Oxaliplatin Dosage - Call Off

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Blakeacw
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Joined: Thu Nov 05, 2020 12:24 pm
Location: Atlanta

Oxaliplatin Dosage - Call Off

Postby Blakeacw » Tue Dec 29, 2020 1:56 pm

Good Afternoon and Happy Holidays

Everyone on this board is informative and looking through the archives provides a range of perspective and assistance in navigating our battles here

I'm a stage 3 B - had the resection and doing folfox

I am on round 7 right now

At round 5 - they tweaked the dosage back to 88 percent - neuropathy for a few days in the cycle

At round 6 - they maintained the reduction at 88 percent - but neuropathy was greatly increased - especially the hands and lasted days 2-10/11 - They still hurt.

Fearful of permanent damage , I raised the alarm at my pre game for round 7

So for Round 7 - we are ) oxaliplatin and the rest as usual

Seems radical in a way but better to be safe than sorry on neuropathy getting worse

My understanding is we will evaluate and figure out round 8-12 when I return from round 7 at that time.

Would love to hear some similar experiences

Thanks

Robert
Colonoscopy 8/5/2020 - cancer diagnosed 9cm mass
Colectomy 8/24/2020 - successful - all margins cleared
2 of 16 lymph nodes -m1 tumor deposit
Pt3 n1b

Port a cath installed 9/4/2020
Folfox - 12 rounds

Round 1 - 9.28
Round 2 - 10.12
Round 3 - 10.26
Round 4 - 11.9.20
Round 5 - 11.23.20 OXA - reduced to 88% of dosage due to neuropathy
Round 6 - 12.14.20 - Deferred 11/30
Round 7 - 12.28.20

CEA
8.6.20 - 8.70 Prior To Surgery
9.4.20 - 3.00 Post Surgery

Nor Cal
Posts: 7
Joined: Sun Dec 06, 2020 8:18 pm

Re: Oxaliplatin Dosage - Call Off

Postby Nor Cal » Wed Dec 30, 2020 12:24 am

I had about 5 weeks off between cycles 8-9, and that seemed to help. Can't offer much to help aside from exercise targeting those areas, and some people swear by sucking ice chips during infusion. Worth reading about anyway.
Dx June 2020, stage IV, w liver mets. M, age 50. Left lobe near complete takeover by tumor. Multiple mets on right side. Right-sided colon tumor. BRAF mutation. CEA 39.5
7-11/20 8 cycles FOLFOXIRI (plus Avastin cycles 2-6)
CEA 2.9
12/20 radioembolization (right lobe)
12/20 1 cycle FOLFOXIRI
1/21 chemoembolization (left lobe)

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ginabeewell
Posts: 473
Joined: Wed Oct 24, 2018 10:30 am

Re: Oxaliplatin Dosage - Call Off

Postby ginabeewell » Wed Dec 30, 2020 12:41 am

I hope someone more knowledgeable than me weighs in, but I recall asking a similar question when they cut my Oxi off after 8 rounds. At the time, one person told me that the new FOLFOX protocol only calls for 6 doses of Oxalilplatin; the returns are significantly diminished for later doses - and don’t make sense when compared to the risk of permanent neuropathy.

I will also share that Dr K was unwilling to re-introduce it for me after quite a long break. She felt that I had 8 doses and experienced neuropathy and that was reason enough to move on!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

I_will_fight
Posts: 51
Joined: Mon Jun 29, 2020 3:38 pm

Re: Oxaliplatin Dosage - Call Off

Postby I_will_fight » Wed Dec 30, 2020 4:05 am

I am by no means an expert, but I can tell you my own experience:

I had 4 rounds of CAPOX only, but please note that each CAPOX round delivers a higher Oxiloplatin dose than the equivalent FOLFOX (CAPOX 130 mg/kg vs. FOLFOX 85 mg/kg)

I applied ice packs to my feet, hands and tonge since round 1.

In round 2 I improved the technique for icing tongue and mouth. By placing ice shards in my mouth let them melt, discard them in a bucket and repeating...

I am confident this has helped me having relatively minor neuropathy effects so far.

I realize you are almost done with your chemo, so this piece of information may be a bit late (sorry) in any case no harm in doing a bit of google research and ask your healthcare professionals.

Good luck.
46 yo male Spain
06/20 - 6 cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surgery, 13 cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Oxaliplatin Dosage - Call Off

Postby Claudine » Wed Dec 30, 2020 11:36 am

Two years after 6 rounds of Xelox, my husband has permanent neuropathy in his feet (his hands recovered, fortunately). You are wise to pay close attention to it!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

roadrunner
Posts: 90
Joined: Sun Jan 12, 2020 8:46 pm

Re: Oxaliplatin Dosage - Call Off

Postby roadrunner » Wed Dec 30, 2020 2:01 pm

I did 8 rounds of FOLFOX and I believe only 6-7 with Oxaliplatin (due to in-flight adjustments). It had massive effects on my tumor, but most seemed to occur in the early part of treatment. My oncologist, who is very conservative and strives to deliver maximal doses of the medications in a curative situation, pulled it when I started reporting mild neuropathy on dose 7 or so. And he was right as to the neuropathy — that was 4 mos. ago and the neuropathy is still there, maybe a hair worse. Now mind you, in my case it’s wholly tolerable, but I’m grateful he handled it that way.

I haven’t done a deep dive, but I recall seeing lots of literature on FOLFOX that suggested 6-8 treatments may be regarded as optimal in the future, and I think many, if not most, practices are going to 8 in many situations, where 12 used to be the general standard. (But that’s just an impression, others may have different views.)
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

kandj
Posts: 306
Joined: Sun Sep 27, 2015 11:29 am

Re: Oxaliplatin Dosage - Call Off

Postby kandj » Wed Dec 30, 2020 6:04 pm

My husband is the zebra apparently. He had 11 doses of FOlFOX with he Oxaliplatin before he had neuropathy in his throat that was causing swallowing and choking issues. He went off that, then had a recurrence a year later and got another 6 rounds of FOLFOX before they dropped the Oxailplatin. His only persistent neuropathy is in his feet and he says it is fairly mild. The second time he started it again, the neuropathy came back on much quicker. He's had over 90 rounds of various forms of chemo though, so he's experienced just about all it has to offer. Right now its irinotecan but no 46 hr 5FU bag. He's pretty happy not to have the Oxaliplatin or 5FU. Irinotecan is no picnic either though. Xeloda was by far the easiest for him to endure.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Oxaliplatin Dosage - Call Off

Postby PainInTheAss » Thu Dec 31, 2020 1:23 am

Hello! I haven't been on here in quite a while. I'm not sure what made this site pop in my head just now.

I was terrified of Oxi because of the risk of permanent severe neuropathy. My oncologist only did 6 rounds (I think), and my research showed that some trials included data from patients who only completed one round. So, just one round makes a difference. I was a 3c and as close as you could get to a stage 4 (I had a lymph node light up near my sacrum that could not be removed via surgery). Like other posters mentioned, the extra rounds cause more side effects than are worth the extra benefits. I've even seen people only do 4 rounds.

I also remember finding that neuropathy can start at any time up to 3 months and there was something significant about the two year mark. So, you have to wait to see how bad it will be. From there, it gets better. My neuropathy and general muscle cramps got a little better every year. I still have a little in my feet, but hardly noticeable. The muscle cramps were definitely worse than the neuropathy. I was very happy that it improved over time, but I did not see the improvement for a long time, probably 4 years. I'm pretty much back to normal, as far as muscle cramps and stiffness goes.

I noticed that I could think further and further into the future each year that passed. The idea of reaching 85 doesn't seem out of the question now. Chemo was definitely worth it. I don't think I'd still be here without it. But it sucks!!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Blakeacw
Posts: 6
Joined: Thu Nov 05, 2020 12:24 pm
Location: Atlanta

Re: Oxaliplatin Dosage - Call Off

Postby Blakeacw » Sun Jan 03, 2021 11:10 am

Thank you everyone for your responses - extremely helpful and provides some perspective for me moving forward.
Colonoscopy 8/5/2020 - cancer diagnosed 9cm mass
Colectomy 8/24/2020 - successful - all margins cleared
2 of 16 lymph nodes -m1 tumor deposit
Pt3 n1b

Port a cath installed 9/4/2020
Folfox - 12 rounds

Round 1 - 9.28
Round 2 - 10.12
Round 3 - 10.26
Round 4 - 11.9.20
Round 5 - 11.23.20 OXA - reduced to 88% of dosage due to neuropathy
Round 6 - 12.14.20 - Deferred 11/30
Round 7 - 12.28.20

CEA
8.6.20 - 8.70 Prior To Surgery
9.4.20 - 3.00 Post Surgery

User avatar
ANDRETEXAS
Posts: 653
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Oxaliplatin Dosage - Call Off

Postby ANDRETEXAS » Sun Jan 03, 2021 2:26 pm

I had very few side effects that would have kept me from doing all 12 rounds of oxi. I was fortunate.

My oncologist and I discussed my side effects thoroughly 30 minutes before each round. It was after each of these meetings that we made the decision to move forward with FOLFOX as my plan was originally developed.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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horizon
Posts: 1593
Joined: Tue Apr 12, 2011 10:10 pm

Re: Oxaliplatin Dosage - Call Off

Postby horizon » Tue Jan 05, 2021 3:33 pm

I can't remember details but several rounds in I started experiencing neuropathy. I immediately told my onc and he lowered my dosage. Didn't happen again. I finished the 6 months and don't have issues today.
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?

Ehut
Posts: 230
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Oxaliplatin Dosage - Call Off

Postby Ehut » Tue Jan 05, 2021 3:42 pm

FOLFOX was replaced with FOLFIRI for me at cycle 6 or 7 due to an allergic reaction to the Oxaliplatin. You may want to look into FOLFIRI (Irinotecan instead of Oxaliplatin). My Onc said the 5FU does about 90% of the work anyway, so removing/replacing it shouldn't make a huge difference.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 8+ years and counting!

Gloriamazz
Posts: 87
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Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Oxaliplatin Dosage - Call Off

Postby Gloriamazz » Wed Jan 06, 2021 5:42 am

Hi,

The threads I have been reading are very interesting: my first line of treatment was Folfox started 10 months after I was diagnosed in July/2018 with a Malignant Neoplasm 3 cm, Adenocarcinoma, Stage 2T2N0... Surgeon stated with Stage 1 and Stage 2 no chemo or radiation surveillance recommended and CE A normal: surgery was (laparoscopic resection) no chemo for 10 mos. as stated above, but I had antibiotics for fissures and abscesses.

In March 2019, had a CT:
found2 lung nodules in the mm: possible recurrence in the lungs. April 2019, Hyper Dense leision 1.8 x 1.8 cm: local recurrence in pelvic area, along sciatic nerve.
sciatica nerve.

May 25, 2019 FINALLY TOLD TO FIND ONCOLOGIST.
primary doctor recommended Oncologist with Cleveland Clinic this time diagnosed as Stage 4. Had a couple folfox/irinotecan
Treatments. Stopped Folfox July 8, 2019 <Started Radiation for 5 treatments 7-22/7-29 every other day.>

August 12, 2019 resumed Line-1 chemo routine. Experienced allergic reaction <aborted Folfox regime>also developed ulcerated toe went to podiatrist several weeks, toe getting worse sent to Cleveland Clinic Wound Dept. Note: not sure if didn’t get upset and it was a nervous reaction that caused me to be sick chemo.
My Oncologist conservative won’t go back to First Line Treatment.

2nd line of treatment Irinotecan, FU5 had 12 infusions and 3 CT, First CT some shrunk very little; 2nd scan some nodules grew a little sounds like all are centimeters now. 3rd scan nodules grew and have satellite of new ones; Dec 14, 2020 taken of irinotecan,

Told going on Regorafenib <last resort drug not prescribed, but very little; I suggested run tissue test as pathology report stated
Only 2 tests were taken. This drug history for 25% of patients.

I have reservations about this drug and going to get a second opinion and look for trials. I sincerely think my dr is too conservative.

I have Neuropathy from Diabetes but it’s livable I would not stop treatment over it. I have had it for 10 years. When it acts up I put my feet in cold water and after rub them with Vicks




,
June 2018 Colonoscopy
2.6 adenocarcinoma
8/8/18 APR
Colostomy
March 19 CT 2 lung nods
April 29, 2019 Pelvis leision 1.8 x 1.8 cm
7/22 - 7/29/ 2019 5 radi
no chemo 10 month
6-10-19 Folfox, Oxill
2nd Irinotecan , Folferi, FU5
12/14/20 Aborted Folferi
12/14/20 CT tumors grow and new ones
Resume chemo Jan/4/2021 Stivarga using pill
12/14/2020 Folferi not working lung tumors grew and have cluster of new ones
break going on pill drug Jan 2021

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Green Tea
Posts: 290
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Oxaliplatin Dosage - Call Off

Postby Green Tea » Wed Jan 06, 2021 2:52 pm

Gloriamazz wrote:...
I have reservations about this drug (regorafenib) and going to get a second opinion and look for trials. I sincerely think my dr is too conservative...

Hi Gloria -
If you are going to get a second opinion from an oncologist, maybe you could get one at a different institution there in Ohio. Here is a list of the top cancer hospitals in Ohio. Perhaps someone here could suggest a nearby cancer center for you to try.

Best Hospitals for Cancer in Ohio
https://health.usnews.com/best-hospitals/rankings/cancer/ohio

Gloriamazz
Posts: 87
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Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Oxaliplatin Dosage - Call Off

Postby Gloriamazz » Thu Jan 07, 2021 3:21 am

Gloriamazz wrote:Hi,

The threads I have been reading are very interesting: my first line of treatment was Folfox started 10 months after I was diagnosed in July/2018 with a Malignant Neoplasm 3 cm, Adenocarcinoma, Stage 2 T2N0... Surgeon stated with Stage 1 and Stage 2 no chemo or radiation surveillance recommended and CE A normal: surgery was (laparoscopic resection) no chemo for 10 mos. as stated above, but I had antibiotics for fissures and abscesses.
Was in pain with them for over a yr. was on opioids and patches; took a donut if I went anywhere and at home. Finally pain lessened and got off of opiods, want to say in February 2020.
In March 2019, had a CT:

Found 2 lung nodules measuring mm: possible recurrence in the lungs. April 2019, Hyper Dense leision 1.8 x 1.8 cm: local recurrence in pelvic area, along sciatic nerve. (I often wonder if dr would have suggested chemo if cancer would have Matastisized to pelvis and lungs)

May 25, 2019 FINALLY TOLD TO FIND ONCOLOGIST.
primary doctor recommended Oncologist (wonder why surgeon didn’t recommend chemo at this time, now it is Metatasti. Cleveland Clinic this time diagnosed as Stage 4. Now had an Oncologist and a couple folfox/Oxaliplatin treatments.

Stopped Folfox July 8, 2019 <Started Radiation for 5 treatments 7-22/7-29 every other day.> radiation killed the super deep tumor and knock on wood no side effects as of 1/6/2021

August 12, 2019 resumed Line-1 chemo routine. Experienced allergic reaction <aborted Folfox regime>also developed ulcerated toe went to podiatrist several weeks, toe getting worse referred to Cleveland Clinic Wound Dept. Note: not sure if didn’t get upset and it was a nervous reaction that caused me to be sick
chemo. With the toe I should have moisturized.
My Oncologist conservative won’t go back to First Line Treatment.

2nd line of treatment Irinotecan, FU5 had 12 infusions and 3 CT, First CT some shrunk very little; 2nd scan some nodules grew a little sounds like all are centimeters now no longer millimeters 3rd scan nodules grew and have satellite of new ones; Dec 14, 2020 taken of irinotecan,

Told going on Regorafenib <last resort drug not prescribed, but very little; I suggested run tissue test as pathology report stated
Only 2 tests were taken that is one in four patients; This drug history for 25% of patients have some success. It is written it gives a few Moore weeks of life if you can tolerate it. If not you are taken off

What was MSI Status on tumor
Was was KRAS Mutation
What was BRAF Mutation

I have reservations about this drug and going to get a second opinion and look for trials. I sincerely think my dr is too conservative.

I have Neuropathy from Diabetes but it’s livable I would not stop treatment over it. I have had it for 10 years. When it acts up I put my feet in cold water and after rub them with Vicks




,
Last edited by Gloriamazz on Sun Jan 10, 2021 2:32 am, edited 1 time in total.
June 2018 Colonoscopy
2.6 adenocarcinoma
8/8/18 APR
Colostomy
March 19 CT 2 lung nods
April 29, 2019 Pelvis leision 1.8 x 1.8 cm
7/22 - 7/29/ 2019 5 radi
no chemo 10 month
6-10-19 Folfox, Oxill
2nd Irinotecan , Folferi, FU5
12/14/20 Aborted Folferi
12/14/20 CT tumors grow and new ones
Resume chemo Jan/4/2021 Stivarga using pill
12/14/2020 Folferi not working lung tumors grew and have cluster of new ones
break going on pill drug Jan 2021


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