Triggers

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RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Triggers

Postby RulaLenska » Mon Sep 17, 2018 9:35 pm

Triggers of the painful variety. I noticed my first trigger last summer. I was still on the 5FU pump. I would get a bollus prior to the 46 hour hook up. Twice my pump malfunctioned and I also received a bollus prior to disconnect. This triggered an extremely painful bout of hand and foot syndrome that was very heat sensitive. It lasted a couple of months and made my neuropathy seem minor in comparison. During the heat of summer. I couldn’t drive because I couldn’t handle the steering wheel and I couldn’t wear shoes. I actually considered stopping treatment. Dropped the 5FU and it eased. I had a colectomy in November, a PVE in May, a liver resection in June, and a cryoablation on a foot neuroma a month ago. An Issue I was unaware of is that anesthesia can exacerbate neuropathy. It was after the last procedure that my neuropathy went mad. I wish I had the numbness and tingling but alas I have the awful pain. Freezing burning throbbing. And it climbed to my knees and returned to my fingers with a vengeance. I’m seeing another specialist this Wednesday. The good news is I’m NED and chemo free for the foreseeable future! This is unbelievable to me. As soon as I find some relief for my fingers I will contribute more here. I took extra meds so I could peck this out.
I don’t know if it’s any one particular anesthetic that triggers this increase. Not enough research goes in to CIPN. Anyone have a similar experience?
Peace and health
Cyn
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Triggers

Postby AppleTree » Mon Sep 17, 2018 11:17 pm

Congrats on NED. I am sorry about your extreme neuropathy. My DR constantly asked me about mine. I am a knitter. I knit all through chemo. When I could no longer hold small sock needles, I started knitting chunky scarfs with large needles (11-13). I really think that the finger gymnastics of knitting helped keep the neuropathy at bay. I also walk every day. My feet are a bit worse. Sometimes I try marching and stomping my feet for short periods of my walk. Who knows if it will work, but at least I am trying.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Triggers

Postby MissMolly » Tue Sep 18, 2018 1:32 pm

Speaking generally, a rise in body inflammation will tend to an increase in how neuropathic pain is experienced.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Re: Triggers

Postby RulaLenska » Tue Sep 18, 2018 7:46 pm

AppleTree wrote:Congrats on NED. I am sorry about your extreme neuropathy. My DR constantly asked me about mine. I am a knitter. I knit all through chemo. When I could no longer hold small sock needles, I started knitting chunky scarfs with large needles (11-13). I really think that the finger gymnastics of knitting helped keep the neuropathy at bay. I also walk every day. My feet are a bit worse. Sometimes I try marching and stomping my feet for short periods of my walk. Who knows if it will work, but at least I am trying.

I’m normally quite active but I’ve been hobbled by the neuroma and now the increase in neuropathy. My oncologist thinks this major increase in pain was from having anesthesia twice in a relatively short period of time. I actually needed a wheelchair for a few days. My thumbs are worse than my fingers so I have to be mindful of picking things up. Hopefully my pain management doc will have some new ideas. I’ve done all the usual meds, acupuncture, physical therapy, and exercise. I don’t expect a miracle I just want enough relief to be independent again and maybe sleep through the night once in a while!
Happy knitting!
Cyn
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Re: Triggers

Postby RulaLenska » Tue Sep 18, 2018 7:53 pm

MissMolly wrote:Speaking generally, a rise in body inflammation will tend to an increase in how neuropathic pain is experienced.
Karen

I am aware of the increase from inflammation but hadn’t heard of an increase triggered by anesthesia. Pronounced and prolonged. I’m really hoping for a decrease.
Fingers crossed
Cyn
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.


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