My first post, Lung cancer spread, gi... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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My first post, Lung cancer spread, given ave of a year to live, and now cancer is inactive, just over six months later, believe u can win!

rottenrunner
rottenrunner

Hi everyone, I had difficulty breathing in September 2018 and went to A/E, I was given an xray and they found a blood clot on each lung, they kept me in and gave me a CT scan, which they discovered a nasty looking lump on my right lung. They did a biopsy, which turned out to be cancer. They told me they couldn't cure it, but it could be treated, managed and I could live with it. After a PET scan and a bone scan, this changed to it has spread further than they thought, and it would kill me in the end, I was told I had an average of a year left. I felt too well to accept this diagnosis, and smiled at my oncologist, yeah whatever. It took a while to persuade my wife to my way of thinking, but we got there. I believed 100% I would beat this right from the start, whatever it was. I had six lots of chemo over four months, I had carboplaiten and pemexetred, it always felt like a five day hangover afterwards. I went vegan upon my original diagnosis, and have been taking cbd oil, twice a day. My latest scan in March 2019 showed the cancer to be inactive, so no more chemo has been booked in, not until, and if it becomes active again, my next scan is in June. I believe this will be more good news in my battle. But I'm ready and prepared for anything. I'm not there yet, but the prognosis is alot better than it was in October. I feel good and did plenty of walking through my rounds of chemo. I've started swimming again. I did try and get insurance for a holiday abroad, but the only quote we got was for over £1000, so we're going to the Isle of Wight next week, and really looking forward to it. Thanks for reading and feel free to ask or comment on anything, I wish you well, take care.

The photo is of my wife and me, on one of our 9 mile walks between chemos, from Leigh on Sea to the end of Southend pier and back.

30 Replies
Hidden
Hidden

Congratulations. I like the positive attitude. I was told thirty months ago that the average patient with my diagnosis survived pa for 6-9 months. I told the Oncologist that he luckily did not have an average patient. Still feeling fine and enjoying life.

By the way, I used Insure With for travel insurance. A long weekend in Baku for the F1 fully insured for about £50. Maybe more interesting than the Isle of Wight.

rottenrunner
rottenrunner in reply to Hidden

thanks Tdoy, I think it threw the doc having someone smile back at him, lol, I'll have a look at Insure With, thinking of going away prob be oct half term now, all being well. Thanks again

Well Done.

Do you think the CBD oil has started to work for you. Alot of people think this oil is the answer.

I don't know if it's the cbd oil, or going vegan or being 100% positive, so keeping going with all of them.

Good to hear your story. Keep up the good work. Were you tested for mutations when you were diagnosed? X

rottenrunner
rottenrunner in reply to Bow-19

Thanks Bow-19, not sure what I was tested for, but they found it had spread to the lymph nodes and my bones, and my left lung.

Bow-19
Bow-19 in reply to rottenrunner

Sometimes when people are young they have EGFR, ALK or other mutations. It can affect the treatment that people get. It might be worth asking if it was appropriate for you to be tested ?

Just a thought x

That is brilliant, I’m sooooo happy for you well done for staying positive I think that would have helped but great move on healthily diet and the cbd oil just brilliant.

I tried to get my mum in law on several occasions to try it she refused she thought it was Canibis I explained it the process she wasn’t interested. I so wished she’d tried it. She died Christmas Eve 2.5 years after diagnosis age 61.

Keep going with the cbd, wish you the very best. Enjoy the Isle of Wight you deserve it.

🤜🍻🏆

rottenrunner
rottenrunner in reply to Tcam

Thanks Tcam, sorry to hear about your mum in law, and still quite young. It is disgusting though, quite an art to get it under your tongue and not to get any on your taste buds, then to drink some dilute orange and swallow, lol, looking forward to our holiday, very much.

Well done 👍. Great post to read. You sound like you were in the same place as I was. I was told that ‘1 in 3’ people would be here in a years time. I felt fit and was running a lot at time of diagnosis so didn’t seem right that I could be so ill. I had four cycles of cisplatin and pemetrexed with the five day slump!! Had PET / bone scans as had activity in nodes in chest and neck. I had radiotherapy and then became eligible for surgery. Had a upper right lobectomy. Like you I kept myself fit and active as much as I could during treatment. My original diagnosis was 5 years ago now. At the end of 2017 a node in my neck was spotted again and so I had neck dissection and radiotherapy but scans have been clear since again. I have run Snowdonia marathon each year since my lobectomy (doing it four months after surgery!). Feeling good and keeping positive attitude and following routine scanning protocol - although I do pay for PET scans occasionally as these have picked up my neck nodes where the CT scan would have missed it.

We have been to Thailand twice - went through Insurancewith and they were brilliant. Very reasonable and do a quote on individual circumstances. We had to cancel one booking at last minute (due to my dad having a fall) and they paid with no quibbles. Highly recommend them.

Again - well done to you and keep you the good work / attitude 🎉

Janey x

rottenrunner
rottenrunner in reply to Janey_H

Thanks Janey_H, wow Snowdonia just 4 months after surgery, I'm not up to marathon standard, but would love to try one eventually. Have got a couple of quotes now with Insurancewith, hopefully be going somewhere end of May and Oct, could I ask roughly what you pay for a PET scan, thanks, glad your all clear and running well.

Janey_H
Janey_H in reply to rottenrunner

Thank you. My PET scan costs £1350 so not cheap - but am sure it has meant I have had timely treatment where I may not have had it and so believe it was worth every penny. Can’t take it with you after all. Prices do vary from place to place - have had one done in cheltenham which was slightly cheaper (Cobalt clinic) but now get them done in Cardiff as easier for me as I live in Wales and there was some issue with data sharing from England to Wales! Good luck xx

rottenrunner
rottenrunner in reply to Janey_H

thanks, certainly worth thinking about.

Greetings from a fellow Essex person - we probably attend the same hospital. It was wonderful to read your very positive post. I was lucky in that mine hadn't spread and was operable; had mop up chemo. I'm now 2 years post op and very active. It's weird to have such a serious diagnosis and yet feel well; apart from the first few days after the op I haven't felt too bad at all. Good luck to you.

rottenrunner
rottenrunner in reply to SAH1

Thanks SAH1, glad all is going well with you, it just seems weird that someone can tell you your so ill, and yet you feel so good, I just couldn't accept it, so just carried on as normal. S.O.S hosp quite good I thought, just so busy. Take care and all the best.

Great to see your positive story. I had left upper lobectomy in Dec 2010 and diagnosed in Jan 2011 and was back to my swimming by the end of March that year going onto swim further than I ever had before to raise funds for Roy Castle. Like you I found travel insurance prohibitive yet travel had been a major part of our lives so we pootled aroud the UK for a few years. finally in July 2016 stressed out with my dad in and out of hospital with bowel cancer and my mum with alzheimers', decided a week in foreign sun was called for whatever the insurance cost. Shopped around and found it reasonable to go to Greece. Since been to Vietnam, Malaysia, Cambodia, Bali and various European destinations for pleasure and work. Have found insurance comparison site 'paying too much' good as it compares companies who insure with preexisting conditions and different destinations come out cheaper/better cover with different companies. So far used Saga, Cloudcover, Get Going. I met the founder of InsuranceWith last year and he said they are the only company to offer insurance to those even in palliative stages of cancer. good luck and keep going - very inspirational.

Thank you JeanetteR57, I've had some good quotes from Insurancewith, and will make a note of 'paying too much' thanks for that. Hope your mum and dad doing ok, take care and thanks again.

That's good to know. Yes, thanks - my dad recovered well from his 3rd bowel cancer and third major surgery despite coming out of hospital too soon and ending up with complications and going back in all that summer (cannula infection, catheter infection, dehyscence of wound and infection, DVT 6 weeks after discharge etc so you get the picture). Mum had just had a cataracts op at the same time as dad was in and out of hospital (she lives at home with him as her carer) so it was pretty full on at the time. Despite deteriorating with her dementia, they still get out and about going to a regular dance club, shopping etc. Thanks for asking. As others have suggested, I also have to take out single trip policies as annual policies seems impossible (not even quotable) but at least we can still get around. good luck

RoyCastleHelpline
RoyCastleHelplineAdministrator

Welcome to the forum and thank you for sharing your encouraging story, it is great to read about your positive attitude and being so active.

If you wish to discuss anything our Freephone nurse led helpline number is 0800 358 7200

All the very best

The Roy Castle Support Team

Thank you and will do.

Hi rottenrunner Insurancewith was a good deal for me but I only got insurance per trip rather that multiples. Also you cvs oil what brand and what dosage? Thanks

Hi Parchwoody, got a few quotes now from Insurancewith, seem good. my CBD oil is from 'iCBD', they're on facebook and have a website, they're based in Canterbury, I take about 8-10 drops in the morning and same again just before bed, I got a bottle in November and still got half a bottle left, good luck.

Thanks I forgot to ask what strength?

hi its Full Spectrum Cannabis Tincture-100ml

strength-25,000mg - 3500mg is actual CBD

21500mg is over 70 cannabinoids and terpenes.

thats whats on the label, hope that helps.

Rottenrunner thank you that’s great. I pray you are able to go away. My wife and I enjoyed Portugal for late summer sun and Berlin for the Christmas markets. ParchWoody

Thanks ParchWoody, we all had a great time in the Isle of Wight, we've got another break coming up soon to northern France, we're getting closer to the warmer weather with each holiday lol. Take care

Great news to hear.

Enjoy everything.

Best wishes

Hoggy

Congratulations rottenrunner so happy for you and your wife and I totally agree with being positive it goes a long way. Like you I was diagnosed in Sep/Oct and still have lung cancer stage 3b but like you I am very positive the immunotherapy treatment will work for me. Though I have hit a blip on my journey I hope to continue soon. Wishing you all the best for the future. I just love to read these great stories. xx

rottenrunner
rottenrunner in reply to Ollie13

Thank you Ollie13, hope you get over your blip very soon, and continue your positive attitude, take care and wishing you all the best x

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