Keytruda Side Effects: bad joint pain

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boxhill
Posts: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Tue Oct 08, 2019 8:36 pm

Rob, I really want it out! My oncologist took it before the tumor board after I begged him to get their opinion, and was met with a resounding NO. They feel that it is too small and nonthreatening, even if alive, to take even the small risk of liver injury. Given that Keytruda took care of the lymph nodes, they don't seem to think this could be threatening. Apparently at least one of them said it might not even be a met. (I doubt that, personally, but I do think it is likely necrotic tissue now.)

It is right on the surface, about the size of a pencil eraser, and it wouldn't even require a wedge. To be sure of the margins, I would guess they would take about a square centimeter. But no. :(
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

Zod
Posts: 20
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Keytruda Side Effects: bad joint pain

Postby Zod » Tue Oct 08, 2019 10:06 pm

Two things:
1 The docs are presumably weighing risks (that is still a liver surgery, still invasive with some level of risk) versus the likely benefit.
2 Check with your oncodoc and/or other docs and strongly tell them about your knee symptoms if you haven't already. Good medical oncologists should be able to look at various options and/or refer to correct specialists. Make sure they are aware that this prevents exercise, and the top 2 to 4 other drawbacks it has for you getting better.

They need to balance knee versus cancer. I'm putting off a lot of minor stuff (teeth cleanings, getting a kidney stone zapped) because (A) they are less important, (B) they DO have possibility of screwing me up while under cancer treatment. I had an immune-suppressed friend get a teeth cleaning many years ago and she ended up getting a replacement heart valve because of it (she didn't know she was immune-suppressed until it was too late).

natelaugh
Posts: 74
Joined: Wed Apr 03, 2019 11:40 pm

Re: Keytruda Side Effects: bad joint pain

Postby natelaugh » Tue Oct 08, 2019 10:21 pm

boxhill wrote:Rob, I really want it out! My oncologist took it before the tumor board after I begged him to get their opinion, and was met with a resounding NO. They feel that it is too small and nonthreatening, even if alive, to take even the small risk of liver injury. Given that Keytruda took care of the lymph nodes, they don't seem to think this could be threatening. Apparently at least one of them said it might not even be a met. (I doubt that, personally, but I do think it is likely necrotic tissue now.)

It is right on the surface, about the size of a pencil eraser, and it wouldn't even require a wedge. To be sure of the margins, I would guess they would take about a square centimeter. But no. :(

My neighbor is on Opdivo and his cancer which is no longer cancer, had a small growing cancer at the top. His doc use a freeze gun, he describe it as a laser gun but shoot out cold freeze to kill his cancer. This didn't require opening him up to access his liver.

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

boxhill
Posts: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Wed Oct 09, 2019 10:29 am

Hi Zod,

I can assure you that my onc knows all about my pain issues. He treated it initially with a combination of steroids and time off Keytruda, but then referred me to the orthopedic people.

Yes, I understand that the risk benefit calculation apparently argues against removing my little node, even though the risk of liver injury is small. I get somewhat frustrated when I read about so many resections, but again, I am lucky in that my liver thing is apparently so much less threatening.

My doctor said that the type of procedure where they zap it with heat is out because of the position. (Apparently you need surrounding tissue to be a "heat sink."
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: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Sat Oct 12, 2019 10:11 am

I'm happy to report that on Thursday I had a steroid injection into my knee and it WORKED!! I also had a battery-assisted steroid patch to my hand, and that improved things, although not as much. Luckily, one can apparently have them pretty frequently.
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: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Sat Oct 19, 2019 7:24 pm

Well, the pain relief from the knee injection was short-lived. The pain came back big time after 4 or 5 days. Hand pain levels vary depending on whether I do anything with the hand, such as chopping up a couple onions. That will result in two days of elevated pain, as opposed to the regular baseline pain.

First, I was holding on for the injections. Since then I've been holding on for Celebrex, which my insurance rejected, as predicted, demanding additional info from the doctor justifying its use. Still waiting to get it.

I sincerely wish that every insurance company asshole who dreams up these rejection protocols have to suffer my pain and that of all of the others who are suffering because of them.

I also wish that they suffer the uncertainty and fear and disease progression and everything else suffered by those who are refused MRIs and other tests.

I have a scheduled infusion next week, and I doubt I'm getting it. I was barely able to convince them to let me have it last time. At this point I am disheartened, and I think I may have to go off Keytruda for a while, at least, because this constant pain is not supportable. Do I want to live like this? I've found myself wondering if it would really be such a big deal to be an opioid addict if the supply were assured. Wouldn't that be better?

It's ironic, because my status as a responder to immunotherapy puts me way out to the right hand side of the life expectancy curve of CRC patients.....if I can take it.
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: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda Side Effects: bad joint pain

Postby boxhill » Sat Oct 19, 2019 7:30 pm

Well, the pain relief from the knee injection was short-lived. The pain came back big time after 4 or 5 days. Hand pain levels vary depending on whether I do anything with the hand, such as chopping up a couple onions. That will result in two days of elevated pain, as opposed to the regular baseline pain.

First, I was holding on for the injections. Since then I've been holding on for Celebrex, which my insurance rejected, as predicted, demanding additional info from the doctor justifying its use. Still waiting to get it.

I sincerely wish that every insurance company asshole who dreams up these rejection protocols have to suffer my pain and that of all of the others who are suffering because of them.

I also wish that they suffer the uncertainty and fear and disease progression and everything else suffered by those who are refused MRIs and other tests.

I have a scheduled infusion next week, and I doubt I'm getting it. I was barely able to convince them to let me have it last time. At this point I am disheartened, and I think I may have to go off Keytruda for a while, at least, because this constant pain is not supportable. Do I want to live like this? I've found myself wondering if it would really be such a big deal to be an opioid addict if the supply were assured. Wouldn't that be better?

It's ironic, because my status as a responder to immunotherapy puts me way out to the right hand side of the life expectancy curve of CRC patients.....if I can take it.
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

natelaugh
Posts: 74
Joined: Wed Apr 03, 2019 11:40 pm

Re: Keytruda Side Effects: bad joint pain

Postby natelaugh » Sat Oct 19, 2019 8:18 pm

Have you try THC/CBD?

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone


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