KEYTRUDA Side Effects

[MJCA]

Hi All,

After failing docetaxel and pluvicto my MO put me on KEYTRUDA. Yesterday, 13 September, I experienced some very painful side effects. My neck was really stiff, which made moving it painful and difficult. The other issue was that all my joints and nerve endings felt like they were on fire. Moving any part of my body was severely painful. I did read that a stiff neck is a known S/E. And lastly, any body pain I was experiencing prior to KEYTRUDA, that pain has now magnified 10 times

I called Merck, who makes KEYTRUDA. They would not assist me unless they had a signed consent form from me. So, my questions are: 1. Can side effects show up one week after an infusion? 2. Are aching joints and burning nerves (pain at level 10+) a known side effect? 3. Is anyone aware of a med which would assist in relieving this severe pain?

I found that 2 Percocet 10/325 takes the edge off the pain. I called an advice nurse and was told to go to the E/R. I REALLY do not want to go to the E/R. I’m going to see how the Percocet works. Thanks for reading and for any assistance!

[Doggedness]

so sorry to hear this… can you call your doctor and ask him rather than the pharmaceutical company (although I thought that was a good idea)? I can’t help with anything antidotal though, because I don’t know anyone who has tried it.

[MJCA in reply to Doggedness]

Well now you do! LOL. I did message my MO. They told me to take ibuprofen. I reminded them I cannot take NSAIDs. I will try again Monday.

[Tall_Allen]

It sounds like autoimmune reactions. Notify your oncologist.

[MJCA in reply to Tall_Allen]

I guess I will let them know *again* on Monday. It ALWAYS seems that shit like this occurs over the weekend. That just adds another layer of frustration!

[Tall_Allen in reply to MJCA]

If you have any left over prednisone, it may help with those symptoms.

[MJCA in reply to Tall_Allen]

Nope. No steroids left. I did go to the ER on Sunday. I was given 10 mg morphine, then another 6 mg and another 6 mg. Over 5 hours, I was given 22 mg of morphine. Then I was sent home. Sunday I slept 12 hours and woke to the same 10+ pain I experienced in previous days. I have a video visit with the palliative doctor Tuesday. I got 15mg of oxycodone. I will see how that helps.

[Tall_Allen in reply to MJCA]

Maybe suggest a steroid to your doctor, in case you are experiencing an autoimmune reaction.

[MJCA in reply to Tall_Allen]

I speak with the palliative doctor Tuesday. Personally, I don’t like what steroids do to me. I’ll see what he has to say first.

[Pford62]

your an inspiration to us newbies at this . God Bless 🙏. This shit ain’t for Sissies

[MJCA in reply to Pford62]

Thanks. This pain is making me a sissy.

[4hisdelight]

So sorry to hear of your painful experience. Though I have not tried Keytruda, I have recently experienced the pain you describe. It came on after I messed up a refill for pregabalin (Lyrica); during the week I was without it, I also did not take the small dose of prednisone, which was prescribed together. The pain during that time is what you describe. There is no way for me to decide whether it was the withdrawal effects of stopping the pregabalin suddenly or the pain that the med was preventing. After a week, the refill went thru, and within an hour of taking the first dose, the whole world changed! It was all roses again. I have to admit that I'm an addict and simply have to have my fix.☹️

[MJCA in reply to 4hisdelight]

I took Lyrica many years ago. I asked to be taken off that drug due to what you described. If insurance didn’t cover it quickly enough I experienced withdrawal symptoms, such as a cold sweat and flu-like symptoms. What I am experiencing is definitely not withdrawal, but a very, very bad reaction.

[Apd66]

I tried and failed with keytruda this summer. I did not have the side effects you are having, I had much different. Some joint pain as you describe, but I developed a Pneumotitis that put me down and ultimately determined I needed to stop the treatement. It is hard to determine the cause of this, but could have been an SE or just that I caught a bug from elsewhere that caused it. Also, my PSA did not stop going up. I was told patience with Keytruda as it takes a while to be effective. I did 3 doses, about 4 weeks apart before stopping. PSA doubled each month. TA suggested Prednisone, which is what was prescribed for me, but my SE was not what you are experiencing, I was being treated for the pneumonia. Still on the prednisone and wheening very slowly off.

If pain is your main SE, a pain Managment program has helped me. If the treatment is working that is. All things considered, you can manage pain and control the cancer that is a win. The pain meds will slowly not be needed as you progress and the cancer becomes less is what I am finding. I am not following the keytruda but having pain as a SE to my current treatment is relatable. I am currently taking a PARP inhibitor that the first 2 weeks of treatment were as painful as anything in my life. Took a month or so get to a state where pain is managed and being able to even take a full dose of the medication. A delayed release pain medication taken for me 2x a day has my pain under control. Physical Therapy has helped more than anything. Keep moving, walking, whatever you can do and do not stop. Stopping while I was sick set me back considerably and is really hard to regain.

[Professorgary]

just a question, what problems do nsaids cause you? If it is thinning of the blood I can’t help but if it is gastrointestinal ask your doctor for a script for Celebrex. It is the only nsaid that does not block the cox1 enzyme which protects the gut.

[MJCA in reply to Professorgary]

Eight years ago I had gastric sleeve surgery. I dropped 206 pounds from 351 to 145. One of the precautions after the surgery is not to take NSAIDS.

[j-o-h-n]

To MJCA,

Apples and Oranges? As I've posted here on H.U. I was treated with Keytruda for a melanoma on my neck that metastasized in my lungs (not Pca related) and diagnosed as lung CA. That was back in February 2017 through January 2018. 16 Treatments/injections @ 3 weeks apart.

I had absolutely NO side effects and the treatments worked.

Good Luck, Good Health and Good Humor.

j-o-h-n

[MJCA in reply to j-o-h-n]

I’m happy it worked for you! Every body reacts differently! I would not wish S/E like these on anyone!

[Hotrod65]

I am finished with Keytruda/ prednisone combo on for 6 yrs and 58 infusions, I'm cancer free currently for 10.9 yrs since diagnosis..long term durable clinical remission and Historical status for stage 4 scNEPC, only given 3 months back then...side effects Yes. Handled all 58 infusions fine, I stopped producing cortisol for Adrenal function and blood sugar regulation and required the prednisone, which that combo has now caused open angle Glaucoma and surgeries to both eyes, that started about 3 yrs in, neuropathy fingers and toes but that's from the 2 years of chemo, I can't produce enough Testosterone on my own and self inject weekly. Yes, my rare NE status allows me T..bottom line is I'm still here, no physical limitations, and very good quality of life for a 70 yr old..I live a day at a time, I'm in unknown territory and producing the Research Data for many cancer foundations that have taken a special interest in my case.

[j-o-h-n in reply to Hotrod65]

Now ya talking Bro.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Soton4ever]

To answer your second question, this is some of the things that comes up under side effects:

The musculoskeletal system:

Very common:

Arthralgia, musculoskeletal pain

Common:

Arthritis, myositis, pain in extremity

Neurological:

Very common:

Headache

Common:

Dysgeusia, lethargy, peripheral neuropathy, dizziness

Also want to say I've been reading your posts, and wish you the very best of luck, and I hope the side effects doesn't last or at least doesn't hurt that bad 🫶

[MJCA in reply to Soton4ever]

Thanks. Time will tell how these S/E turn out. I’m getting to the point that I am living for the treatments and nothing else.

[Manilo]

I had some nasty reactions with pembrolizumab They begun a few days after infusion and lasted about a week.

I had the neck and pain to the head like if it was meningitis. Which is a common side effect.

Also fungi injections.

My Lymphocytes went down to only 0.3 (minimum should be 1.3). Lymphopenia is also a side effect.

Peripheral neuropathy in face and ears like burning.

Also some skin issues all over the body.

The oncologist told me to take Dexometasone but I waited some days and things calmed down.

You must see your doctor. The skin things are dangerous if toxic to the blood

[MJCA in reply to Manilo]

I have no skin issues; that may have been someone else. I just have musculoskeletal pain and possibly some nerve pain. I have a video appointment set up tomorrow with the palliative doctor.