To chemo or not to chemo?

Hi, 

my husband has a different cancer to you, but after chemo, surgery and more chemo they did a scan and said they couldn’t see any more tumour. They did say that the margins weren’t clear after the surgery so despite being told by the surgeon to go and live our lives, two days later we were told by the oncologist they wanted my husband to do 25 doses of radiotherapy and chemo. We were worried about side effects as he was so well. They said it was belt and braces as “you wouldn’t want to get to 5 years and have it come back and to say to yourself, well I wish they had done more at the time!” It sort of forced our hand, so 25 doses of chemo radiation it was. Side effects were minimal during treatment, but he has been left with some pain and a bad cough as it irradiated his heart and lungs on the way to the intended site. The decision is hard, and you have to weigh up the extra time it may give you against the short and long term side effects. Take care, Steph

Hello JBBee,

I had my right lung removed in 2014, the total removal was necessary because of the location of the tumour in the lung. My stage at diagnosis was T2A which was confirmed by pathology once the lung could be properly examined after removal.

I was told adjuvant chemo would add approximately an additional 5 percentage points to the long term survival rate (no idea what the starting rate was and didn't really want to find out at the time) and so far I'm still OK as I approach 10 years survival with no recurrence to date. I too had cisplatin and vinorelbine and, while not pleasant, I managed the whole treatment without major problems. 

I decided to take all I the chances I could get to increase my survival prospects and figured that if I didn't like it or if the effects of chemo were too harsh to put up with I could always stop treatment at any time. I wanted to at least give it a try and not be full of regret later if the cancer came back and I had declined the treatment. Fortunately I completed the course and haven't looked back since. It's a very personal decision and needs careful thought and I completely understand the doubts you can have as the start of your treatment approaches. 

I don't know anything specifically about being KRAS positive but if the treatment has been offered surely your consultant must consider it useful? 

If you have any questions about the treatment etc. just ask and I'll do my best to answer. Otherwise, I wish you all the best for a successful outcome.

Hi , I finished that combination of chemo in October . Found in lymph nodes after surgery even though no trace on pet scan. I wanted to take every possible opportunity so I didn’t live with regrets. Chemo was tough and it made me very Ill. I  think worsened by not knowing what to expect , but once got through first cycle , I took one day at a time and rode the waves . The treatment staff were a phone call away for me , I had blood tests every week . Saw oncologist every cycle and my treatment was adjusted .   I thought of the chemo  as a mop up . Clearing all the cells we couldn’t see . 

If I get recurrence , I will  do it all again . 

Thank you so much.

This has been so helpful, thank you.

Hi excavator  it is always lovely to see you posting, your story is inspirational and very reassuring to many people on this journey. Thank you for your support in the forum, it is very much appreciated x 

Thank you Chelle, it's very nice of you to say so. I'm pleased that my experience can help and reassure others who find themselves on a similar path, in the same way I found reassurance and inspiration from others here when I started my journey.

Derek.

Hi JBBee. 

I had an upper right lobectomy and a little of the middle lobe was also removed late October2023. My diagnosis was Adenocarcinoma T2b Nx Mo. Many lymph nodes removed too, just for testing.

My amazing surgeon found 2 cancers in my lung, one 4.5 cms and one smaller, nothing found in lymph nodes thankfully. He also told me that he was very confident that he had removed everything and that was the cancer all gone, but he said I may be offered curative chemo to make sure the cancer doesn't return. This filled me with dread.

As I started to feel better after the op an appointment letter arrived inviting me to see a medical oncologist consultant, my heart sank that day.

However, my husband and I, attended the meeting with her and she explained how her aim was curative to ensure the cancer didn't return. She told me all about the treatment I would have. It is called adjuvant chemo.

Pemetrexed and Cisplatin given on day one of 21 day cycle. 4 cycles. She told me about the side effects which sounded horrendous and I told her she wasn't selling it very well ha ha. She agreed.

My chemo started on 8th Jan 2024. I pretty much sailed through this one, no nausea but I did suffer badly with constipation. At my meeting with consultant before 2nd chemo she said that the anti-sickness pill they give you before the chemo helps greatly with nausea people are reporting no nausea but it does cause the constipation. She advised to take laxatives the night before next chemo and continue to take it for a couple of days after. This advice worked for 2nd chemo on 29th Jan. Good advice.

However with this 2nd cycle I did suffer fatigue which really wasn't pleasant. I slept a lot and spent way too much time in bed. No energy or enthusiasm to do my copd exercises.

This was a worry for me. I spoke to my consultant and asked if I could have the next treatment adjusted to suit me better. She agreed to give me one more week to get stronger before the 3rd treatment and that she would give me more steroids to take after. She said that this would help with the fatigue this time. Gradually reducing the steroids rather than stopping all at once.

I had my 3rd cycle yesterday, 26th Feb. A doctor came to see me before they started the treatment. We talked over how things had been for me and she phoned my consultant to discuss with her. My chemo was then made up. I had to wait a bit while that was done. Lets hope that the extra steroids do help too.

I thought it may give you some reassurance to hear that they do listen to you and how the chemo affects you and they are willing to adapt the treatment to better suit you. 

I have experienced some ringing in my ears too, that disappears when I yawn. So the consulltant is going to phone to find out how I am with that before the last treatment on the 18th March. If the ringing in my ears gets worse they won't do the 4th treatment.  She said they are considering, at the moment, that 3 cycles may be enough for adjuvant chemo. So it's just watch and wait.

Wishing you well and hope you can sail through your treatments. It's actually quite a pleasant day on the chemo ward. The nurses are so cheery and helpful and happy to chat if you have any concerns. I find the other patients are happy to chat too and share their experience with you. You learn loads of wee tips and can share your tips with them.

Good luck x