I have stage 4 lung cancer and had chemo therapy & immune therapy
Cancer has started to grow and now I have to have chemo 😢 also given no choice , got to have a PICC LINE !!! I don’t want this my body my choice. But got told I wouldn’t be able to have chemo therapy without PICC LINE
Has anyone else had problems with this??
Hi, sorry to hear that. I haven't got any experience of this but I thought I'd say hi as I live near Burton so you're fairly local! How long were you on immunotherapy for? I've just been started on it. I hope you get some answers to make the best decision about the picc line.
I immune treatment for 2 years and was great no problems a little nausea but nothing I couldn’t handle! Soon as the treatment stopped last October, cancer is growing
Thanks. That's what they've warned me about too. They don't know how long the drug will work for.
Are getting treatment at Burton?They have been brilliant with me but now I feel so alone, Mcmillan nurse useless don’t even bother calling or visiting
I am so scared and confused
Wishing you all the best
Yes, I'm at Burton. I had a lobectomy last year at Glenfield but the cancer has returned. The Macmillan nurses have been lovely so far. Have you tried calling the 24 hour line to discuss your concerns with a chemo doctor? Yesterday they told me not to hesitate to call. Wishing you all the best.
Thanks 🙏, I will try on Monday to call and am at Burton but my Mcmillan nurse is Derby Take care and all the best
I also have stage 4 lung cancer. I had a picc line in for much of 2016 when on chemo and another from December 2017 for two years when I started immunotherapy. I far preferred it to the battle to find a vein for a cannula. I had no problem with mine, wore a cover over it in the shower and had it flushed and redressed weekly, I now have a port and although that is a little more complicated to insert, it is under the skin and once the site heals there is no need to wear a waterproof covering when showering. Also it only needs to be flushed once every four weeks. Just wondering whether that would be an option for you. I pretty much forget I have mine but it is there when needed for bloods and treatment. I can understand your reluctance to have something you don’t want put in your body, but it will make blood tests and treatment much easier. Hope this offers a little reassurance. Wishing you well with your treatment xx
Thanks for messaging me, will consider but I feel it would have been nice to given a choice! I also scared about losing my hair
Nobody has talked to me about this
It is disappointing that you were simply informed that is what would happen, rather than it being discussed with you. Also that you haven’t had the opportunity to discuss such things as your fear about losing your hair. Can you speak to your lung cancer nurse specialist about your concerns? The RCLCF nurses would also be very helpful people with whom to discuss your worries. x
Who are they RCLCF nurses ?
Hi, my husband had lung cancer & Macmillan were absolutely useless, they never called or visited & just sent endless booklets!I’d strongly recommend either Roy Castle Lung Foundation nurses contact them on Ask the Nurse helpline on 0800 358 7200 or email lungcancerhelp@roycastle.org. I’m not sure if it’s open at weekends.
Marie Curie were also exceptionally helpful & I found them kind & supportive. Helpline 0800 090 2309
Talk to as many people as possible, I wish you all the best...sending a virtual hug xxx
Thanks so much
Roy Castle Lung Cancer Foundation nurses. They can be contacted on the Ask the Nurse helpline 08003587200. They operate 9am to 5pm Monday to Thursday and 9am to 4pm on Fridays. x
Hi can I ask when was you diagnosed? And what treatments have you had and how have you coped with them, I am having immune therapy at the moment be interested to know your experience x
I was first diagnosed in 2016. No lung cancer symptoms other than fatigue but horrendous back pain. Was eventually diagnosed with nsclc and bone mets. Had seven days’ emergency radiotherapy as my spinal cord was about to go into compression, then four cycles of combined carboplatin and pemetrexed chemo followed by five of maintenance pemetrexed. I didn’t cope well with the latter and spent much of each cycle in hospital. I stopped the chemo as although it had reduced the tumour in my lung there was a high risk of further chemo related sepsis. I had a break from treatment for a year other than for denosumab injections to help protect my bones. Then when there was disease progression I commenced Pembrolizumab immunotherapy in December 2017. Apart from severe skin irritation at the start of treatment, which was sorted with oral steroids and some more latter issues with nasal secretions, sorted with an antihistamine nasal spray, I have found immunotherapy much easier to tolerate than chemo. My quality of life is much better now. I hope you find that immunotherapy works for you and that you feel well on it. Skin irritation seems to be quite a common side effect and if you experience it I would opt for an oral steroid straight away as I tried loads of creams, lotions and potions, including a steroid cream, but none helped. A course of oral steroids sorted it really quickly and it hasn’t been a problem since.
Hope this info is of help.
Sending best wishes and positive thoughts. x
Hi thank you for replying. I too had no symptoms and rocked up in a&e with blood clot! Have only had 2 treatments so far and no side effects so far🤞 I see you have been on immune therapy for longer than the 2 years and it doesn’t seem to have caused you any issues? If u don’t mind me asking how have you managed to continue? I do hope they change this ruling I know that it can continue for melanoma , but I feel there is a stigma associated with lung cancer! I know in the states they continue till it stops working! Wish you all the best for the future and long may you stay well 🤞
Hi there, wish I could have immune therapy again but only can it for 2 years because of the cost ! Not looking forward to chemo
I bet it really is a shame it can only continue treatment for 2 years I think it’s totally unfair! But your probably right it’s a cost issue! Should continue like in the states. Hopefully the chemo won’t be too bad 🤞🤞
The thought of having chemo is making me sick Thanks 🙏 you take care
Thank you.I think it is pretty hopeful if you haven’t had side effects so far you may avoid them. It seems with immunotherapy the side effects usually hit sooner, unlike chemo where the risk of side effects seems to increase with the number of treatments received.
I have stayed on treatment as I have private medical insurance, but am part of a national campaign seeking to get treatment extended for all lung cancer patients who benefit. NICE’s explanation for the disparity in the treatment of lung cancer and melanoma patients on immunotherapy is simply the different timing of the guidance for each being produced. Obviously cost will be a factor. I am aware that as an optimum treatment period has not yet been established, it could be I am not gaining anything by continuing on treatment. Also that there is evidence of the benefits of treatment continuing after treatment has stopped. One oncologist advised me that continuing beyond two years could place me at greater risk of autoimmune diseases, but these are risks I am prepared to take. My private oncologist supports treatment until disease progression or unacceptable toxicity. What I would like to see is NHS patients being treated in the same way.
Wishing you well with your treatment and hope you stay as well as possible. x
Really appreciate you sharing this with me, I wish I could go back to immune therapy but no chance of that ! I don’t like the thought of not having a choice but been told! I fear this is the last of me .God knows but I wouldn’t have been here if I wasn’t misdiagnosed in the first place. I kept saying is it cancer but 3 consultants said NO .
That is awful I am so sorry to hear you were misdiagnosed. I hope you are pleasantly surprised as regards chemo and despite Covid there are still new treatments for lung cancer being developed. I try to do what I can as regards healthy eating, exercise, etc. too as I think we feel better for knowing we are doing what we can to help ourselves. Obviously also having a few treats though! 😊Sending love, best wishes and positive thoughts. xx
Thanks so much and I was waiting for a trail but government has put a stop 🛑 during covid19 Again I really appreciate you so much for getting in touch 🙏😘
You are very welcome. That is very disappointing about the trial. Obviously on this forum we are all here to support and encourage each other so don’t be afraid to reach out as and when you need to. 💕xx
💕
Dear Chester1967
I am sorry you feel there is still a stigma with lung cancer and we are dedicated to providing information, promoting research and support all who have concern about symptoms or have lung cancer.
In the UK, Immunotherapy at the moment only has a license for up to 2 year use for lung cancer; this is based on the research that was done in earlier clinical trials where the trial design was up to two years.
More research continues into this relatively new area of treatment and provides hope for many.
It has been an interesting find, that for some people who stop their treatment after the two years, the immune system seems to continue destroying the cancer cells.
Our free phone nurse led helpline number is 0800 358 7200 and our email is lungcancerhelp@roycastle.org if you would like to discuss anything.
Kind regards
The Roy Castle Support Team
My cancer has started to grow after October last year when immune therapy stopped Not happy to have chemo but got no choice
Regarding trails not happening due to covid19
Dear Swadlicote
It may be worth asking about the clinical trials again as I know many are trying to reestablish their trials as soon as possible, or at least if they have your contact details for when they do start again.
A list of clinical trials can be found on this link from Cancer Research UK:
cancerresearchuk.org/about-...
of the National Institute for Health Research:
All the very best
The Roy Castle Support Team
Thanks I will try asking but nobody is listening to me
Sorry to hear that you feel no one is listening to you, it may be better to put everything in writing to elicit a response.
You could perhaps email the lead investigator for the trials, most of the clinical trials that are listed have their contact details.
You are entitled to a second opinion in the NHS and you can do this either through your GP or your specialist.
Good luck
The Roy Castle Support Team
Thanks very much
Thanks 🙏 so much
Your very welcome sending big hugs your way xxx
I had a picc line as the chemo I had was very toxic even the nurses said it was a nasty one
After the first round of IV chemo I asked to have one.
The choice is yours see how it goes and take it from there.
For me the Picc line was a better choice x
Hi , iv been having treatment for nearly 2 yr, a combination of 2 chem and 1 immune. I had a picc line in because treatment was every 21 days, I’m now on maintenance immune every 6 week, so I had the PICC taken out as it wasn’t worth the risk getting flushed every week at the surgery or hospital with covid going on, I had no problems with it. Hope this helps x
Dear SwadlicoteI have emailed a reply to your query, if anyone would like to discuss any issues that have been raised in the replies, you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200
Kind regards
The Roy Castle Support Team
I had 4rounds of chemo and nearly completed 2yrs of immunotherapy without a pic line ,maybe my veins were ok ,Either way I hope it all works out for you .I did think about a pic line but just kept avoiding it .The chemo team were very supportive although I will say my veins were feeling sore come the end .Good luck Diane
Thanks so much and see how tomorrow goes in meeting with the nurses
Rejection of Alectinib 1st line
Don’t know where to turn
Next step of the journey
squamous cell lung cancer
Just sharing with someone.
