Pain with unknown source

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Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Pain with unknown source

Postby Nor Cal » Thu Dec 08, 2022 3:10 pm

HI all -

Since June, 2022 I have been experiencing (~1-2 times per month) a strange pain which begins in the middle of my back right at the spine. Over the course of an hour or so it spreads around to my stomach, so that my whole lower torso is in pain. And the pain level is completely debilitating (a 10 on a 1-10 scale). It always starts while I'm sleeping, and typically lasts 3-6 hours. I've been to the ER three times with this. I've also had multiple Ct scans (chest, abdomen, pelvis), and MRIs (focused on my liver, but it captures quite a bit more). And the results are always the same - nothing. The only pain med that seems to have any impact is the dilaudid they give me in the ER.

My chemo during all of this is Xeliri (Xeloda and Irinotecan).

Does anyone have experience with something like this? We've tried to make connections to diet and day-of-cycle, but no luck. It's random as far as we can tell. Any insight would be much appreciated.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 56 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Pain with unknown source

Postby MadMed » Thu Dec 08, 2022 7:13 pm

I have pain in my lower back. It’s apparently attributable to radiation damage,the CT shows nothing, but the MRI does:
Suspected post-radiation changes of the sacrum.


It usually flares up when I’m laying on my back for a while.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Pain with unknown source

Postby Nor Cal » Fri Dec 09, 2022 10:05 am

Thanks MadMed. I'll check with my liver guy to see if he thinks this is post-treatment changes from the radioembolization.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 56 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2


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