Reducing Oxaliplatin

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polluxx
Posts: 50
Joined: Thu Jul 10, 2008 9:41 pm

Reducing Oxaliplatin

Postby polluxx » Sat May 16, 2020 1:38 pm

I just finished my fourth out of twelve cycle of FolFox. I’ve had more nausea than my oncologist expected, and I had sensitivities to some of the anti nausea meds that caused migraines, but it seems like we have tweaked those and Emend seems to keep it pretty well under control.

I’ve had burning/tingling in my hands since my second cycle, but this cycle, there is numbness in my hands and feet and lips even when I’m not touching anything cold.

At my appointment, yesterday, I asked my oncologist if I didn’t need to worry about neuropathy so long as it subsides between treatments. She said that she isn’t comfortable waiting longer to reduce my Oxaliplatin by 15% because I’m too young to have trouble even walking when I’m finished with treatment.

I feel conflicted. Of course, my goal was to get through all 12 cycles at a full dosage. At least,I thought I’d be able to do that for seven or eight cycles. After the fourth seems so early.

On the other hand, I’m looking forward to the possibility of less harsh side effects.

I’m already taking 600 mg of Gabapentin I also have Glutamine, but I haven’t been taking it.

Is there anything you can think of that might help me get through the eight cycles without having to reduce the Oxaliplatin even more?
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Reducing Oxaliplatin

Postby JJH » Sat May 16, 2020 1:56 pm

polluxx wrote:...Is there anything you can think of that might help me get through the eight cycles without having to reduce the Oxaliplatin even more?

You might ask your oncologist about IV Vitamin B12. My oncologist gave me an injection of Vitamin B12 once for peripheral neuropathy, but that was all. I don't know if it is a viable long-term solution. I only managed to finish 4 cycles of Xelox before I had to quit.

High-Dose Vitamin B12 as a treatment for Peripheral Neuropathy
https://www.naturopathiccurrents.com/news/high-dose-vitamin-b12-treatment-peripheral-neuropathy
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

polluxx
Posts: 50
Joined: Thu Jul 10, 2008 9:41 pm

Re: Reducing Oxaliplatin

Postby polluxx » Sat May 16, 2020 2:11 pm

Awesome! Thank you. I’m going to bring that up with her.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

Koreysue
Posts: 173
Joined: Mon Apr 30, 2018 2:36 pm

Re: Reducing Oxaliplatin

Postby Koreysue » Tue May 19, 2020 10:26 pm

Hello, I made it to 6 cycles full dose, then reduced for 4 more, then dropped completely at 10.
I really think that L- glutamine helped me. I would take it the day before each cycle, and each day during, along with the day after.
I dissolved it in water.
Hope that helps,
Koreysue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)

User avatar
horizon
Posts: 1567
Joined: Tue Apr 12, 2011 10:10 pm

Re: Reducing Oxaliplatin

Postby horizon » Mon Jun 01, 2020 12:13 pm

When I started getting neuropathy I immediately told my onc. He reduced my dosage and I didn't think about that as negative in any way. You doctor is the one that has studied the dosage and seen the effects of it over and over in other patients (along with the effectiveness at fighting the cancer). On the flip side I was just someone who knew how to use Google to look up oxi dosages. Neuropathy is no joke and can cause a lot of misery. I never regretted for one second for following my dr's recommendation to lower my Oxi dosage.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

boxhill
Posts: 636
Joined: Fri Apr 06, 2018 11:40 am

Re: Reducing Oxaliplatin

Postby boxhill » Sun Jun 07, 2020 11:28 am

I totally agree: if your doctor says it is time to cut out oxy, I'd do it. Permanent neuropathy is nothing to joke about.
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
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

polluxx
Posts: 50
Joined: Thu Jul 10, 2008 9:41 pm

Re: Reducing Oxaliplatin

Postby polluxx » Sun Jun 07, 2020 10:06 pm

The cycle with 15% reduction was much more manageable. I tried the glutamine and I feel like that helped as well. Thanks for the tips.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

User avatar
horizon
Posts: 1567
Joined: Tue Apr 12, 2011 10:10 pm

Re: Reducing Oxaliplatin

Postby horizon » Mon Jun 08, 2020 10:59 am

polluxx wrote:The cycle with 15% reduction was much more manageable. I tried the glutamine and I feel like that helped as well. Thanks for the tips.


That's great. Good luck with your treatment!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

Nordy1
Posts: 44
Joined: Tue Oct 02, 2018 11:45 pm

Re: Reducing Oxaliplatin

Postby Nordy1 » Tue Jun 09, 2020 11:02 pm

Please be cautious, I wanted to tough it out and while I told my Onc about the neuropathy, I did tell him it wasn’t bad. I finally started to be a little more open on how it was affecting me about round 9 and he cut it down significantly but we had to drop it on 10. I have permanent neuropathy in my feet and partial in my hands, I’m probably lucky I didn’t lose my sight as I was having problems but kept forgetting to tell them.

I think my problem was that I was focused on being strong and kept insisting to everyone that all was fine. Sometimes you need to step back and check yourself, it’s not a contest and we are all hoping for great outcomes.

Take care of yourself
Nordy1
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019


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