Pancoast lung tumour

Hello Fluffyblanket,

A warm welcome to the lung cancer forum, although I'm very sorry you have the need to join. I'm Derek, one of the community champions on here.

I had Cisplatin and Vinorelbine in 2014 following surgery for my lung cancer, I was 58 at the time. Side effects are likely to vary between individuals and you should have been given information on what you might expect prior to consenting to the treatment.

The effects for me were tiredness, fatigue, hair thinning, general aches and pains, loss of appetite / taste for food, constipation and weight loss. At the time weight loss didn't bother me as I had enough to lose to start with!

You should have been (or will be) told how to deal with side effects and what to report. During each cycle you will have blood tests etc. and be kept a close eye on. You'll be given various drugs to mitigate side effects and it's important to take all of these even if you're not experincing any problems at the time. They will work in the background to prevent problems arising. In the unlikely event side effects become too bad for you the dose will probably be adjusted to deal with this.

Side effects should gradually subside after completion, some quicker than others.

I hope your treatment is successful. Anything else, just ask.

Derek.

Thank you for your reply Derek. I was given information on what side effects to expect but I am so anxious. I imagine myself having each and every dude effect. Radiotherapy will commence on my second chemo cycle.

I mean side effect, not "dude" effect!

Yes I know what you mean,I thought the same but it wasn't that bad. You'll be well looked after during treatment. Just make sure that you take everything you're given to reduce side effects and tell your treatment team straight away if you get any effects you don't expect so they can intervene as necessary.

It is frightening at the outset but I'm sure once you get started you'll be fine. 

Derek.

Thank you Derek.

Hi Fluffyblanket

I'm sorry you find yourself here. My Husband aged 67, had the same treatment as you for a 9cm Pancoast tumour, followed by a lobectomy back in 2023/24. Everyone is different, but he didn't find it as bad as expected. He had some nausea for one or two days after the treatments, hair thinning but not proper hair loss, he lost his appetite because food tasted like cardboard, but he could eat. He also developed tinnitus. The radiotherapy caused dry skin and a little soreness, like mild sunburn and tiredness, but that could also have been the train journey to the hospital each day. 

He has some long term side effects but nothing he can't live with. Dry skin from the radiation, occasional mild tinnitus, and his tatse has only just started to return to normal. He had some other side effects from the surgery, a small hiatus hernia but again that is manageable now its diagnosed. 

But by the time they removed the tumour was completely dead, no evidence of disease. the chemoradiotherapy had done its job. Actually half way through the treatment the radiologist requested his consultant re-map the radiotheray as the tumour had shrunk so much. He came home from one radio treatement towards the end and announced that he had managed to run ofr the train - something he couldn't do when he was diagnosed.

Everyone's cancer is different and everyones side effects are different. I want to be honest there were side effects, good days and bad days but I also don't want to scare you as they weren't as bad as anticipated.

It must be daunting to face this on your own. Obviously, I cared for Mark but had he been living on his own as you are he would have managed, he was able to use the train to get to his appointments alone, cook meals if he needed to and go out to meet his mates once in a while.

I hope everything runs smoothly for you. Let us know how it goes.

Thank you so much for your reply. Unfortunately my tumour is inoperable. I have been warned about tinnitus and hoping that it doesn't affect me. As you say, we are all different with our side effects and coping mechanisms. My radiotherapy will be for 20 days, Mondays to Fridays. If I find the side effects too much I will ask them to reduce the radiotherapy.

Hi Fluffyblanket,

I'm sorry to hear your tumour is inoperable. My husband's was initially too big and the aim of the chemoradiation was to shrink it enough for a VATs lobectomy rather than full thoracic surgery. As it happened, the chemo and radio combination was enough to kill off his tumour completely, so that there were no cancer cells present when it was removed. In fact, the surgery was unnecessary.

The tinnitus is only occasional and is fading more and more as time goes on. Speak to your lung nurses about any side effects; they are always full of good advice and support. You will have regular blood tests and they will keep a close eye on you.

My husband had 30 days radio Monday to Friday and four fortnightly chemo sessions starting the week before the radio and finishing at the same time. The nurse in the radiotherapy dept did weekly reviews to check on side effects and gave him sachets of some magic cream (never found what it was called) for the dryness, but my husband says it was only like mild sunburn. 

I hope your treatment runs smoothly and is as successful as my husband's.

Hi Fluffyblanket I’m having 6 chemo and 20 radiotherapy over 6 weeks starting on 3 April week 1 and 2 chemo weeks 3-6 radiotherapy 5 days a week and chemo once a week. Followed by 12 months immunotherapy once a week. My tumour is 6.5cm and they are pretty confident it can be blasted without the need for surgery which I don’t want. I’m 68 and know it’s not going to be an easy ride but am staying positive.  Take care Susan xxxx

Thank you.