pembrolizumab - stopping after 2 years

[Shads71]

I am stopping pembrolizumab after being on it for 2 years, any advise on how it feels when you stop, side affects etc?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Shads71

Most people continue to feel well when their Pembrolizumab has stopped at its 2 year licensed use. For some, any side effects that you have had, you may find reduced and or disappear.

It has been found that even when some immunotherapy drugs have stopped, the effect it has had on the immune system continues to work in the body. There are some people who are doing well into year 5 or 7 since starting their Immunotherapy.

Hope you will hear from others in the forum who have had a similar experience.

There are some encouraging stories from those living with lung cancer which you can find in this link: roycastle.org/campaigns/lik...

If there is anything that you wish to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Llanigirl]

Hello Shads71,

Congratulations on reaching your two year mark with Pembrolizumab. I hope you did so with positive results and minimal side effects.

I note that the Roy Castle Administrator response below states that some people are still doing well 5 - 7 years after stopping Pembrolizumab. This immunotherapy has only been available in the UK since 2015 at the earliest and at that point was only available for advanced Melanoma, it wasn't approved for treatment of NSCLC for about a year after that so stating that survivors are reaching the seven year mark is a bit of a stretch.

I am in contact with survivors in the US where it was initially FDA approved in 2014 (so only in existence for 6 years total) and many of them are alive but significantly damaged by the long term affects of the therapy...Blindness, Deafness, Loss of mobility, Chronic Pain - (they often do not have a two year limit on treatment with it but are given it for life...Giant Money Spinner!)

Personally I got as far as treatment 28 before it got put on hold because of Covid 19 hospital restrictions.

Overall my tumours reduced by roughly 50% but this actually happened within the first three months of treatment and no further gains were made after that.

I have had no cancer treatment for 8 months. I had been seeing my Oncologist every three weeks but I haven't seen her for 10 months now because of Covid restrictions and I have only had about 4 telephone consultations since the beginning of March.... I have been for 4 CT Scans and an MRI but each report has had incongruities in the tumour measurements reported...one described as 'probably a typo' enlarged a subpleural nodule from 1.9 x 1.5 cms to 11.9 x 1.5 cms! I literally have no confidence that anyone is actually bothered about my cancer care anymore.

Since stopping the Pembrolizumab...cold turkey with no support I have had to just wake up each day to see what occurs.

I had had a really bad rash that was unresponsive to any kind of treatment with the exception of ice packs...that was also rubbish because I had to stay awake for a couple of days fighting the rash....which messes with the immune system and prevents healing progress etc. After I stopped the Pembro' this rash came back with a vengeance and lasted about a month, covering the whole of the front of my body/torso and has left the whole front of my body deeply scarred for life.

My general fatigue and cognitive dysfunction has gradually ebbed away...It took about seven months to start feeling alive. And praise the lord the insane insomnia has receded and I sleep like a baby again.

However, a whole load of other weird stuff has developed...

Spontaneous Bruising. I can literally go to bed fine and wake up with 10 - 20 bruises...usually no bigger than a 20p piece but sometimes up to 10 cms across. Also I feel like I have been beaten up and have random areas popping up all over my body that feel bruised but have no contusions. I have actually got out of bed and found the soles of my feet feel like they have been beaten with a bar while I was asleep and its incredibly painful to walk. These bruise sensations can last a couple of hours or a couple of days there's no logical pattern to them.

I have a lot of pain going on in my back, ribs and shoulder blades which could be related to the bruising but I really don't know, I live alone and I can't reach round to investigate.

Still suffering with giant explosive sneezes followed by streaming sinuses but whereas these sinus explosions might have lasted as long as seven ridiculous hours in the past they generally are spasmodic and last no longer that a few minutes now.

Blurred/Double/Triple vision and watery eyes....especially if I have spent 15 minutes reading... leaves me visually impaired sometimes for hours. I have had my eyes tested by an Ophthalmic Consultant who can find nothing wrong with them.

Strange neurological skin anomalies...for instance, if a strand of hair falls lightly on my upper arm the area surrounding the hair, the actual skin, starts to feel like its setting solid...if I touch it it feels ok but it seems my brain is sending signals to my nerve endings that my arm is turning to stone. The same thing has happened a few times when a nurse tapes on a blob of cotton wool after a blood test...the area around the tape radiating outward about 10 cms begins to feel like a stone. Recently this has started happening in my neck and creeping up into the skin of my jaw, up my cheeks, up across my ear and one side of my scalp. Again no discernible pattern or regularity of occurrence.

I have developed pain in the femur bones, again unpredictable and without rational pattern. I can be absolutely fine, lie down on the sofa to watch TV, try to stand up half an hour later and bang...my body behaves like a crippled 90 year old in certain situations now....getting out of a chair or off the sofa, getting into or out of a bath (this is actually very risky), climbing a small flight of seven steps...legs turn to lead halfway up, can't go on my hands and knees to pick up some cat toys because its an incredible struggle to get back up.

All that is Pembrolizumab. Two years ago I single handed managed between 9 - 14 country houses a week...one of them had 49 rooms...It was fast paced intensely physical full time work and I loved it. I was a never ill person.

Now, some days I can only manage to get a half full carrier bag of shopping up the seven steps to my flat if I do it by placing it on each step and pull myself up by the handrail. This particular long term side effect is well reported by many Pembrolizumab survivors.

Oh and I have put on about 6 1/2 stone despite eating like a bird. Pembrolizumab fried my thyroid. I can't get to the bottom of it but it might be a partial explanation for the metabolic stagnation.

I have and continue to discuss these issues with my Oncologist at every opportunity, she denies knowledge of them being a result of Pembrolizumab but more recently has started admitting that they really didn't know enough about the long term effects of the treatment and they don't know how to resolve these issues, or whether they will resolve over time.

I am constantly researching long term side effects on the endocrine system, the central nervous system, and the parasympathetic nervous system to see if any new papers have been written...Mainly by oncologists and immunologists in the US, I haven't come across anything in the UK.

I want answers and I want solutions because nobody informed me I would end up like this when they got me to sign the consent form for Pembrolizumab....makes a complete mockery of informed consent, truly horrified by my gradual understanding that the NHS routinely withholds the information you need to make an informed choice. That and the level of abuse in the form of gaslighting has left me with no trust in the NHS at all.

Examples of this gaslighting are;

'Well, a woman of your age...'

'You just have to accept that this is your life now'

and the inevitable 'are you getting any help with your mental health?'

Still it could be worse, I could have been coerced into giving consent for vaginal mesh implants!

The situation with GP's is even worse, they have no idea what you are talking about when you try to explain immunotherapy, for the most part they erroneously assume its the same as Chemotherapy. They are generally uninterested in beginning to understand the implications of the way immunotherapy changes (forever) the immune system and cannot comprehend the potential for the immune system to literally launch an attack on the body.

The upshot of this is that whatever you have to try to discuss with them they will always need to do an assessment of your symptoms through the filter of long term impacts of Pembrolizumab before they can even begin (if they can be bothered) to enter into any diagnostic process. If they don't do this there is potential for negligence, especially if you are bending over backwards to try to make the understand.

Add to that the fact that they generally see a cancer patient as a lost cause and a drain on their resources its a battle to get any sort of healthcare.

I know this reads very bleakly but I am trying to be as realistic as possible. There's always that old cancer adage, everyone is different. There is at least one Pembrolizumab group on Facebook along with a more general immunotherapy Facebook group.

If you have any questions I will do my best to help.

Look to the future, keep strong and stay safe.

xxx

[Shads71 in reply to Llanigirl]

Thank you for your reply. I have searched for information previously but your experience is the most I have heard, so thank you. I have also had pretty bad aches and pains whilst on Pembrolizumab and terrible insomnia. I wish you well for the future and will keep in touch. xxx

[Tiny8888 in reply to Llanigirl]

My husband has had 2 rounds and is in agony, his shoulder and left arm are a dead weight for a period of time.