Adjuvent chemo

[seasidebob]

Hi. I had surgery for NSCLC three weeks ago and they removed the right upper lobe. The pathology report showed that the tumour was 44mm largest dimension and that the cancer had spread into the adjoining lymph nodes but not the distant ones so my cancer has been staged at pT2 N1 M0. As there is node infection and the tumour is more than 40mm, the recommendation is that I now have four chemo treatments - one a month for four months - with cisplatin plus another drug. I haven't seen the oncologist yet but has anyone else been in this situation and are there alternatives to standard chemo? Many thanks for any information you can give, it's all helpful.

[janeg4]

Hi seasidebob

I had four rounds chemo cistplatin and vinorelbine it was doable honestly i lost my hair not everyone does though . I was diagnosed sept 2012 nsclc stage 2b i think my tumour measured just over 6cms at largest point and had open thoracotomy oct 2012 right upper lobe. I have heard carboplatin is less toxic with fewer side effects you could ask about alternative drug . Good luck

Jane

[Bow-19]

Just wondered if you had been tested for mutations? They can test for this from a biopsy and there are targeted treatments available. Roy Castle Lung Cancer Foundation also has a booklet on their website about them.

I was diagnosed in Nov 2013 with NSCLC with ALK mutation. NHS initial treatment then was permatrexate and cisplatin. It did knock the cancer back. Then later I had a targeted chemotherapy tablet which I still take twice a day and which has a lot less side effects. Now in the UK for ALK people are put on to the targeted treatment first and don't have the general chemotherapy.

Hope that you find the best treatment that is available to you Xx

[ninjananny]

Hi seasidebob,

My husband was diagnosed on 7 October 2016 with T4 N2 M0 NSCLC. His tumour was enormous, it occupied about a third of his left lung. Due to its location, it was not possible to operate. In October his treatment began with 3 cycles of chemo (cisplatin & vinorelbin). During the last cycle in December, he also had 20 days of radiotherapy, concurrent treatment. In March, last month, my husband had his first scan since his treatment finished. We are delighted to learn that the tumour has been almost obliterated and there is only a tiny trace in two of his lymph nodes. No further treatment necessary for the time being but his next scan will be in 3 months, just to keep an eye on things. His oncologist also told us that his biopsy showed that he is 100% positive with regard to the PDL-1 genetic test, this would mean that should he need further treatment in future, he would be very well suited to immunotherapy drugs. I hope this helps and wish you the very best with your treatment.

Best regards,

Judy

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear seasidebob

Welcome to the forum and sorry to hear about your diagnosis.

It is normal to have chemotherapy post surgery if there has been any spread, which can aid in either reducing the tumour size and perhaps destroying the cancer cells.

We have lots of information on our website on chemotherapy roycastle.org and have placed the direct link below:

documents.roycastle.org/AYQ...

Cancer research UK also have good information on Cisplatin, this is the direct link:

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[alice111]

My husband had a open thoracotomy nearly 6 years ago for adenocarcinoma ...he didn't have adjuvent chemotherapy as the surgeon stated that the cancer was fully excised . I have to say we were worried...we saw an oncologist who agreed with the surgeon...I'm pleased to say that the cancer has not returned so the advice was good despite our concerns.

[seasidebob]

Thanks everyone for your comments - it's really useful to have first-hand information from people who have been through it. I've just got back from meeting my lung cancer specialist and he explained the path report in more detail. The hilar node was infected and there has been lymphovascular invasion so as the risk of recurrence is higher, the possible benefits of chemo are greater and it looks like I will be going down that route. While this first line therapy will probably be a cisplatin doublet, I am going to follow up on the mutation and genetic testing so that we have a plan if the first treatment doesn't work. Many thanks again.

[Hidden]

Hi Seasidebob, Like you in March 2015 I had a right upper lobe removed T2 N1 mo ,afterwards I had 4 rounds of adjuvant chemotherapy (cystpaltin and venerabaline).The oncologist offered it to me and initially I refused feeling I had been through enough ,however eventually I did have it after a weeks contemplation I don't regret it I feel it was belt and braces. It is not pleasant but doable .We are all different and perhaps you will manage well .I don't know of anything else on offer post surgery at the moment ,however things are changing quickly so you never know.However, I am still here all xrays and scans clear ,so maybe its worked for me. Good luck in your investigations and final choice .I obtained lots of information through Roy Castle site and also by contacting the McMillan team.

[seasidebob in reply to Hidden]

Many thanks Diane55 - I had the same reservations but like you I think belt and braces makes sense so fingers crossed! Great to hear about your clear scans - good luck with everything!

[Sarah-Helen]

I did it go for it, fight it with everything you have got. I had the same treatment 2.5 years ago, feeling great now, walking about 5 miles everyday, I can even run up a flight of stairs. At the time it was hard, but I listened to my body, slept when I needed to, and did what I felt up to. I didn't lose my hair, but I did suffer with bowel problems, fatigue, neuropathy, nausea, taste issues, joint aches to name but a few. but by keeping a diary I soon kept tabs on it and do whole heartedly believe that the adjuvant chemo has helped keep this horrible disease at bay. you can do it, and if you need help at any time, we are here to be a shoulder for you xx

[seasidebob in reply to Sarah-Helen]

Many thanks Sarah-Helen, it's great to get first-hand information on what to expect. I'm going for it - I've done two operations in the last three months so it would be daft to stop now! All the best with your recovery