We are currently producing a new type of information called a patient decision aid and need your help.

[InformationTeam]

This information will be in factsheet format and is designed to help people who have had successful lung cancer surgery decide whether or not to have chemotherapy afterwards. It will explain both the survival advantage and side-effects of chemotherapy.

We need to decide which side-effects to include in this information.

If you have had chemotherapy for lung canccer can you please tell us what side-effects concerned you, which you think we should include in this information?

Many thanks.

Jennifer Dickson, Information Services Manager

[Billculbard]

Hi Jen

I did NOT have surgery, but had chemo/radiotherapy. Does that count??

B

[jillygirl]

Hi jen,

I had my right lung removed in december. I was offered chemotherapy for precautionary measures and was told the benefit was a 1 in 20 people. There was quite a lot of risks and I was told 1 in every 100 people can severe side effects including fatality. I went ahead with the chemotherapy, felt very sick and nausea, i was very tired and this took effect the next day. I developed a rash on my face, was sent to a hospital nearbyfor some antihistermine, which cured it.

Even with the antisickness tablets I wasn't improving. After 3 days I went back to the hospital where I collapsed. I was put on fluids all day then sent home. Iwas due for more chemo next day. Next morning sick again and dizzy couldnt stand up. Back to hospital. This time they kept me in for 5 days. Consultant told me no more chemotherapy as it wasnt suitable for me. I could have been one of the 1 in 100 high risk people.

It was a shame it didnt work for me, however I did give it a go. The hospital staff were wonderful..

Anyone who does go for chemotherapy, I would tell themalways keep in touch with the hospital over the slightest thing. If you feel you arent well enough to work tell them. Most side effects are not as severe as mine.

[thatboy]

Hi Jen , I didn't have surgery either . My NSC (squamous) cancer was stage 4 when diagnosed . I had four cycles of Gem/Carbo chemotherapy which ended last september . I would describe the side effects that I had from that particular chemo as progressive . Basically they get worse ! After the first cycle I didn't feel too bad . Just a bit tired and low after the day eight treatment so I rested up . After the second cycle I developed neutropenia and had to miss the day eight treatment . From then on I had to inject myself with Granulocytes for several days after the day one treatment to stimulate white blood cell production so that my blood had recovered enough to withstand the day eight treatment . After the third cycle I developed quite severe anaemia and spent a day in hospital having a blood transfusion . During the whole course of treatment my bowel movements ran the gamut so to speak . I was lucky in that I never lost my appetite though did experience some nausea . Nd my hair fell out - though this is not supposed to happen with Gem/Carbo !

The biggest shock though was when it was all over . About two weeks after my last day eight treatment I developed severe Oedema . I put about a stone and a half in fluid and thought I was near the end . I couldn't walk (and I'm normally very fit) , couldn't wash or dress myself , and found breathing difficult . I looked like something from a horror movie ! Slowly the whole thing subsided and I have enjoyed some pretty good remission since then . This is just one individual's experience of course , but the chemotherapy certainly worked for me.

[Hidden]

Hi Jen,

I had the bottom lobe of my right lung removed in Sept 2011, I then started 4 cycles of chemo from Oct through to Jan 2012.

Originally I was on Vinorelbine and Cisplatin, but the Cisplatin gave me Tinnitus(ringing in my right ear) which is permanent although not severe. So I was changed to the sister drug Carboplatin and the Tinnitus did not get any worse.I did get mouth ulcers, constipation, and diarrhoea, appetite loss and tiredness occasionally. No hair loss but what little i have didn't grow.

I was extremely lucky in that none of my side effects wer really severe. Some days (probably 3 or 4) I did spend a lot of time in bed, it was a strange very lethargic tiredness, Wabbit as we say in scotland. I had slight queasiness also strangely some bad bouts of hiccups!!! I was fortunate that my wife and chemo team at the Anchor Unit were brilliant as she just had to phone up my chemo nurse and he arranged for tablets and mouth wash etc. for any of my grumbles.

What I would recommend anyone to do is to try and get exercise as much as possible when you feel well, also stay away from crowds as you really do not want to catch a cold, no less for reduced immune system but I found it agony when I sneezed.!!!!

Hope this helps.

[Hidden]

I had the top lobe of my left lung removed March 2011 and by my choice this was followed by 3 months chemotherapy on Vinorelbine and Carboplatin. Like others, I suffered with an overwhelming exhaustion after each session followed by lethargic tiredness, as well as constipation. I was fortunate as I was only sick once, after the first chemo session - after that it was just a feeling of being queasy.

I did not lose my hair, but it did thin out. My sense of taste suffered alonside the lack of appetite. I had to rely on spicy soups - and an occasionaly curry if I felt up to it. Ginger snap biscuits and ginger beer helped - and I drank gallons of water! My skin went dry and I was using a moisturiser and handcream a couple of times a day.

I would only allow people near me if they had no bugs or sickness, and then they had to use handwash gel. I discovered the delights of Corsodyl mouthwash, which I still use today - and the daily temperature checks! The maximum dose of Senokot daily also helped!

My legs, ankles and feet were very swollen and I was given Furosemide and also another diuretic, I still take them today as the problem has continued. I have to make sure I sit with my legs raised for most of the evening, otherwise my feet will still swell!

I did notice that my eyesight became a little fuzzier than usual, and I acquired large black floaters and flashes of light when it was dark as well as a fuzzy "veil" covering everything. I saw an eye specialist who advised me that the chemo had left calcium deposits on either side of the lens and at the back of the eye - no treatment for it, and I have kind-of got used to it now, it is only occasionally I jump at the "spider" in front of me to then realise it is one of the floaters!

And like Rabbie (above) I wish I had been told that the current thinking during chemo was to exercise and be as active as possible - I had been advised to 'take it easy', which I happily did! It has been quite a struggle to become active again, but I am getting there bit by bit.

And for all this - I am still happy to have had the chemo - if only for my own peace of mind, Given the option/choice again - I would still go for it,

[InformationTeam Roy Castle]

Thank you so much everyone who has shared their experiences so far.

The main side-effects that we are thinking of including in this patient information are: hairloss (10% of people get this), feeling or being sick (20% of people get this), extreme tiredness (20% of people get this) and fever with low white blood count (9% of people get this).

Do you think these are the right ones? Should we include or change any of them to either death due to chemotherapy (1% of people die from chemotherapy) or constipation (5% of people get this)?

As always, your thoughts and opinions are very important to us to make sure that we get this information product right.

Jennifer

[Billculbard]

Hi Jen

All my grey hair fell out after the second dose of chemo! What was left of my brown hair remained. After chemo ended, my grey hair returned.

Bill

[Hidden]

Hi Jen,

I think you should mention the changes in taste, loss of appetite etc. I forgot this point, but criomagan's post has reminded me and I now remember that 2 other colleagues on chemo for lung cancer that i was with also had this side effect.

Rabbie