Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

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nel107
Posted by

since my diagnosis last January 2019 when they felt they could cure my adeno/Squamish cell nsclc I had radical radiotherapy alongside just one cycle of chemo as although they planned to do two cycles, there was just too much toxicity, however the radiotherapy went well. I lost a lot of weight but truthfully a lot because I went on some crazy cancer diets. 

I had two three month follow up scans when it was felt I’d had a good response to treatment and I began to feel better and by the summer was taking some exercise again and feeling well. 

We booked a week away in Rhodes and during that week I began to feel quite unwell. I had a cough and night sweats and by the time I got home I felt pretty awful and very tired.

it was believed it was infection and I had three weeks of antibiotics which did very little.

i was then sent back from Royal Marsden to lung specialist at East Surrey hospital who looking at X-ray felt I had a good response to treatment but did say there was a lot going on in my lung. He felt I was well enough to take my holiday in Antigua but sadly the following week the pain got worse and finally I was advised not to travel long haul. When the lung specialist returned from holiday he decided that since symptoms had changed I should return to the oncologist at the Royal Marsden. They did a new CT scan and then it was discovered that all the inflammation was actually masking the real problem which is that my tumour has leaked into the pleura making it now an incurable situation. Such a shock! Don’t get me wrong, I was always aware that cancer can recur however just wasn’t expecting it at that moment.

i now have appointment with the medical team to discuss the possibility of immunotherapy.

cmtd
Posted by

Hi nel107 - so sorry to hear your news, I was also diagnosed January 2019 nsclc tumour in the top rh lobe - I had it removed in the February and then chemo for 4 months they told me surgery was hopefully curative. However it had spread to a lymph node and I had abnormal cells showing on the bronchi. I have just had PDT treatment to laser off the cells and wont know until April if its worked.

As you quite rightly say we just dont know with cancer!

Best wishes for your meeting with the medical team - some fantastic results with this immunotherapy. 

Take care xx

nel107
Posted by

Thank you so much and hope your mess in April is good xx

Ginajsy
Posted by

Hi Nel

It is good to hear from you, however not with this news 

I hope you have your appointment for the discussion on immunotherapy by now. Mines just started last week but so far so good. Many swear by it here, so hoping you will feel some reassurance by reading their stories.

It is horrible news to digest and will take sometime to do so. Go gently with yourself.

Gina

"There are no perfect people, only perfect intentions" - Robin Hood Prince Of Thieves

"Once more into the fray. Into the last good fight I'll ever know. Live and die on this day. Live and die on this day" - The Grey

"Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great." - Mark Twain

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
nel107
Posted by

Hello Gina

truly you are quite an inspiration. After all you’ve been through you keep upbeat and helpful to everyone. Makes me feel guilty that this latest bad news has thrown me so badly. As I’ve taken many supplements and diet changes and all sorts to try to help, yet still the disease has progressed and the curative option with radical radiotherapy has not worked neither. It’s so hard not to wonder if anything will work. I was able to stay very positive up until this latest bad news. I will find out on Tuesday if they think I’m a candidate for immuno then of course can my body take it and respond. So many ifs and buts and it’s how it affects my three girls that is most hard.

i think also now that I’m in pain as they think the cancer is pressing on nerves on my ribs. I do have liquid morphing and pregavalin for pain relief but don’t sleep too well as pain worse at night and hard to sleep in lying position. Now that I have pain I guess I seem more unwell which affects those around you more.

sorry I’m sounding sorry for myself but sometimes you just need to speak it out and not many can understand. After your experiences maybe few more than you.

i so hope for great results for you from the immuno. Trouble is, every positive you read there is a negative and just tonight I read something on immuno that wasn’t that encouraging. 

Right, I need to get my head sorted ! Thank you Gina for listening. 

Xx

nel107
Posted by

Hi Gina

just read a reply I sent saying something about mess in April? I really need to read what I type as I make so many typos, especially now whilst my head is all over the place xx

nel107
Posted by

Hi Gina

just read a reply I sent saying something about mess in April? I really need to read what I type as I make so many typos, especially now whilst my head is all over the place xx

nel107
Posted by

Hi - I’m sorry that was a typo of which I make too many, especially currently with my head all over the place.

of course I meant to say hope your results in April are good xx

Ginajsy
Posted by

Hey Nel

No need to apologise for typos, we all make them. After my craniotomies a member gently told me I was speaking a different language. She knew me well and knew what I was trying to say and translated it for me.... at the time I thought it made perfect sense.... then I read it back and thought gosh, I see what you mean! It really was a complete different language.

I still make quite a few, though it is getting better. One of my tumours was pressing on my speech and language part of my brain. So I struggle with words that sound the same but are spelt differently, quite often. I also randomly struggle with linking words, as in name all the vegetables beginning a certain letter.... not sure why you ever really need it in real life, but it was one of the tests they asked me to do by the occupational therapists at the neuro hospital. 

There is, if you look below your post a more button, where you can select edit (or delete)  if you really want to change it, (I regularly change mine as I notice them after I have posted). Sometimes the site can be glitchy though and the option to edit won't be there mind.

Please don't apologise for feeling down also, we have all hit those glum corners, including me. I properly freaked out at the neuro hospital after surgery. I had always done treatment by myself and I phoned my brother and sister begging for them to come over as I was so lost and alone. I had only been told I was incurable two weeks before the operation and it wasn't fun in recovery (at least two people and I think more.. maybe an accident happened) died around me in recovery... some stuff I posted, some I didn't... perhaps I should have been more open about it to show to everyone that we all are vulnerable at times.... so I am definitely not always upbeat I promise. Sometimes I despair and cry too. 

A new treatment is hard to do, as I wonder if immunotherapy will work for me or not. So, what I am trying to say here is, how you are feeling is completely natural and normal and don't be hard on yourself for feeling that way. You are doing the best thing by letting it out and talking it through.

I am not sure if I mentioned, I found hot water bottles (be careful to protect your skin) or heated wheat bags, or a heat pad the best thing for pain relief. To sleep I have a V or maternity pillow which helped support my shoulder and this has helped a lot. Maybe try those.

I can imagine with children it must be even harder, sorry I am not a Mum, so not the best to help or advise with that. Maybe call the phone line tomorrow 0808 808 00 00 for their input, I am sure they will be able to help.

I do know what you mean, it can be scary looking into things, but you could try rephrasing it from 'for every positive there is a negative' to 'for every negative, there is a positive'

Keep talking to us and good luck for Tuesday's meeting. They usually have some tricks up their sleeves to give us some hope and treatment.

Gina

"There are no perfect people, only perfect intentions" - Robin Hood Prince Of Thieves

"Once more into the fray. Into the last good fight I'll ever know. Live and die on this day. Live and die on this day" - The Grey

"Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great." - Mark Twain

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
nel107
Posted by

Hi Gina

thank you. As you see, I am up late as struggling as usual to sleep. Find sitting up in my chair best way but tonight not so good.

hopefully soon. Have just taken more pain killer