Update - Immunotherapy treatment - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Update - Immunotherapy treatment

Kayben21
Kayben21

Its been a while since my last post, since my partner was diagnosed with incurable lung cancer with spread to an adrenal gland. I've thought long and hard about posting this as so many are so distressed about their situations, but felt it may help offer some hope to others. My partner was an ideal candidate for immunotherapy and has completed three cycles of Keytruda Pembrolizumab. Without treatment prognosis was only a few months. He had his first scan and his oncologist shared the incredible news this week that he is responding to the treatment. His lung mass has shrunk by 20%, and the adrenal gland has remained stable, no further spread. Whilst it is incurable, he will continue the same treatment and the hope is he continues to respond. We will always continue to take it one day at a time, and make the most of every day. But we are truly thankful for him being able to receive this treatment, which so far has resulted in no side effects other than itchy skin which antihistamines control. We know this can all change, but for now it is simply amazing. I hope this post can offer hope to some people on what is a terrible journey.

14 Replies
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Hi Kayben, I do hope the treatment keeps on working for him. It has just brought it all back to me as I had the same but mine was operable. The adrenal tumour appeared 2 years later . I was fortunate. I do so hope your partner stays strong and optimistic. :)x

Kayben21
Kayben21 in reply to jillygirl

Thank you jillygirl. We are both doing our best to stay optimistic and supportive of each other. It is very helpful to hear good news stories and people experiences x

This is great news! Hope it continues working. I have just had another scan and mine has remained stable on pembrolizumab for nearly three years now.

Kayben21
Kayben21 in reply to Manninmaid

Hi Manninmaid. Thank you, and I'm so pleased to hear how it is working for you. Long may it continue x

Manninmaid
Manninmaid in reply to Kayben21

Thank you xx

Hi

I was diagnosed just over 2 years ago with stage IV NSCLC with brain and adrenal mets. My treatment for the brain was steriotatic radiosurgery - one session 2 years ago this month and NED. I started Pembrolizumab 29 November 2018 - my first scan showed massive improvement after 4 infusions. Then I had PET scan last July which showed adrenal met gone and lung tumour very small. I had ablative radiotherapy last October, 5 sessions, then carried on with Pembro - last scan in September NED. I will have my last infusion on 19 November. I had been given really poor prognosis and consider myself so fortunate to be a)eligible and b) able to tolerate Pembrolizumab - my only side effects some fatigue/upset tummy for few day and itching - use antihistamines every day which really helps me with this.

I am anxious about my treatment ending but am staying positive and strong - I truly treasure the time I have been given thanks to immunotherapy and my tolerance of it.

I know I can’t go back on Pembrolizumab if I do progress in the future but for now I take each day as it comes. There will be other treatments out there.

I am so pleased that this is working for your partner and hope my post helps!

Stay strong and positive at the start of this journey, from a patient who was never expected to make it to the end of treatment! ❤️

JanetteR57
JanetteR57 in reply to Elt79

sounds as if your great attitude and approach is supporting you well. as you say, take it a day at a time - I've met several patient advocates over the years who thought they were at the end of the road and on a clinical trial for treatments now considered old hat, and when they stopped working, there were other treatments in standard of care or more clinical trials... keep it up... it's inspiring.

Elt79
Elt79 in reply to JanetteR57

Thank you - I intend to! Even on the darkest of days I look for something positive, I know it’s there if I look hard enough x

Kayben21
Kayben21 in reply to Elt79

Wow, thank you so much for sharing your journey. That is amazing for you given your poor prognosis. And yes your post is very helpful and supportive. We are making the best of every day as much as we can.

Elt79
Elt79 in reply to Kayben21

One day at a time❤️

Thanks for posting your good news and offering hope. Since becoming involved in lung cancer research in early 2014 after my diagnosis in Jan 2011 (left upper lobectomy and 7cm tumour removed) I have seen so many changes especially in the treatments for non small cell lung cancer. I've also met survivors of lung cancer of over 20 years and had no idea they existed - some had stage iv before any of the targeted treatments and immunotherapy were available so never give up hope. even in terminal but treatable stage iv I've met patients told they had 'little time' who outlived such predictions by many years... and new treatments are being trialled all the time. what is now clear that using more than mode of therapy is superior to single treatment types that used be more common. immunotherapy seems to work really well for some but not for others and the research is still trying to understand more about why as it's the body's own immune system responding. researching how the body's own system kicks in after the treatment and holds the response for some time is also providing much more data. those I met who tried one treatment and it stopped working, by that time, there were other newer agents out there for them.... the pandemic has slowed a lot of research but it desperately needs to get going again for everyone's sake. hope you've celebrated your progress so far... long may it continue.

Stanley14
Stanley14 in reply to JanetteR57

My wife started pembrolizumab after one very successful Radiotherapy session for 3 brain lesions.

After one injection she broke out with blisters all over her body that subsequently became infected ,(TEN's) with over 50% coverage.

After 6 weeks in a Burns unit she is nearing recovery but still has serious lung problems.

The Oncologist says they are unable to offer any treatment but we don't accept that.

So in 2 months we've gone from a minor lung infection to double pneumonia (ie both lungs)

We await a final decision from the Oncologist but are resigned to him confirming his previous refusal to offer any further treatment, clearly immunotherapy is not an option but we were hoping there would be other treatments to control a very small growth.

Any suggestions would be greatly appreciated.

Many thanks.

Stan

Kayben21
Kayben21 in reply to JanetteR57

Thank you so much for sharing your story and information and knowledge from your involvement in research. Really really helpful and supportive

gosh Stanley14 that sounds quite an extreme action but do know that medics are unable to predict how a patient will respond to immunotherapy and although for those where it works it's good, there are a number of people who have severe side effects or for whom it does not work and some are ineligible (e.g. autoimmune conditions like Crohn's disease, lupus, some forms of arthritis) . However immunotherapy is a relatively recent treatment for lung cancer but being used more widely since covid 19 for those who might not have been clinically eligible under 'usual' clinical restrictions. there are also different Immunotherapy treatments dependent on the characteristics shown in the pathological sample. has the oncologist said they are unable to treat at the moment due to the inflammation in her lungs or ever? pneumonia is treatable but does take quite a while to recover from and can scar the lungs but lung cancer has other treatments - including chemotherapy and radiotherapy and surgery for those found early enough for removing it is possible. there are different types of radiotherapy used in lung cancer and although chemotherapy has been seriously disrupted by the pandemic (hence using immunotherapy more widely), I'd understood it was back in use where feasible and safe. is the primary cancer in her lungs and spread to her brain or did she have two separate primary sites (less common)? does she have a cancer nurse? it's worth asking them questions as sometimes we can hear somebody say 'I'm unable to offer anything else at the moment' and imagine this means permanently/ever which might not be the situation. hope you can get some clarity soon. good luck.

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