FOLFIRINOX mid treatment

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MadMed
Posts: 54
Joined: Sun May 02, 2021 5:52 pm

FOLFIRINOX mid treatment

Postby MadMed » Wed Jul 14, 2021 10:02 am

I was planning on sharing how treatment halfway though was going. Unfortunately, i don't think my experience is representative of how it usually goes.
I've have had 1 FOLFOX + 3 FOLFIRINOX and since the second treatment things went off the rails. It started with what looked like an ear infection, bad inflammation of neck lymph nodes.
This is a week after treatment, saw PCP and thought it was some kind of upper respiratory infection. My symptoms were high fever (101F), burning pain in the neck.
No matter, by treatment day, fever was managed with Tylenol, so we went ahead with the 3rd treatment. A week later things went from bad to really bad. The pain in the neck subsided replaced with chest pain, very high heart rate (110 in the morning), fever. The pain in my chest looked like a heart attack. That landed me in the ER then admission to the hospital.
ER doc did a CBC, ordered a culture, CT scan. He was completely mystified by the CT...it showed that my Aorta was inflamed and had thickened.
Fortunately for me, this amazing infectious disease specialist figured out the cause immediately. pegfilgrastim, the WBC booster, goes by neulasta/udenyca etc. was causing the inflammation. And one of the bad side effects is aortitis.

They did a bunch of other tests to be sure. ECho of the heart was clean, culture didn't find a single little bug, so infection was ruled out. I have been prescribed prednisone/lopressor which is heinous with side effects and my 4th treatment was delayed a week. Getting rid of the aortitis is taking some time, the treatment works for the most part but almost a month after the injection i am still struggling with BP and inflammation is still here.

The upside is that my 4th treatment a week late was a breeze. I guess not having high fever and acute chest pain helps!
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
Break before surgery scheduled 1/27/22

DCook54
Posts: 29
Joined: Sat Sep 05, 2020 10:12 pm

Re: FOLFIRINOX mid treatment

Postby DCook54 » Wed Jul 14, 2021 1:59 pm

Wow. What a way to get started! I am so glad you were in the right place for an accurate diagnosis. I'm sorry that happened to you, but I appreciate you sharing with everyone so that we are aware of that potential side-effect. I hope the remaining treatments are uneventful!! Let us know how you're doing!
54 year old mom of 3 and grand of 3
Stage IV colon- mets to lungs
KRAS G12V
NRAS WT
Dec 2019- partial colectomy adenocarcinoma 0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs positive crc mets Stage IV
August 2020 began 1/6 cycles Folfox
Nov 20 Completed 6 Folfox
Dec 20 Colonoscopy Clean, CTs clean
Dec 20 NED
April 21 Stable scans.one 4 mm lung nodule to watch
August 21 VATS 2 nodules both cancer

MadMed
Posts: 54
Joined: Sun May 02, 2021 5:52 pm

Re: FOLFIRINOX mid treatment

Postby MadMed » Tue Sep 28, 2021 9:19 am

Update after chemo. FOLFIRINOX was rough but paid off, tumor shrunk 80%, it is mostly T1 with a small T2 section, this was from T3. No metastatic cancer so far.
Going into radiation, I lobbied for Xeloda instead of the pump. My oncologist is excellent and had good reasons to recommend the pump, my GERD issues are a concern. We'll start with Xeloda and go from there. FIrst day of CRT was uneventful other than anxiety not knowing what to expect. I do feel the chemo even though it is only 1600mg a day. Hard to feel like the 8 chemo rounds were a win, there's still a long road ahead and recurrences and spread do happen, but it's positive so far which is good.

Forgot to mention about the aortitis, turns out it was resolved in a week by prednisone. latest CT shows some scarring but otherwise normal aorta. The remaining pain that landed me again in the ER in the middle of the 5th treatment was GERD! FOLFIRINOX had completely dried my oesophagus and stomach acid did a number on it. Felt exactly like the aortitis turns out something different. Now i take proton-pump inhibitor to manage the GERD. Good times, i have half a dozen pills i take daily now, never had any daily pills before this!
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
Break before surgery scheduled 1/27/22

MadMed
Posts: 54
Joined: Sun May 02, 2021 5:52 pm

Re: FOLFIRINOX mid treatment

Postby MadMed » Fri Nov 12, 2021 5:16 pm

Done with ChemoRad, the first 3 weeks were so easy I complained that maybe it was not working. oh boy, Week 4 started to be interesting, weeks 5 and 6 were agony.
Going #2 has been aptly described as shitting blades. I'm a week out of that and it's still a struggle. I have no idea if it helped or not but it sure did burn down there.
Another nasty surprise is the Xeloda side effect, i've had horrible neuropathy from Xeloda. I think it is slowly fading but it was probably the worst of it since it's constant pain.
I had one week of peace between chemo and chemo-rad, no pain, no issues. Maybe i'll be back to that soon.
I know Xeloda is famous for HFS, i didn't have that. No redness, no peeling, just nerves firing non stop and firing faster if I extend my arm.

I hope my immune system recovers promptly, i have detail surgery in Dec and then the big one end of January. Both oncologist and surgeon assure me that the cancer will be busy with the chemo-rad and won't spread. I guess we will find out soon enough.

I completely weened off prednisone now and that was a kick in the gut. No appetite or energy, i now need to nap mid afternoon. Hopefully that'll fade too.

Good luck everybody, fighting on.
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
Break before surgery scheduled 1/27/22


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