The Roy Castle Lung Cancer Foundation
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After care or preventative treatment????

Hi Everyone and All!

I hope you are all keeping strong and positive!

I've posted here before with regards to my 77yr old mum who was diagnosed with NETS cancer October last year.

She was diagnosed with large cell Neuroendocrine cancer 1cm to her lung and 4cm to her liver.

After 2 cycles of both Etoposide and Carboplatin chemotherapy she was sent for an mri which showed that the tumours were shrinking.

Just to her recovery after each episode, a recovery from sepsis and other infections she is now waiting for her 4th cycle next Wednesday.

We were initially told that she would be put forward for 6 cycles but after her appointment this morning with her Oncologist, they have advised that the 4th will be her last one?

Apparently 4 cycles are as good as 6???

The oncologist said her latest scan ( 3 weeks ago) showed that their had been cancer lesions to her bone on her hip, spine and knee which has successfully been targeted by her chemotherapy and is showing signs of healing.

After her 4th chemotherapy cycle next Wednesday she is to be sent for a further scan to see if there has been any further reduction in the cancer.

If so they will stop at 4 cycles.

I raised the question that when my mum has finished her chemo next week would she then be given preventative treatment via oral medication or a trial medication to ward of any further cancer cells or to prevent the remaining from growing.

As I said she's had a hard time since October with the treatment and I wouldn't like her to go through this again.

The oncologist said that their wasn't any preventative treatment for this and that they will monitor her closely and if the cancer remains dormont then fine but if not they will look at alternative treatment.

I them raised the fact that we booked a cruise for July this year ( booked months before her diagnosis) and I would like to give my mum the best possible chance of being able to go on it.

The oncologist said unfortunately that's the problem with cancer they can only wait and see!

My cousin sent me an article that was in the times today which states due to cuts etc that tgey were reducing 6 cycles to 4?

So I will be bringing this up on our next visit in March.

Can anyone enlighten me on this?

Isn't their any preventative treatment for this cancer or trials being given?

Anyone with this type of cancer can you advise as to what happened when your chemotherapy ceased and what happened 're 'careful monitoring" or were you offered further treatment?

Thanks in advance x

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Hello Hopes77! Sorry I can’t comment on chemo or radio therapy, as I have never had the treatment. It seems that as there is tumour shrinkage the chemo is working. Still aim for the Cruise it will give your Mum something to look forward to. I booked a trip to America before my operation last year not knowing I had cancer. and next month I will be flying out to USA. Dreading the insurance prices.

All the best to you and your Mum.

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Daisy, have a look at 'travel with' and 'paying too much' travel insurance websites for those with existing conditions - should help reduce it a bit. enjoy USA.

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Hi Janette R57. Thank you for Insurance information. I have wrote it in my diary. I have travel insurance with my bank. Which I have thankfully never needed when on holiday. I have sarcoidosis which is ok for Insurance. I have never been bothered by it. Strange thing is I had a cancer in my lung for decades and never knew or suffered from it. The USA seems to stop people entry for all sorts of things. So although it’s not there anymore I think I had better be honest, just in case. It’s 6 weeks to go 29th March. New York for a week then New Orleans for a week. I will let you know, when I find out. You are very good at information and helping others. As you and others have gone through the physical, emotional, medical and mind blowing horrors of cancer and I only had 2 weeks to take in the news 5. Weeks post op. before I saw Oncologist and thankfully didn’t need to have chemo. I admire and respect you all for the challenges you face daily in treatments and the fears of will it go? Will it return? I have learnt a lot from reading about the posts and advice on this forum and many thanks for sharing.

Many blessings.

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Hello Hopes77, as your clinician has advised, it will be 'surveillance' on their part which is all I have had since my surgery in Dec 2010 for lung cancer (7cm tumour removed) through scans and x-rays. Shrinkage is good and shows the systemic therapies are working. Agree - go on the holiday - best to get your/her mind off it for a while. I found a book 'Anti-cancer - a new way of life' by Dr Servan Schreiber a help in providing some guidance about what could be done to improve lifestyle and 'Cancer is a word not a sentence' by Dr Rob Buckman to help with mindset. Several treatments are altering their amount of cycles - not due to cuts as suggested but due to evidence that the outcomes do not differ in terms of overall survival or progression free survival by bombarding patients with more and more harsh treatments so potentially they are doing more harm than good as the treatments kill off healthy cells as well as cancer cells reducing the body's ability to fight other illnesses. Other trials are using different combinations in lower dosages as cancer treatments (chemo or radiotherapy) are so harsh. Personally I didn't want to be dependent on poisons, radiation or drugs if it could be helped - but it can be hard to deal with the thought of the time between scans but if anything untoward happens, I'm confident that I would be pushed back into the pathway as this has happened a couple of times in the last few years. Thankfully neither turned out to be sinister but at least they investigated just in case. good luck.

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Thanks JeanetteR57 your post makes a lot of sense.

My mum has her final chemotherapy tomorrow and we are waiting for a date, late Feb for her mri scan to see how much more, fingers crossed this has shrunk.

I'm praying that either the cancer remains dormont or stays the same size without causing my mum any problems so she at least has some quality of life.

It's just hard trying to accept that there is at present no preventative treatment but medicine is evolving quickly.

After this chemotherapy it is my aim to build her up physically and mentally and aim for her cruise x

Thanks for your speedy response x

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Sounds a great plan to me. good luck. x

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Hello Hopes77

There have been excellent responses to your questions, there is not much to add to JanetteR57 who has covered everything so well. Treatment plans are based on research evidence based practice and through this it may be that 6 cycles are just as effective as 4 cycles of chemotherapy. However everyone is different and each treatment plan will be according to what is best for the individual to achieve the best possible outcome.

The cruise sounds lovely and so important for something to look forward to.

I have placed a link below from cancer research UK on current clinical trials , there is not a current one for neuroendocrine tumour of the lung, but you may find this of interest.

cancerresearchuk.org/about-...

The other option your Mum may wish to consider is to ask if there are any clinical trials available that she may be eligible for.

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

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Thanks for your quick response x

Yes the posts have been brilliant and have helped me make some sense to the chaos lol.

My mum has her final chemotherapy tomorrow and we are waiting for a date in the next week or so (towards the end of Feb) for her mri scan to see how much it's shrunk.

Fingers crossed it has.

I remember the oncologist saying if it remains dormont or stays the say size they are happy. So I'm praying for this.

I'm going to purchase the books that JeanetteR57 has suggested and I'm concentrating on building her up ready for her cruise.

I will mention the trials to her Oncologist should any be available in the future and will keep checking the link you have provided.

Kind regards x

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