Keytruda Side Effects: bad joint pain

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boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Keytruda Side Effects: bad joint pain

Postby boxhill » Thu Jun 27, 2019 4:00 pm

Well, I was sailing along happily for months with no apparent side effects except some sleepiness and maybe an occasional ache that traveled around, when BOOM! Stiff neck, joint pain in right thumb and left knee. Really painful. My thumb hurts constantly from the wrist up, with sometimes those electric stabbing pains. My neck is stiff and painful on both sides, and some mornings I wake up feeling like my shoulders, neck and head are a cage of pain. I seem to have very slightly twisted my left knee uncrossing it at church, of all things, and now I am hobbling and it is stiff and painful. Stairs are difficult, strictly one step at a time, with only the right knee allowed to bend. (One morning I had to go up on all fours...) And now it seems to be starting up in my left thumb and elbow...

I can't do anything. I can't really weed, dig a hole, take a walk, paint what needs painting, lift anything heavy. I used to bound into the infusion center, the most energetic and healthy-seeming person there. Today I hobbled in like a semi-crippled old lady. This has happened over a period of maybe 6 weeks since my thumb first started to ache after I made a big batch of rhubarb ginger jam. (I love it: crippled by church pew sitting and jam making!!)

Last week my onc postponed my Keytruda infusion, I hoping to have it after I see him tomorrow afternoon. We had talked about two different kinds of short steroid courses, and I think it is definitely time. Ibuprofen helps, but not enough to regain function.

I'm wondering if anyone else has had this degree of joint pain, and if so what you did about it? If I were not on Keytruda, I would have been to see my PCP weeks ago, who probably would have referred me to some kind of a specialist. Have people gone that direction? CBD oil/salve? Acupuncture?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

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Jack&KatiesMommy
Posts: 595
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Keytruda Side Effects: bad joint pain

Postby Jack&KatiesMommy » Thu Jun 27, 2019 4:36 pm

I (thankfully) have not experienced any sort of joint pain or really any pain at all on Keytruda in the year I have been on it. I have had a few weeks where I ached all over (as if I were getting a cold/flu) but that only lasted 5-6 days here and there. I am sorry that you are experiencing this.
Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

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henry123
Posts: 201
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda Side Effects: bad joint pain

Postby henry123 » Fri Jun 28, 2019 5:59 am

Hi ,
Sorry to hear about your complications.

While I do experience pain for some time after infusions, nothing like what you're describing.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Fri Jun 28, 2019 5:26 pm

He's continuing to hold off on Keytruda, prescribed one of those 7-day descending prednisone packs. He says I'll feel better tomorrow. I sure hope so.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Keytruda Side Effects: bad joint pain

Postby WriterGirl1969 » Fri Jun 28, 2019 11:11 pm

I haven't taken Keytruda myself, but Annie did (BeansMama) and I remember her telling me that her bones just ached terribly, especially in the fall after she'd been getting it for several months. She pushed the doctors and surgeon to set a date for surgery to avoid additional rounds due to the pain.

The good thing was, when they did surgery and removed the tumor in her liver, it was completely dead. She was cancer free.

So while I can't give you much by way of advice, but I thought I'd pass on the info. So sorry to hear you're going through this, and I hope you find something to alleviate.

Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Mon Jul 08, 2019 8:39 am

So I had the 6-day prednisone pack starting 6/28, and it gave me a few days of glorious low pain and high energy...but the pain came roaring back as soon as I was done. It is probably at a level about 10% less than pre-prednisone, though. Ibuprofen helps a bit, but I'm still semi-crippled. I think I'm going to call the doctor's office today and see what they suggest. This is not a good way to be living. I have to be able to at least get some exercise.

It's weird. I actually feel better than when on chemo at some basic level, but worse in others. I was comparing how I felt last July 4th and this, and honestly I felt better then. Wah, wah. Sorry for whining.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: Keytruda Side Effects: bad joint pain

Postby AmyG » Mon Jul 08, 2019 10:17 am

So, would Claritin help? I know it helps me when on neluesta. I have no idea if that works the same way!

Hope you feel better.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: Keytruda Side Effects: bad joint pain

Postby lovelife789 » Mon Jul 08, 2019 10:27 am

boxhill wrote:So I had the 6-day prednisone pack starting 6/28, and it gave me a few days of glorious low pain and high energy...but the pain came roaring back as soon as I was done. It is probably at a level about 10% less than pre-prednisone, though. Ibuprofen helps a bit, but I'm still semi-crippled. I think I'm going to call the doctor's office today and see what they suggest. This is not a good way to be living. I have to be able to at least get some exercise.

It's weird. I actually feel better than when on chemo at some basic level, but worse in others. I was comparing how I felt last July 4th and this, and honestly I felt better then. Wah, wah. Sorry for whining.


Whine! You have all the rights to! I would be frustrated too if I were you!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Thu Aug 01, 2019 3:49 pm

I've been on low dose prednisone for a number of weeks now, and while I still have pain in the specific areas, it is greatly reduced. I went in for a visit with the NP yesterday and found out that much to my surprise the oncologist wanted me to restart Keytruda, if I felt well enough. So I had an infusion yesterday. I'm to call in if anything untoward happens or the pain increases. I probably have about 10 days of prednisone left.

I was under the impression that he intended to wait longer, so I guess this is encouraging. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Wed Aug 21, 2019 8:50 pm

In today for another infusion. After a worrying flare for a few days upon resuming Keytruda last time, the pain subsided to a bearable level, and in fact gradually declined.

So now we are going for weaning me off Prednisone. I have about 12 pills left, and I'm to split them using my pill cutter, and take half of one per day until they are gone. I really want to be off it, because it wreaks havoc with my blood sugar and, I think, exacerbates my insomnia. It also gives my blood pressure a mild boost, and makes me feel generally a little weird. Keeping my fingers crossed that the pain remains bearable.

Post infusion event of the day: unbeknownst to me, my port kept bleeding and rapidly soaked through the bandaid, resulting in a large and growing splotch of blood on my cream-colored t shirt. My nurse came back in as I was leaving and gasped aloud. :) Rebandaging and futile rinsing/wiping ensued. I ended up going to the bathroom, taking off my shirt, and washing the front of it in the sink with the hand soap and semi-drying it with paper towels. Never a dull moment.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Wed Sep 11, 2019 6:58 pm

CT scan yesterday: stable. Lymph nodes still normal, no signs of any new cancer anywhere, tiny little liver thing still there and unchanged.

At this point the chances are that either it is dead or it wasn't a met in the first place. All, including my original surgeon, agree that it doesn't warrant surgery.

Does that mean I can consider myself NED? Who knows. It is frustrating, but obviously very, very, VERY far from the worst problem one could have.

Meanwhile, this is the first day I haven't taken any prednisone at all, and my entire leg hurts from the knee up. My oncologist is referring me to the sports medicine people, who may be able to address the knee inflammation directly.

The oncologist asked me if I wanted to stay on Keytruda, given the pain situation, or go off it and watch and wait. I said I'll keep on with it. I think I'll be taking Tramadol tonight, though.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Sat Sep 14, 2019 11:16 am

My doctor described the CT report to me as "basically stable," but Neither of us had actually seen it before my appointment. I read it online yesterday and noted that the radiologist actually said that the tiny liver thing appears reduced in size. Hmmm. Maybe evidence that it is/was a met after all? Everything else is completely normal. Except now she mentioned that I have a "small simple lipoma" on the anterior chest wall. What the heck? Nothing to worry about, I gather.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Tue Oct 08, 2019 12:12 pm

Pain has been increasing and getting steadier. Last week the NP had to be persuaded to allow me to have my infusioin. This morning the pain was so bad that I broke down and took my last oxycodone pill that I had been hoarding since April 2018.

Last Friday I FINALLY had an appointment with an ortho doc. He had x-rays taken of my knee and hand: no osteo arthritis. He also drained fluid from my knee, ultrasound guidance, and sent it for tests to eliminate bacterial infection and gout, and check for inflammatory markers. Everything negative. The numbing shot to my knee was BAD! The drain needle is a honking big thing that they have to push through cartilage. Not fun, even after numbing.

I am pushing for someone, anyone, to give me the proverbial cortisone shot into the joint(s). Could apparently give me relief for 12 weeks, or even longer. The non-oncology people seem to think I can easily wait for weeks. I explained to them and my PCP that this is not your average sore knee: this is a matter of whether I can stay on Keytruda or not, and thus potentially a matter of life and death.

I have GOT to be able to get some exercise. Right now I can only hobble, at best. As a T2 diabetic I can't afford to take more prednisone, which blows up blood sugar, and I really need exercise to control my blood sugar at the best of times. My eyesight is bad, and I am afraid I'm developing retinopathy due to high blood sugar from all of the drugs over the past year and a half. Opioids are out, for obvious reasons. I also need exercise to combat chronic depression. I can deal with the neck and shoulder pain and waking up with a headache in a rack of pain every morning. But I have to be able to walk.

In a lot of ways I feel incredibly lucky: despite being Stage IV, all I have is this 5mm or so subcapsular liver node. Keytruda knocked back the lymph nodes. The liver node might even be dead. Things could be so much worse! But this ongoing pain is just debilitating and depressing. I can't envision existing like this.

Has anyone ever had the cortisone shot treatment, and did it work well?

Thanks for listening to my venting.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Claudine
Posts: 121
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Keytruda Side Effects: bad joint pain

Postby Claudine » Tue Oct 08, 2019 4:20 pm

I'm so sorry you're in such pain, Boxhill. Yes, it's wonderful that Keytruda is working on your cancer, but quality of life is also really important. I hope you get that cortisone shot, or something that helps!
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Keytruda Side Effects: bad joint pain

Postby Rock_Robster » Tue Oct 08, 2019 7:32 pm

boxhill wrote:In a lot of ways I feel incredibly lucky: despite being Stage IV, all I have is this 5mm or so subcapsular liver node.

I’m really sorry you’re having to go through this boxhill - indeed I hope the treatments can help with the side effects soon!

Maybe a really stupid question - but given it’s so small and superficial, have they not discussed ablating or even wedge-resecting that solitary node?

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal


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