Pre treatment appointment tomorrow!

Hi Mandrose,

I completed my 2 years of Pembrolizumab in September 2020 after a diagnosis of 3-6 months in September of  2018 and have not had any treatment for the last 2 years, I am now on watch & wait. I personally would have been able to keep working but because of the prognosis I took early retirement.

There are a few on this group on Pembrolizumab and I’m sure you’ll hear from them, I had no side effects for the whole 2 years apart from an itch that was easily sorted with moisturisers & antihistamines. The day after my very first treatment I slept through the whole day but that was it, although I put that down to the relief of treatment finally starting.

I wish you well with your treatment, keep us up to date with how it goes

Hi Mandrose.

I've had 5 lots of pembromizulab plus carboplatin plus pemetrexed. 

Some people sail through immunotherapy without any problems.

Unfortunately I'm not one of them.

They way I understand it is, immunotherapy supercharges your immune system which then attacks the cancer.

Unfortunately in some people it can also start attacking the liver, kidneys and thyroid.  In a  similar way to how autoimmune diseases work.

That's why they do regular blood tests before each treatment.  My liver results were off last time so there was a treatment pause while they put me on high dose steroids to get things under control. Before that it was my kidney and thyroid levels that were off, so I still had treatment,  but they adjusted the dose.

It can be a bit of a balancing act.

On the plus side, my latest scan showed significant reduction. So, immunotherapy is brilliant stuff - (when it sticks to attacking the cancer!)

I hope this doesn't worry you, but I think its best to have all the facts. Good AND bad.

All the best for your upcoming treatment x

Hi M I wish you well with your treatment love ….keeps us posted

Hi Mandrose,

I well remember how I felt when I was in your place. Just diagnosed, all I knew was that the initial plan for chemotherapy had been changed to immunotherapy because it had less side effects. I was terrified and wondering if I would live to see Christmas. Well, that was nearly five years ago. I'm still here, not feeling too bad, certainly nowhere near ready to start pushing up daisies.

The good news is that because pembrolizumab is horribly expensive they don't use it unless your cancer tests really suitable for it. If you get given it there's a good chance it will work. Your immune system will be doing the actual work of getting rid of the cancer, so anything that improves it is a good idea: sensible healthy diet, keep the booze under severe control, exercise regularly.

On side effects I'm one of the lucky ones, but I have worked at that - it didn't just happen by itself. I experimented with all sorts of things to reduce each side effect, one by one. Trial and error takes absolutely ages if its done right, one symptom at a time, testing one variable at a time. I think of it as a science project, like when I was at school, except spread over years that I never expected to see.

At your pre treatment appointment take a notebook with you and write stuff down. If you don't you'll have a hard time remembering everything accurately - and this stuff matters. Remember there's no such thing as a stupid question so ask away - their answers will be way better than anything you read on the internet.

Kind regards
Steve

Thank you Justme19, that’s great to hear! Fingers crossed I sail through it too x

Hi Harbelle, thank you for your honesty. It doesn’t scare me as it’s good to hear both sides! I’ve got psoriatic arthritis, which is an autoimmune condition, so I’ve been warned my joints can flair up. I’ve got everything crossed I tolerate it really well but need to be prepared in case that isn’t the case. Brilliant that you’ve had a significant reduction tho, that’s really positive news x

Hi StevePr, thank you for your message. Yep, I’m terrified at the moment as I think the word incurable keeps going around in my head! I didn’t realise it was so expensive so I feel even better that I’m having the treatment. I’ve a way to go before I’m healthy but I expect I will learn, especially if things don’t go as planned to start with. 
My sister was with me again today writing down everything I was told, as it’s impossible to remember everything. My questions were all answered but I’m sure I’ll have more as I go along. I’ve kept myself away from Dr Google & will only ever research things on McMillan or Roy Castle, as I’m easily scared lol. 
5 years is amazing, keep being strong & well x

HI Steve,

I've basically lived like a monk (or should that be a nun?) for months on end now, no sugar, no salt, tons of veg, no processed food, I excercise regularly, am in the perfect bmi range. I don't drink, I don't smoke, I do strengthening excercises plus cardio  regularly, I have good lung function, , no wheezing, coughing or shortness of breath..  I take my vit d, folic acid etc at the right times to optimise absorption  (even setting alarms) and yet, despite doing everything right, the immunotherapy STILL affected my liver, thyroid and kidneys 

At my last Onco appointment I asked him if there was anything further I could do to  minimise having an adverse reaction next time and he said - It won't make any difference what you do,  because its auto immune 

You say you've Worked At It. - 

   "On side effects I'm one of the lucky ones, but I have.  worked at that - it didn't just happen by itself"

Believe you me, theres nobody who's  worked at it more than I have.

I don't want ro criticise but I think its wrong to imply that those who've had toxic  reactions to immunotherapy or chemotherapy have had them because they haven't Worked Hard Enough.

Sometimes these things happen despite what you do or don't do 

Take care x

.

Hi Harebellle

When I said I worked at it and it didn't just happen by itself what I meant was this: After analysing my diet I experimented with taking out one item at a time for a few days to see the effect on my diarrhoea and kept at it until my symptoms reduced to what was acceptable to me. For itchy skin I experimented with the whole range of soaps, cleansers, gels, etc before I finally settled on baby shampoo for my shower and exfoliating all over in the winter months. For the productive (clear) cough I monitor the air quality where I am (air-quality.com) and experimented with HEPA air filters - they worked for me, jury is still out on the ions setting. And so on, all sorts of things - clothes and bedding (cotton or polycotton? cotton for me), exercise for energy (aerobic or anaerobic? mixture of both for me), bursitis in my shoulders (ibuprofen and mobility exercises mixed with low repetitions weight training eventually did the trick for me), etc etc. It wasn't so much about doing everything right, it was more about working to discover which right things were wrong for my crazy Keytruda immune system.

The original poster is just starting on the immunotherapy journey and there will most likely be side effects. In many cases, not all, they can be managed but the doctors rarely if ever advise on this or even mention that it might be possible. I was hoping to redress that balance.

I hope this clarifies what I really meant, thank you for the opportunity to reply, and apologise if my clumsy wording was misconstrued. I meant no offence and am sorry.

kind regards,
Steve

No worries Steve,

I'm just p**d off that despite my best efforts, I'm still having these problems. My worry is that If it keeps up they might take me off it altogether. 

We sound fairly similar.  We're both taking a proactive approach, which is a good thing.

Thanks for being so kind.x