Adjuvant Chemotherapy: Hi all. I can't... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Adjuvant Chemotherapy

SunshineAhead profile image

Hi all. I can't seem to find any real details about adjuvant chemotherapy in the UK online. I had a LLL lobectomy on 18th June and I am currently awaiting an appointment to see the oncologist to discuss adjuvant chemotherapy. Given my cancer is squamous cell stage 2B and the tumor was over 5cm and cavitating follow up chemo is advised to decrease risk of recurrence. I should say following post op biopsies the cancer has not spread anywhere. I know oncology will go through proposals fully at my appointment but in the interim I wonder can anybody advise if they have received this treatment. In particular, I would assume it will not be as regimented, last as long and perhaps not be quite so strong? I have no idea what to expect. Apparently it could increase my survival rate by an additional 5 to 6% and that's huge as far a I am concerned as it takes over all surival well over 50%! Does anyboy have any thoughts or knowledge of this?

11 Replies

Dear Sunshine Ahead

We have a patient decision aid which provides some answers that you are asking: this link will detail all the information (including statistics as you have already mentioned) and duration of treatment

documents.roycastle.org/Che...

Hope this is of some help for you.

Our Freephone nurse led helpline number is 0800 358 7200 if you wish to discuss anything.

All the best

The Roy Castle Support Team

Hi I have now read through this information in detail and thank you so much for providing this to me. Much of it is tough reading but at least now I can make an informed decision.

Hi SunshineAhead, I had a pneumonectomy back in 2012 I had surgery to remove the whole lung, I was offered adjuvant chemo which I agreed to, however I was unable to tolerate it after just one session , so was advised to stop. Back in 2015 I developed an adrenal gland tumour, which had stemmed from the lung cancer. This was cured by surgery. I was offered adjuvant chemo again. This time the chemo seemed ok. Not pleasant but bareable. I have now been discharged and there is no sign of any re occuring cancer. My opinion is give it a try. I think if I could have managed the first time it would probably have worked for me. :)

Whatever you decide I hope it works well for you.

Hi SunshineAhead

I has a URL October 2012 and my tumour was over 6cm stage 2b, I had Large Cell with no spread . I had four rounds of Adjuvant Chemo ,with Cistplatin and Vinorelbine every three weeks was the plan but my white cell count dropped every round so I ended up with chemo every four weeks. I must tell you it's doable totally doable , Cistplatin is an infusion over a good few hours , Vinorelbine is tablets on the first day along with Cistplatin and if memory serves one week later.

I'm looking forward to reaching seven years remission this October , feeling good enjoying life , time with family and friends loving my holidays and planning more special trips . I am semi retired doing a couple of days per week at local hospital and walking my gorgeous boy Woody (whippet), lol.

You can cope with the regime I understand the Cistplatin is quite a toxic drug but you will manage I'm sure.

Remember be kind to yourself and rest lots , don't panic and it's soon over with .

Sending best wishes .

Jane

SunshineAhead profile image
SunshineAhead in reply to janeg4

Thank you so much for your response which is very helpful to me. I was somewhat naive at the outset in thinking as it was a mop up chemo so to speak it would not be as tough and regimented but clearly it's the same - just fewer cycles maybe. It does seem that a large % of patients that remain confident, strong minded and better informed, do appear to fair better than if they were not and that shoud be a good point for myself. (Obviously as in anything in life there are also some that would not necessarily fit into that category).

I am so pleased that you remain "free" and clearly living your life to the full. Long may it continue and well done you.

Hi ,I had adjuvant chemo post right upper lobectomy in 2015 ,it had already spread to my lymph nodes .I had four cycles of cystaplatin and venerabaline .I did experience some side effects mostly peripheral neuropathy which although it did resolve a bit I still have a little .Nausea was resolved with medications and I did feel a bit sleepy and generally yuk whilst on treatment but once completed I slowly returned to my normal self . Unfortunately my cancer did return 2years later ,but I don't regret having this belt and braces chemo it was the right thing for me to do .It is challenging but it is doable .We have moved on a bit now so chances are you will be offered something different ,good luck on this unplanned journey .Basically none of us want cancer not matter how it came to us .My message is keep strong and keep going .Diane

Hi, I had an URL in January 2018 stage 2b with 2 lymph nodes involved. I opted for the adjuvant chemo for the extra 5% 5 year prognosis taking it to 35%. 5 people in 100 is worth a try. It was a combo regimen of Cisplatin and Vinorelbine, gold standard treatment. There were 4 cycles, Day 1 Vinorelbine only, day 8 both together and it took 8 hours that day. Then a week off and start again. It is a strong chemo and I’m afraid I had lots of problems but none that weren’t sorted by a stay in hospital twice. Unfortunately cycle 4 was taken off the table by my oncologist. Since then I have had 3 monthly, now 4 monthly scans and have been No Evidence of Disease since. I hope my October scan is the same! Lots of luck to you, it is a difficult time, taken up with hospital appointments all the time but when it’s over you will feel well again x

Hi I am so happy the treatment worked for you and that you remain clear. I am at this point of the view that I will "sign up to it" at least for as far as I can (and hopefully I can cope with the full treatment). I am sorry it rendered you to have to stay in hospital on a couple of occasions - are you actually able to say specifically why this was and what treatment you received then.

I can only agree with what others have said - I found it very doable. A little nausea, some sickness on the third round (I think it might have been a bug which was exacerbated by the chemo) and anaemia towards the end of the treatment. I still socialised and carried on pretty much as normal, just at a slower pace. Be kind to yourself and remember, if you do find it unbearable you can always stop.

SunshineAhead profile image
SunshineAhead in reply to SAH1

Thank you for the very helpful and frank comments. I am glad it has helped you and good for you for not letting it stop you living your life.

I wasn't offered it as the evidence was that it didn't work for the rare form I had (mucinous BAC) so my follow on 'treatment' has been 'watchful waiting/active vigilance' with regular imaging/follow ups that quickly went into annual checks after a short while. My surgery was in Dec 2010 and a 7cm tumour (type of adenocarcinoma) removed. Chemotherapy regimes themselves come with risks of side effects and late effects and these need properly explaining to the patient in the discussion. Having met many patients who are suffering with late/side effects of chemo and radiotherapy, I'm thankful I haven't had those. If the type of tumour is known to respond clinically, it is usually offered in the UK but as you've already seen, there are different regimes (determined by the tumour itself, the genetic make up of the patient, any other conditions, patient fitness etc). Worth discussing with your own clinical team about your specific circumstances as lung cancer these days is treated in a more targeted personalised way than any information on the internet suggests as usually that is everything lumped in together to provide average figures and as none of us is 'average', such data often causes more fear than good. good luck.

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