I have been on Pembrolizumab as a first line treatment for Adenocarcinoma Stage 4 for 18 months, having treatment every three weeks at a dose of 200 mg.
My oncologist is suggesting I change to having treatment every six weeks and doubling the dose.
Is anyone else having the six weekly treatments?
I am interested to hear how this impacts on you? Does double dose mean double whammy side effect?
Thanks
Hi,
It’s good to know you were offered this as a first line treatment, I hope and pray it’s successful for you.
My husband had the very same treatment, but this was after a few months course of chemo and then radiotherapy, this treatment did not work for my husband.
He also had stage 4 adenocarcinoma.
However everyone is different, your dose maybe very effective for you... as generally going on immunotherapy as a first line may make a difference, I hope and pray it is effective for you.
Hoping you have a very long and healthy life.🙏😌
Hi I was moved to 6 weekly double dose last October after 12 months on 3 weekly. I was very apprehensive re side effects but to date no worse at all - I have upped my water intake which seems to help me.
Best of luck xx
Hello Llanigirl,
Pembrolizumab 200mgs can be given every 2 weeks, or 400mgs every 6 weeks. Your lung cancer specialist nurse will be able to talk over the reasons for changing the regime and how this is likely to affect you.
Kind regards
the Roy Castle support Team
I've just returned from the British Thoracic Oncology Group annual meeting in Dublin where the dose amounts and frequency of immunotherapy agents was a 'hot topic'. Giving immunotherapy as first line is quite recent in the UK (it used to be saved until after other treatments stopped working but now for some given up front to see what response the body can make if turned on by the treatment to kickstart its immune system) so dosage and frequency are still being 'tuned' to find the most effective but least toxic impact on patients. hopefully some of those on this regime will respond to you.
Thanks Janette,
I haven't had much response from posting this question, bit disappointing but actually I didn't expect to be overwhelmed because as you say it's just becoming a hot topic over here.
Not sure I want to be one of the early doors guinea pigs. I have got enough going on with side effects that no one is dealing with as things stand and with potentially seven treatments left till I reach the end of the road with Pembrolizumab I might resist the oncologists suggestion.
I'd be tempted to ask them some questions - what is the benefit of going twice as long but double the dose? what are the known side effects for patients like you? (i.e. not the clinical trial results as these tend to be different types of patients) what is standard of care for your type of tumour? will you have any additional monitoring if you have to wait 6 weeks between treatments compared to 3? All so you can weigh up the pros and cons to make an informed decision. Too often patients complain that they were unaware of side effects or impact of treatments. good luck whatever you decide to do with your treatment.
Having spoken to my oncologist on Friday she told me that they have decided not to alter my dose and frequency. I mentioned your response to her and she lit up. She says she knows you well.
Interestingly she told me that the treatment regime for all new patients coming onto Pembrolizumab will be changing...Starting with 200 mg every three weeks for the first six doses and then changing to 400 mg every six weeks, possibly every 12 weeks. She told me that they are going to run a clinical trial with patients having doses only every three months. This could be interesting. My cynical streak can't help but think that that will substantially reduce costs to the NHS.
Again thanks for responding, as ever so supportive and informative. N xx
Thanks for letting me know. It's good to know that I'm remembered within the lung cancer community 
Most changes to cancer treatment regimes are not related to cost reduction - especially with newer treatments, clinical trials usually involve generally 'fitter' patients and exclude several conditions so reported side effects may be minimal. However when a treatment is adopted into standard care or a different type of patients starts using the treatment, often more or different side effects are experienced - either due to contraindication of other medications for other conditions, less fit patients or some other aspect affecting their response. Clinicians are keen that patients are given the optimum effective dosage of whatever the treatment (whether radiotherapy, less invasive surgery, lower doses of systemic (i.e. whole system treatments that can damage other tissues) such as chemotherapy and immunotherapy). That's the reason behind such changes - either other countries have trialled and published results showing no less effect in terms of efficacy (i.e. non inferior) but fewer side effects to patients or if a clinical trial, this would be the aim of changing such treatments. If the same amount of treatment (i.e. double the dose) would be administered but in half the amount of visits, the main savings are (staff present when you have the treatment) but also halving the inconvenience to patients of having to travel, park and become anxious for each visit. Putting a value on these 'savings' is very difficult but as more people do well on newer treatments and try to return to 'life', personally I'd think fewer hospital trips would be helpful. I understand your cynicism about saving NHS money but for example, a minimally invasive operation can cost as much (more if done robotically) than the traditional open method and the same holds true for other treatments. I think most patients would be very shocked at the cost of cancer diagnostics and treatments and with newer treatments, it's likely patients could be on them for a long long time. Again, the long term effects on patients is little known for large numbers. I'm only thankful that paying for treatments (as is the case in other countries) is one less worry for our patients in the UK. Keep on being curious and asking questions of your team - being informed is one way of ensuring our views are considered at all stages and letting them know what matters to us. good luck whatever happens with your treatments. x
Hi , I have been having pembrolizumab every 6 weeks for the last since June 2019 apart from a bit of fatigue in the first week .I have found this better for me as I have less visits in and out of the chemo unit which always remind of how sick I have been and still am really .It is also less harsh on my veins. So that is my view good luck with future treatments.Diane
I know you're very interested in your own treatment and side effects which is a key part of advocating for yourself. Like you, I had a 'poor' patient experience and continue to bang the drum on behalf of other LC patients. Have you read 'the emperor of all maladies' by Siddharthur Mukherjee. It was published around the time of my diagnosis (Jan 2011) It gives a potted history of cancer and its treatments through the ages - especially poignant are the parts relating to children with cancer who were taken to the brink of death with early chemo treatments (and many died) to try and find out what the safe effective doses would be. To this day, very few clinical trials are allowed for children so doses (amounts/frequencies/order) have been refined over time. When my lung cancer was diagnosed, there were few treatment options so in one way, it's heartening we may have more choices in terms of type, order, frequency and dose but in another, all the more reason for studies to be done in a 'real world' population to understand the impact of treatments on more 'complex' patients. good luck.
Hi I was on Pembro every three weeks with good success. Was moved to 6 weekly and after the 2nd dose contracted immunotherapy colitis. Ended up on high dose of steroids that was in Sept last year. Came down on a reducing scale but after talking fully with my oncologist and having an up to date CT scan it was decided mutually for me not to return to immunotherapy as there was a high risk the colitis though not completely gone could return 10 fold. The immunotherapy had done its job regarding my cancer and all I have left from 3b is a small tumour just less than 2cm which is being maintained and managed by the immunotherapy. Apparently immunotherapy continues to work even after stopping as I now have inflammatory arthritis caused by immunotherapy . Back on steroids. I am so glad I was given the chance to be part of the Pembro trial without it I wouldn't be here today 1 and a half years later. It's a shame it doesn't work for everyone. Anyway that's my story of changing to 6 weekly not sure if the double dose caused the colitis or if it was my own body saying it had/has enough to manage on its own. Long may this last. I wish you well on your own journey as everybody's journey is different as are results. Take care. xx
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