Immunotherapy

My husband did after his first immunotherapy, pembo( keytruda) he also had radiothetapy & zometa. And literally couldnt walk to the loo & was vomitting into a bowl. He had muscle aches, flu like symptoms. No appetite. This was after the first treatment, but the side affects have got easier. What he suffers from more is anxiety on scans & the long wait for results, to see if things are working ok etc the anxiety is getting worse with each scan.

I hope you side affects get better, speak to your onco team & see if they can help.

I wish you well x

Thank you.  I have to wait until a week on Tuesday for my Oncologist appointment so I was just wondering if it got any better.  If not I will consider stopping the treatment xxxx

I think you have to talk to your onco team. Some people have horrendous side affects & some dont, everybody reacts differently. They will advise & know what to do.

Good luck & wish you well x

Hi Anns,

Sorry to read you're having such a tough time of it. I was on Keytruda for 5 years so I learned a little bit about dealing with the side effects.

First off, the event chain is not Drug->Side Effect.
The event chain is Drug->Immune System->Reaction.

So the drug isn't directly responsible for the side effects, what it's doing is making the immune system do what it normally wouldn't. That's a good thing because the immune system wouldn't normally kill off the cancer. It can be bad thing because the "if it ain't broke don't fix it" rule is totally ignored as your immune system fixes what isn't broken.

Two ways to address this. One is the obvious to tackle the side effects. BTW drinking way too much water can cause hyponatraemia - look it up, it could be causing the effects you have listed? Fats/oils keep the mouth feeling moist without overdoing the water. Put lots of cream in your espresso .

The other way is to tackle your immune system to find out what triggers it and goes like a science experiment: what's in your bloodstream to make your immune system do this? Take something out of your diet, give your body a few days to settle, and then see if there's an improvement. If not then resume and go onto the next thing. Just one thing at a time. This can take what feels like forever. The only thing that gave me the patience to do it was that immunotherapy kept me alive long enough to do it. (Turned out it was strawberry Activia yoghurt that gave me the runs on Keytruda - TMI?)

Good luck and kind regards,
Steve

Hi Steve. Sorry to jump in on this post. My husbands on Keytruda. This week will be number 5 ( 6 weekly cycles). He was diagnosed stage 4 T3 N2 M1c in March, our worlds collapsed & he started his first Keytruda in April. It seems throughout this, you cant plan anything, as he changes from one day to the next. One day he's nauseas, another fatigued & then he can feel ok. Though with the nausea I'm sure its anxiety related, due to diagnosis & the scan waits, which take forever.

The constant throughout is joint pain, knees more so. We dont know if thats keytruda ( hes also on Zometa for bones) but his mobility is pretty poor now, due to knee pain ( he also had a stroke in 2018, but gained good mobility back after a long hard fight) but now a walk he used to do daily, is a thing of the past. I have asked onco is this caused by keytruda/zometa & they say zometa can give 48/72 hr pain & flu like symptoms. I have been trying to get answers from all docs re his ankle/knee swelling & pain for months & watched the decline in mobility. He now as to use a mobility scooter, which he hates. 

Can keytruda make arthritis worse? I just seem to be going round in circles trying to get answers. He has no cough, no chest pain etc his main problem is knee pain.

Hes had knee x rays recently to see if he as osteoarthritis. I know he had arthritus in all joints & several procedures on his knees over the years, but its like a major pain flare up that isnt shifting.

You seem very clued up on keytruda & although I've googled it, when mentioned to onco, they say no & see GP.

Thanks.

Hi Tilly,

Jump all you like and welcome .

Short answer: yes. On Keytruda I had bad pain in shoulders and elbows, milder in knees and hip. Doctors and scans diagnosed bursitis and "degenerative changes", with surgery offered (and declined). I managed the pain with mobility exercises to prevent losing range of movement and 400mg ibuprofen (NOT on an empty stomach!) before exercising. I also use elastic elbow and knee supports from Boots, they give no support at all but are great for keeping the joints warm. (Synovial fluid works just like any other oil.) Now I'm off keytruda the pain has gone away.

kind regards
Steve

Thank you for reply.

His problem is, due to having a stroke he cant take any anti inflammories. So his only pain relief is cocodamol & oramorph. Oramorph makes him sleepy & cocodamol just takes the edge off. So hes 24/7 pain & knees locking now. GP mentioned if things get worse consider knee replacements, he declined as hes enough going on.

I've googled knee supports on amazon, theres loads & want the best to help him. Synovial fluid, I have heard of this? I presume its rubbed in & then wear knee supports? He's been waiting over 6 wks for physio for exercises. He cant use his static bike now, as too painful.

I just dont know why onco are saying not keytruda related. So this week we're back in clinic & I'll mention again about knees & keytruda. I think hubbys worried too much " moaning" about knee pain & they'll stop treatment. I'm sure that wouldnt happen? But there as to be some pain relief he can take to keep him pain free & not sleep as oramorph does.

Thanks for your info, much appreciated.

Hi Tilly,

Sorry, I should have explained better. Synovial fluid is inside the joint, it's like gearbox oil and does the same job in the same way. Keeping it warm lets it work better and seep deeper into the nooks and crannies of the joint.

The joint supports I got were from Boots, cheap enough, and are perfect at keeping the joint warm and that fluid nice and runny.

kind regards
Steve

Ahhh ok. So the knee supports keep the knees warm/oil inside knee?

Hi Tilly,

Yes - synovial fluid fills the synovial cavity -

Coo - I didn't know I could do pictures on Macmillan

kind regards
Steve