Oxaliplatin desensitization protocol

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KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Oxaliplatin desensitization protocol

Postby KElizabeth » Wed May 10, 2017 1:27 pm

I am looking for stories and experiences with oxaliplatin desensitization.
I'm taking a break from the fury after my next treatment and I haven't found a trial that will take me yet so It's back to old haunts for me.
I suggested to my oncologists that we try oxaliplatin again with desensitization and to my surprise they were willing to make a plan of attack for me even though this is not something they have done. We're all set but I'm freaking out because I don't know what to expect. Will the side effects be the same same regular rate infusion?
Also...
It's been 3.5 years since I had any oxaliplatin and the minimal neuropathy I experienced has completely resolved. Will I start at zero, or will some bioaccumulated platinum possibly cause neuropathy to start in sooner?
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Oxaliplatin desensitization protocol

Postby Lee » Wed May 10, 2017 5:46 pm

Are you talking about an allergic reaction like hives to Oxaliplatin or something else?

There have been a few people on this board who did go through an Oxaliplatin desensitization with success (hives type reaction). Not totally sure what they did, butt I believe they were given the Oxaliplatin in a hospital setting and given several drugs to counter act the bad side effect.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Oxaliplatin desensitization protocol

Postby KElizabeth » Wed May 10, 2017 9:22 pm

Lee wrote:Are you talking about an allergic reaction like hives to Oxaliplatin or something else?

There have been a few people on this board who did go through an Oxaliplatin desensitization with success (hives type reaction). Not totally sure what they did, butt I believe they were given the Oxaliplatin in a hospital setting and given several drugs to counter act the bad side effect.

Good luck,

Lee


Yes. I had an allergic type reaction but it was shutdown so quickly it's difficult to say quite what would have transpired. I have since had weird reaction to other things and been fine without intervention.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Oxaliplatin desensitization protocol

Postby Lee » Sat May 13, 2017 5:33 pm

KElizabeth wrote:I
It's been 3.5 years since I had any oxaliplatin and the minimal neuropathy I experienced has completely resolved. Will I start at zero, or will some bioaccumulated platinum possibly cause neuropathy to start in sooner?


By the fact that you had it before and already in your body, I would "assume" you will not be starting a zero. Again, this is just an assumption. That would be a good question to ask your Onc.

All the best, hope it is successful for you with little side effects.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Oxaliplatin desensitization protocol

Postby michellecairn » Sun May 14, 2017 12:04 pm

KElizabeth,

I don't know if this will help you, but I just went through a desensitization with Irinotecan on March 30, 2017.

My first chemo (back in November 2015) was supposed to be FOLFIRINOX (5-FU, Leucovorin, Oxaliplatin, and Irinotecan). They ran the Leucovorin and Irinotecan together and my tongue swelled up. They stopped the Irinotecan, and finished the Leucovorin. They tried the Irinotecan again, but my tongue swelled again. So the Irinotecan was pulled from my treatment, so I finished the rest of the chemos just getting FOLFOX.

After my immunotherapy failed, my onc wanted to try irinotecan again, so she said we had to desensitize me.

Basically what they did for me was had me admitted to the Intensive Care Unit at the hospital, and gave me a longer than normal infusion of the irinotecan in various amounts. From what I am told the "normal" infusion for Irinotecan is 2 hours. They split the infusion into 4 separate bags, and ran each bag over an hour - for a total time of 4 hours. I had asked how much of the drug was in each bag, and it was something to the effect of 30 mg in both the first and second bags, 60mg in the third bag and 230 mg in the fourth bag.

They had every available medication at my bedside ready to go in case I had another reaction to the drug. I also had a nurse that was present at my bedside the entire infusion. I didn't have any allergic reaction thankfully, but I did get some of the instant side effects that are normal (mouthwatering, and the diarrhea urge). They gave me some Atropine to combat those side effects.

After that infusion, I now get the Irinotecan at the cancer center where I usually go, but they still run the whole thing over a period of 4 hours. I'm also receiving Erbitux and pre-meds too, so my total infusion time is 5.5 hours. For my premeds I receive 8mg of Dexamethasone, 0.25mg Aloxi, 100mg Solu-Cortef, and 25mg Benedryl.

Best Wishes to everyone!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Oxaliplatin desensitization protocol

Postby mariane » Sun May 14, 2017 3:38 pm

I had some issues with Irinotecan as well. I had problem with my speech. For about an hour I was hardly able to talk and sounded weird. MSKCC nurses said it happened to some patients.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Oxaliplatin desensitization protocol

Postby KElizabeth » Sun May 14, 2017 11:36 pm

michellecairn wrote:
After that infusion, I now get the Irinotecan at the cancer center where I usually go, but they still run the whole thing over a period of 4 hours. I'm also receiving Erbitux and pre-meds too, so my total infusion time is 5.5 hours. For my premeds I receive 8mg of Dexamethasone, 0.25mg Aloxi, 100mg Solu-Cortef, and 25mg Benedryl.

Best Wishes to everyone!

I'm glad to hear it went well! I hope I get a similar scenario.
Thanks for responding.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current


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