of 30% reduction all over which I thought was good so did not have to see the consultant for another 3 mths. Two months later I thought I'd put my back out and it was hard to bend, get out of bed or even walk but as we had a holiday booked in Warwick castle I went on it. Unfortunately if got worse so when I got back I called the emergency number only to be told come in for assessment, on doing so was promptly laid flat on my back for 2 days until they did tests. The result, cancer had progressed both in spine and lymph nodes, they gave me 5 rounds of radiotherapy to kill the pain, but before settling down made it really painful again. I have this week had my first session of immunotherapy, and was not at all good on the second day, but things have now settled down.

This is my second bout of cancer, 26 yrs ago I had breast cancer and with all the chemo and radiotherapy survived this long. The thing now is as this lung cancer is non-curable how long will I have.

Has anyone been on Keytruda? and how long ago and what is the outcome?

I do, like everyone, feel like I'm in a bubble and the world is going on around me - especially as my back is still painful and restricts me from doing much at all, even putting my socks on is now my partners job (hopefully not for too long now).

I do find it hard to talk to people, and some even seem to put their head in the sand and don't want to know, this is hard especially as it's my family.

Any update on Keytruda patients would be helpful and at least give me an insight of what's to come.

Thank you for reading my long post - just wanted to put it down somewhere.

Therese.

[Hidden]

Hi Therese, You too have had a difficult time ,unfortunately I know nothing bout the immunotherapy you are on but no doubt someone will on this site I hope it eases some of your problems soon .

Your are right at times I have felt caught In a bubble of negativity too when my outlook has looked completely bleak ,I try to pick myself up for my family its not fair that cancer has moved in with us .steroids do help this aspect I confess as the doses come down that changes a little .My GP asked me if I was depressed at one point to which my response was well having had 3 cancers one untreatable one you would be too. A pill can fix everything but they have side effects so best avoided I do have packet of this and that just in case but I don't take them would rather have a brandy and a paracetamol at least I know what that does to me .Maybe burying the head in the sand is just a coping mechanism a way of functioning .If I start to cry it isn't a sniffle more like a river it doesn't help me or those around me .

Good luck with your new treatment plan hopefully you will feel the benefits soon .Diane

[livvyloot in reply to Hidden]

Thank you Diane, I do try my best to keep my chin up and look on the positive things, but like you when crying it's not a sniffle anymore so I try not to impose myself on others. I so want to open a bottle of Southern Comfort (my tipple) but I'm on morphine and a couple of other drugs that say avoid alcohol so at the moment I'm not taking the chance, just hoping that by Christmas I'll be off the morphine as back pain is now beginning to reduce - no celebrating my birthday next week with a large one.

I have been following your posts as well, hope all goes well for you. Therese.

[JanetteR57]

Gosh, sounds as if you've had a very long and difficult experience and testament to your strength and courage that you're still fighting. Although many patients are living with non curable lung cancer, that doesn't mean non treatable. I've met several patients who were given just months to live but on clinical trials drugs at the time, lived several years and many are still living with it being 'managed' almost like a long term condition. In the meantime, more treatments have and are being developed all the time so other options become available if the body becomes immune to the treatment in question. We all react differently to our diagnosis and sometimes I look back to my diagnosis and wonder how I got through it but I did and others do too. I also look at my life before my diagnosis and how different it is now - I have learnt to appreciate little things that I took for granted, no longer get so frustrated about unimportant matters (or try not to) and try to value people and relationships more. However not everyone knows how to deal with the news or updates and whereas for some, talking all about their symptoms, tests and experiences is very important, for others remaining private and discussing this elsewhere can help maintain relationships with family as just that, not medical adviser. This and other forums and telephone helplines, counselling or talking to cancer nurses can help us appreciate whether what we're experiencing is a natural reaction to the situation rather than depression, denial or any other label others choose to put on it. Personally I try to avoid any unnecessary medication so always look for other ways to avoid a sinking mood - what do you like? recognising your limited mobility, does watching a film or listening to music, reading or crafting take you to a different place in your head? Wishing you well as you continue your treatment…. x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Therese

Welcome to the forum and thank you for sharing your story, so sorry to hear about your journey with cancer. If you are still having pain in your back let your pain management team know - nurse specialist/GP/Oncologist, it may be your pain control needs to be assessed.

I have placed a link below on some information on Keytruda (from Cancer Research UK)

cancerresearchuk.org/about-...

Hopefully someone may respond to you on the forum who is on Keytruda to give you some more personal experience on this.

Maggies Centres are a great resource for practical, emotional and financial support, their number is 0300 123 1801, it is very informal and are usually attached to cancer centres in Hospitals.

It must be very difficult for you not having the emotional support that you need or have an outlet for all the emotions you must be feeling. Perhaps consider discussing with your GP or nurse that you do find it difficult to talk about it, and they may provide you with local services that could assist, e.g a one on one counselor as a place where you feel you can safely express yourself. You will know yourself which is the right approach for you.

The forum is a great place to find support and encouragement.

There are lots of helpline services available; we have a free nurse led helpline number if you wish to discuss anything on 0800 358 7200

Macmillan nurse helpline number - 0808 808 0000

Marie curie nurse helpline number - 0800 090 2309

Cancer Research UK - 0300 123 4452

Wish you all the very best

The Roy Castle Support Team

[livvyloot]

Thank you for your suggestions, especially to find someone who is there to listen to me and how I'm feeling. I do have a new partner, I was widowed back in 2003 but 7 years ago I met a lovely man and we moved in together 5 yrs ago but unfortunately it was 35 miles about from my family and friends. He is a lovely man and there 24/7 but there are times I need to talk without him around but this is hard as we have both retired early (he had a stroke 4 yrs ago). I have found out that Poole hospital have started a once a month get together of people with the same condition as mine, unfortunately the first two were when we had managed to go on holiday, hopefully the next one will be ok to go to as I'm not feeling good enough to book away trips.

I have been feeling really sick and tired this last week, which I'm hoping is just a side affect of the Keytruda and will pass. I do watch a lot of TV but am now getting fed up with it so will have to find something else to fill my time whilst I'm unable to other things.

Therese.