Help about proposed treatment - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Help about proposed treatment


Hi everyone

I saw the medical oncologist yesterday for the first time and he is proposing a course of Cisplatin & Pemetrexed (Alimta) combined. Then, if this is successful at stopping the spread/growth then Alimata every 3 weeks 'maintenance' for the foreseeable future. When I questioned the requirement to potentially attend the hospital indefinitely I was told that this is the national gold standard treatment.

I have been diagnosed as having NSCLC Stage IV advanced locally, T4, N3, M1 although the small shadow on my liver has not been confirmed as being cancer, only likely in their opinion. The lung tumour is not operable or curable, but possibly manageable. I am not positive for Iressa.

My question is : Is the above the only treatment now available for people with this type & stage of lung cancer? Are there any others with my diagnosis that have been offered anything different? My reason for asking is I am currently well apart from an undiagnosed pain in my shoulder, I am not losing weight, all my vital organs are working well, my blood count & pressure are good, so the prospect of weakening my body with this treatment indefinitely is not a good one for me. Also, there is a history of Peripheral Neuropathy in my family which Cisplatin could trigger as a side effect - also not a good prospect. And, as an active person who enjoys swimming, travelling, work etc, the prospect of being tied down to a hospital month after month, as well weakened is not a good one. In my research & reading I had not heard of this 'maintenance' before - is it the norm now as that is what I am being told.

Many thanks


12 Replies

Hi Sally ,

You sound exactly like my mum ! She is 63 worked full time taken ill with stage Iv nsclc in July last year she had the 4 treatments of the permetrexed and cisplatin which I believe is the optimum amount to have the maximum effect . It did have some shrinking to mums cancer. She hadn't lost any weight in fact she has gained. She had very little side effects felt sick for a couple of days and a bit lethargic but soon back on her feet ! Now having maintainence dose every 3 weeks which she tolerates well and again only has a few days of feeling a little nauseous and tired.

This just our experience and I wish you well with your treatment x

snorman1 in reply to Madalyn10

Thank you for your quick answer Madalyn, much appreciated & glad to hear your Mum responsed well. A little question - does the ongoing maintenance mean that the person remains vulnerable to infection?


I'm on the same Chemo trea tment as you will be and I'm Stage 3b . Cisplatin seems to be the best chemo for those in good health as explained to me by Oncologist i.e. I'm fit, active and breathing heavier just on exertion.

My first cycle was a bit troublesome, but only because the anti-sickness pills I was given just didn't agree with me. Additionally I suffer from Pulmonary embolisms and had a couple of small ones during the first cycle.

Had my second cycle on wednesday and doc has altered my anticoagulent dosage. I have only taken one of the antisickness pills and feel much better for it. Little tip, wearing travel sickness wrist bands certainly helped with the queaziness. As for the Maintenance, I'm all for it, it means we can work out some vacation times to fit in with the 3 week cycle and I can plan when to do house maintenance. To me the hospital visits shouldn't impinge on my quality of life. I can honestly say that the weakening I've experienced during my treatment so far has not been debilitating - I just take things a bit easier. 2 days after my 2nd chemo and my wife says I'm back to where I was before the chemo started - e.g. able to run up one flight of stairs without gasping for breath!

The main thing is to be positive, trust your nursing staff and do try to live as normal a life as you can.

Wishing you all the best,


topgun in reply to topgun

Just to bring you up to date, I had the results of my latest CT scan today after having had my 4 cycles of Cisplatin& pemetrexed. For those with doubts about the treatment , here are my results .....

Tumour down from 2.5cm to 1.2, mediastinal nodes down by 60%, anterior node down to being measured in mm. Well worth the 12 weeks of chemo. I did suffer more with the final cycle, but that was to be expected.

What wasn't expected was to start the Pemextred maintenance tomorrow until ......

a) I get fed up with it

or b) It no longers holds the cancer at bay.

Not going to succumb to a) and not going to think about b) until Oncologist starts worrying!

Thank you for your reply top gun, very useful to hear about others first hand experience, much appreciated


Hi Sally,

Your consultant is quite right when he says that your proposed treatment is 'Gold standard', as internationally it is regarded as the most appropriate for your diagnosis. If your general health is good, this will stand in you in good stead for coping with your treatment, so continue to be active, but listen to your body.

If you require any further information about lung cancer and treatment you can view and order our literature on line

If you would like to speak to someone for more advice you can call our free helpline on 033 323 7200,

Best wishes, Beth, on behalf of Information and Support.

Hi Sally I have also had this combination of chemotherapy diagnosed November 2012 with stage 4 they reduced tumour by 30 % I have been on tarceva 100 mg since June going well apart from some nerve pain in left side which they don't know what's causing it . My cancer had spread to spine and my eye but the chemotherapy really helped hope you are ok it can make you feel pretty tired but steroids helped manage symptoms. Good luck

Hi I also had cisplatin/pemetrexed and now on Tarceva.Cisplatin is the bad boy.I think pemetrexed is pretty well tolerated by most people.The only other thing to ask about is any clinical trials you might be ok for.Best wishes.Julie x

Hi Sally.

First of all, so sorry your having to go through this - it's just horrendous having to get your head around treatment issues, on top of being diagnosed with such an awful disease.

My dad is a young 69 and has NSCLC with the added complication of a malignant pleural effusion. He's just had his 4th round of cisplatin/pemetrexed combined and he's doing okay.

The first round made him really sick, but after ending up in hospital we discovered he was actually allergic to the anti sickness drug! The next three rounds have been much easier, tiredness being the worst side effect. He actually said today he feels better than he has since he started the treatment.

He's thrilled that there has been no hair loss and very little sickness. He also had a scan last week (due to a small complication) and it showed the tumour had stopped grown and the small specks he had on his other lung had disappeared completely.

The treatment has certainly slowed him down, but from the little I know, he seems to be reacting worse than a lot of other people do. Many barely experience any side effects.

Good luck with your treatment!


Many thanks Cath, so glad to hear your dad has benefitted from the chemo and that it has been effective. Positive feedback does help.


Just an update on my chemo regime with Cisplatin & Pemetrexed; tumours and nodes all show significant shrinkage in the order of 50-60% after 4 cycles. hair loss increased and still continuing after 3rd cycle. Last cycle drained me the most, but still managed to do DIY every other day. Now on 3 weekly Pemetrexed maintenance. started yesterday and no side effects noticed so far. In addition to the medical treatment, I have been taking Omega 3 supplements (1000mg tabs from Healthspan ) and Curcumin ( 3 x 600mg tabs from Easywellbeing ) . Haven't changed my diet - still have dairy products, but have increased my intake of fruit ( Peaches, nectarines, apricots and pears ) and decreased the size of my meals. Weight has beensteadily maintained, although I could do with losing 5-6 Kg!

Hope all those undergoing the same regime obtain similar results.

Regards to all




That is great news to hear. You seem to have coped well with the impact of chemo and really positive to hear it has done the job it was designed to do.

Hope maintenance works well for you.

best wishes


on behalf of Information & Support team

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