Pembrolizumab/Keytruda severe side effect

[MacColl]

I have NSCLC - I'd felt very optimistic after my first treatment in September ....10 days later, I noticed that where I'd had a rasping noise in my throat for a few months, it had gone, and the following week, noticed that my breathing was improved and needed less ventolin etc to keep the airways open properly. My husband had also noticed these things.

The side effects were extreme tiredness, itchiness, psoriasis, slight feeling of flu with no temperature, and a bit of lightheadedness. All started to subside after two weeks. Nothing was too much to put up with though.

I had the second one 3 weeks later, and the same symptoms occurred, plus mouth sores. But by the following Friday, my throat had closed painfully and I couldn't eat ...tonsillitis? I got antibiotics and had a blood test the following Monday.

We had a phone call at 3am from the hospital to tell me liver function was 'a bit off' and to phone my GP in the morning. I phoned the oncology unit instead ...consultant wanted me straight in with overnight bag as the liver function was at a serious level.

The tonsillitis turned out to be a rather debilitating thrush, and antibiotics were the cause which I'd had for cystitis picked up in the first hospital back in June. The antibiotics were stopped and a different medication to clear the thrush prescribed, along with two different mouthwash and lip treatments for the mouth sores caused by the side effects.

All the while, they were trying to eliminate things that could cause liver damage, and that included lowering the dose of an asthma drug and ceasing paracetamol for pain. A liver scan showed no clots. By the middle of the week, it was apparent that the pembrolizumab itself was the culprit ...I was devastated.

After 8 days, I was allowed home on steroids ...this was last Tuesday 22nd Oct. Recovering, and have a CT scan next Tuesday evening. After that I'll no doubt get an appointment with the oncologist, and she'll decide if it's worth trying again with perhaps a weaker dose, or suspending it altogether - and that would really sadden me as I had excellent PD L1 of 70% for this drug being a success in halting or shrinking things.

So, here I am back at square one really - my asthma nurse noticed my breathing is better when we spoke yesterday, so yes, it may have actually started to work during those two treatments, but right now, I haven't any idea what will come next. It's known that I do get side effects from drugs, so dread to think what chemotherapy could do to me.

[2greys]

Hi MacColl. You have my heartfelt sympathy over the cancer. Without knowing what stage your cancer is at and whether it would be suitable. Can I suggest that when you see your Oncologist that you equire about SABR a new type of radiotherapy that can be eminently suitable for early NSCLC. I had this treatment 18 months ago and it is non invasive with no pain at all, in fact you don't even know it has been done. So far, so good, the tumour has shrunk and so far, stable.

Wishing you well and hope you can find an answer that will work for you.

[MacColl]

Thank you so much. I only found out in early July about this, and it came as a huge shock. I was being treat for worsening asthma that wouldn't respond!

I suspect that SABR was intended for me as I was supposed to be passed on to a different oncologist, and he actually uses SABR.

They then decided on one last test to investigate a tiny fuzzy 'bit' next to my thyroid to make sure ...it was a rather painful ultrasound guided needle biopsy, and the very next day I was called in and told that it was malignant after all, and that I'd be put forward to another consultant with a view to treatment with Pembrolizumab, and that the PD L1 markers were very favourable at 70%

My first treatment went ahead two weeks after and I did notice an improvement in that very area with my breathing 10 days later. I had such high hopes for that treatment. In fact, I did wonder that if the lymph areas did shrink, whether or not they'd go for the two tumours with SABR ...it was a notion of hope that I had.

Even my asthma nurse noticed yesterday that I'm breathing better than last time we spoke.

Seeing it was only after my second treatment that the liver damage occurred, I can't see it having shrunk them enough to proceed with anything like SABR.

More uncertainty until I've had the CT next week and get a result and way forward.

[2greys in reply to MacColl]

Fingers crossed for you.

[MacColl in reply to 2greys]

Thanks 2greys - it's appreciated.

[Izb1]

Hi MacColl, Im so sorry to hear of your troubles and hope they can find a suitable treatment for you. Glad to hear that at least your breathing a little easier. I wish you all the best x

[MacColl]

Thank you - I hope so too. X

[122bus]

Hi MacColl,

I am so sorry to hear about the cancer. My heart goes out to you. I had breast cancer in 2001. I have been asked if I can help you regarding Ventolin. Every morning and night I use Forstair Preventer and when my asthma is exacerbated I use Ventolin a lot of times and am usually prescribed Prednisolone steroids and antibiotics as well. They usually work well. The antibiotics often give me thrush and then I am prescribed Nystatin oral suspension for the thrush. I hope this is helpful and please contact me again if I can be of any help.

Praying for a swift recovery for you.

[MacColl in reply to 122bus]

Thank you very much - for the information and the good wishes.

The worsening and seemingly 'uncontrolled' asthma had masked the real reason for breathing worsening for some time, and by then I'd tried a number of asthma drugs that either produced side effects (I seem to get problems with a lot of drugs), or didn't help.

We'd finally settled on Ventolin on waking, one Seretide 50 at lunch time along with 400mg Uniphyllin, and 200mg at night with Ventolin again. More Ventolin through the day if needed - but after two episodes of breathing shutting down end of June, and first week July, I used it as an extra aide to keep airways open too, and only moved carefully.

After the second episode, 6 days in a hospital and everything including a heart attack had been ruled out and the real culprit found.

Tests and treatment at another hospital followed, and in mid September I began treatment.

It was the week after my second dose of Pembrolizumab that I became ill, and 8 days in hospital IV steroids (followed by tablets on day 6 to come home & reduce), and Nystatin for thrush, plus two mouthwashes for blisters were given in hospital, and the pharmacist cut the midday Uniphyllin to 200mg and replaced it with 2 puffs of Serevent twice daily - they tried to cut back anything safe to do so could affect the liver, so paracetamol was also ruled out. Being in remission with U. Colitis for 3 years, that means I can only take codeine for the time being.

I found that OK until yesterday evening when I noticed I was getting out of breath easily, so have upped the lunch time Uniphyllin to 400mg again and will tell my asthma nurse this week. It's OK now.

It seems a tumour is managing to cover the windpipe/part of the trachea thus cutting off air until repeated doses of Ventolin manage to allow enough air in to relax and sit still instead of fighting for air. That seems the best explanation that can be offered without actually being able to see it happen. It's very frightening as the first one lasted long enough to cause mild myocarditis straining to breathe.

I so wanted the treatment to shrink at least that one!

One thing I can say - the ward I was on is for the oncology patients with problems, and the staff from doctors down to housekeeping couldn't be better - they see the whole person and not a disease in a bed.

As such, I was given encouraging chats at 3am, a housekeeper finding things I could swallow to start eating again, and a domestic encouraging me not to give us as she was proof recovery of some sort is possible.

I've had many tests, some quite alarming (to me), but for some reason the CT scan this next Tuesday evening is making me feel quite stressed. Another needle after the very many had during the 8 days with liver trouble, and probably whatever comes after.

Seems that for once in my life I was a little lucky in that I had decent percentages for PD L1, and then have to get a severe side effect that could prevent me having the treatment again ....we'll see.

As I said, the good wishes from such lovely people here are so appreciated.

[122bus in reply to MacColl]

Hi MacColl,

Thank you! I am so sorry to hear of all your health worries. I am thinking about you and praying you get the very best of treatment very soon. Side effects are horrible aren’t they. You take medication for one thing and get a nasty side effect because of that. Then that has to be cleared up. I am here for you to talk to if I can be of any help. Sending hugs and love.

Take care and God bless.

[MacColl in reply to 122bus]

Thank you ....side effects I can handle to a degree, but if it's something bad enough that it that prevents the oncologist going on with the drug, it's a bit devastating if, as I suspect, it may have produced a good 'halting' effect.

[MacColl]

Two weeks after getting home on reducing steroids, I developed pneumonitis and was back in hospital on November 14th for 12 days on mixed antibiotics.

While in hospital, my oncologist visited and told me that she would not risk any further treatment with pembrolizumab. She did confirm that yes, it had been visibly working with only two doses, and it hadn't spread anywhere.

I'm devastated as I had immense faith in that drug, but she said the hepatitis was too severe to risk trying it again, and the pneumonitis was yet another of the severe side effects.

I became quite weak in hospital, and needed help to walk to the bathroom, and the antibiotics changed my appetite for usual foods to anything cool and mildly flavoured. Not ideal for building up muscles and body strength.

So here I am 8 days out of hospital and have a really unpleasant itching all over my body and limbs.

I've lost all the muscle strength/bulk in my legs, and walking has been difficult, as has the light headed feeling. Physio showed me exercises to do to regain the muscle bulk and also gave me a temporary walking stick to help with balance and upright walking.

Seems the drug can go on causing problems after treatment has been stopped. It's triggered the immune system into action, and is causing mayhem for me.

I have an appointment with my oncologist this Friday, and she says we'll discuss treatment options ...I'm not so sure there are many options though as she did say there'll be no more immunotherapy, I can't have surgery, or radiotherapy.

I hope she can make things seem brighter than they do at present. 6 months of tests and consultations, two treatments, two very debilitating ailments with stays in hospital, and very little to show for it.

I'd been feeling quite optimistic too.

I was rather worried that I don't feel as well as I'd hoped to at this stage, but read something here earlier explaining that pneumonia can take weeks to recover from properly, and breathing not being as good as it was is something that will improve.