Maintenance treatment: Hi, My dad was... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Maintenance treatment

Ina3 profile image

Hi,

My dad was just told that his lung cancer is shrinking again and no more metastasis in the brain too. 🙏🏼 So happy.

This was his second PET and MRI with the same results during more than 6 month period.

His meds are now Keytruda, Zometa, Alimta and Altuzan.

I am wondering for how long he should continue Zometa and Alimta? I want him to rest a little bit from chemo and continue Keytruda only.

Based on what doctors decide when to stop the chemo? What is recommended in this situation?

5 Replies

So pleased at your dad's results. It is really worth discussing with your dad's clinicians as lung cancer treatments are now very personalised based on the individual's tumour biology and their own genome and any other conditions they may have. some of the newer treatments are still unknown in terms of how long they're continued for but I'd be guided by their recommendations.

Ina3 profile image
Ina3 in reply to JanetteR57

Janette, thank you. His doctor is not in the US and that’ why I want to find out if they are giving the right directions. We did genomic testing for many genes and it was all negative. What are other options for personalized treatment?

JanetteR57 profile image
JanetteR57 in reply to Ina3

The Uk follows the NICE guidelines for lung cancer recently revised to include latest treatments as well as the society of cardiothoracic society nodule management guidelines enshrined into the lung screening protocol. The UK has more patients involved in clinical trials in lung cancer including the national lung matrix/TracerX. The major genomic testing done in the UK is EGFR and ALK but also PDL1 for immunotherapy. This is usually done via a panel of genes for those in the lung matrix trial (available at many UK centres) and based on the results, there are different treatments for different categories (this is Non small cell lung cancer only at the moment). The personalised element can refer to the dosage, order and type of agents/treatments given - i.e. surgery, before or after immunotherapy, radiotherapy then chemo or the other way around and the amount of dosage and intervals between dosages. There are many authorised for lung cancer treatment which is why it's considered 'personalised medicine' and why what is given to one patient may be different to another as it depends on the patient's tumour biology as well as any other conditions or genomic patterns a patient may have. Sometimes treatments are started, then changed as a patient's tumour may respond differently or the side effects may be too great. A national lung cancer optimum pathway was introduced over a year ago by NHS England (unsure if you're in Scotland or Wales) aiming to improve all timelines within the pathway - no single centre is yet achieving all of it but many are improving timing and personalisation issues. Really worth discussing with a specialist including a lung cancer specialist nurse what the options are for him and ask about any clinical trials on offer in his area. The length of time a patient is on certain treatments is still being researched to find the optimum dose without causing harm - and as some are very new, this is still being researched. the aim is to get it to a chronic condition management regime (like HIV - i.e. treatable not curable) and as with breast cancer patients who are on treatments for years at the moment, the optimum follow on period is less known. I've attended cancer research conferences in recent years in Europe and UK and seen that as soon as evidence emerges for a new treatment being superior to another, that treatment is put up for approval and so far, included in the UK pathway at the same time as other countries. There is so much work going on in the lung cancer space to improve survival rates and quality of life globally and the UK is currently a big part of this. hope this helps. good luck.

Ollie13 profile image
Ollie13 in reply to JanetteR57

Thanks so much JanetteR57 that was very informative. I am on keytruda (pembrolizumab) and aboyt to have my 10th treatment. This is the only treatment I am on and all I can say it's working so far very well for me. I wish you all good luck in whatever treatment you are on.x

JanetteR57 profile image
JanetteR57 in reply to Ollie13

That's excellent to hear - long may it continue. Good luck with your treatment and 'new normal' that we all have to develop. I had open surgery in Dec 2010 to remove half my left lung and a 7cm tumour. The type I had (mucinous BAC) did not respond to chemo so my follow up treatment has been 'vigilance - or 'watchful waiting'. i.e. regular chest x-rays and scans. I started to raise funds for Roy Castle with my swimming (to help my fitness recover) which was really good to set myself a challenge. At a Roy castle conference in Birmingham I met a patient advocate and CNS with lung cancer (advanced stage iv) given less than 6 months to live yet she spent the next 4.5 years advocating for lung cancer in various arenas, fundraising, lobbying for awareness that anyone could get cancer and encouraged me to get more involved. I did and have been privileged to sit on various committees and research groups since 2014. It's a pity there is not more publicity and awareness amongst not only general public but also healthcare professionals not necessarily involved in lung cancer including GPs are not up to date on the many promising developments yet overwhelm of information on the internet, much of it outdated and misleading can drown out the current situation. take care

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