Keytruda Side Effects: bad joint pain

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boxhill
Posts: 265
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 hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. 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 LNs shrunk to normal, Liver node stable
6/28/19 Keytruda paused, predisone for joint pain

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Jack&KatiesMommy
Posts: 587
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: 187
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

boxhill
Posts: 265
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 hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. 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 LNs shrunk to normal, Liver node stable
6/28/19 Keytruda paused, predisone for joint pain

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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: 265
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 hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. 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 LNs shrunk to normal, Liver node stable
6/28/19 Keytruda paused, predisone for joint pain

AmyG
Posts: 185
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 next step!

lovelife789
Posts: 139
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


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