Problems with oxi

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Wishingonastar
Posts: 21
Joined: Wed Dec 16, 2015 11:58 am

Problems with oxi

Postby Wishingonastar » Thu Jan 07, 2016 6:18 am

Hi,

Wondering if anyone's experienced the same with oxi? I've had 3 doses & with all 3 had cold sensitivity & tingling in my hands/ feet/ face plus throat discomfort & cold intolerance.
Had my 3rd dose ten days ago and I still can't leave the house apart from to dive into a warm car (in Scotland & it's not warm outside!).
If I'm outside for more than two minutes my face spasms uncontrollably & my feet feel numb up to my ankles. Happy to tolerate this if its temporary as willing to do anything to reduce recurrence risk but have a feeling the onc will be stopping/ reducing my dose...

Anyone had similar reaction & managed to get through all 8 doses? Or had similar for it to resolve? I want to do everything I can to live a long life but I'm only 28 & need my hands/ feet to work to some degree so I can look after my kids. Anyone with a crystal ball to tell me if I need this chemo or not would come in very handy right now! X
Diagnosed 8th oct 2015 with upper rectal cancer aged 28. 4.5 months postpartum
LAR & TME 12th oct, no stoma.
pT3 4/25 nodes stage 3
Started cap/oxy 13th November 2015
CT scan: Nov 2016 NED

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Problems with oxi

Postby midlifemom » Thu Jan 07, 2016 6:55 am

Sorry, no Crystal ball.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

LB10
Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

Re: Problems with oxi

Postby LB10 » Thu Jan 07, 2016 8:53 am

Hi wishingonastar,
Of course everyone is different, but these are known side effects of oxi. I was fortunate enough to have my chemo in the spring, but even then I felt it. After my first treatment I went for a walk with a friend in the evening. It was around mid 50'sF. I wore a winter coat and didn't think it was cold at all, but after a very short while my hands and feet became numb and my lungs felt like they were solidifying, making it difficult to breath. I was quite naive at this point and didn't realize what was happening. I was frightened but once inside and warm it all slowly resolved. The medical team assured me that no permanent damage occurred. I avoided a recurrence of those symptoms by strictly avoiding the cold. Being wrapped up when necessary. Once I was off the oxi, those side effects were completely gone within a couple of weeks. The best thing you can do is just avoid the cold as best you can for now. I was advised to wear a scarf around my face when going out. I wish you all the best in your treatment. You will get through this.
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

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spinnz
Posts: 74
Joined: Sat Dec 05, 2015 4:19 pm
Facebook Username: Diana Wiseley

Re: Problems with oxi

Postby spinnz » Thu Jan 07, 2016 9:57 am

I was only able to take 2 doses of Oxi... it affected my Neutrophils and Neulasta, (or maybe the Oxi), caused my liver enzymes to rise... I had all of the side effects, but I wish I could take a few more doses because I know it gives me the best chance of a cure. I wore gloves and put hand warmers in them, which really helped. I even wore fingerless mitts to bed...
Dx age 53 10/8/15
Lap/robotic converted to open sigmoid colectomy, partial small-bowel resection and right salpingo-oophorectomy 10-9-15
CRC stage 3b, T3N1aM0
Margins clear of malignancy
1/27 lymph nodes
Well differentiated
CAT / MRI's indicate NED
FOLFOX + Neulasta- 2 rounds 11/15
Xeloda, 1 week on 1 week off 1/16- 5/16
1/5/16 CEA 1.0, 5/16, 1.0
Factor 13-bleeding disorder
NEW DX
11/15/18 IDC

kandj
Posts: 308
Joined: Sun Sep 27, 2015 11:29 am

Re: Problems with oxi

Postby kandj » Thu Jan 07, 2016 10:25 am

Hubby did 7 rounds of Folfox and definitely had the neuropathy in his feet and hands. Had the cold sensitivity in his teeth and throat, but that was usually only an issue for a few days following chemo. He has been off Oxi since Nov (last Folfox was Nov. 11) and almost all of the neuropathy is gone. For the hands and feet he found really thick wool socks were best. And I bought him some of these gloves, which he says work great: http://www.amazon.com/Heat-Holders-Ther ... B00HRL7IK0
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

Wishingonastar
Posts: 21
Joined: Wed Dec 16, 2015 11:58 am

Re: Problems with oxi

Postby Wishingonastar » Thu Jan 07, 2016 10:28 am

Thanks, I'll definitely be persevering as long as they let me. Reassuring to hear others have had similar. Think it's just how long it's been going on this time worrying me, my eyelids shut involuntarily every time I leave the house 10 days later. Luckily my bloods so far have held up. plus my hands are agony from it ruining my veins. So far no nurse has got my cannula in without 3 go's either...Lucky I'm ok with needles!
There's a large trial ongoing looking at 4 cycles xeloda vs 8 and disease free survival due to publish preliminary results in March. Will be asking my oncologist about it in case some results may be available to her. Would be lovely if it could be safely cut down for people in the future. Thank you for your replies x
Diagnosed 8th oct 2015 with upper rectal cancer aged 28. 4.5 months postpartum
LAR & TME 12th oct, no stoma.
pT3 4/25 nodes stage 3
Started cap/oxy 13th November 2015
CT scan: Nov 2016 NED

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Problems with oxi

Postby BrownBagger » Thu Jan 07, 2016 10:34 am

Lots of liquids and as much exercise as you can stand. The endorphins released with exercise help with nausea, among other things.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Problems with oxi

Postby Annemiek » Thu Jan 07, 2016 10:39 am

I was adviced these were known side effects and only to stop oxi if they continued until the next chemo round. i wore a scarf Over my face in march when it was still cold outside, wore gloves in the house. Drank warm lemonade and slept with socks on and gloves, used gloves on the ipad as ell.

i Have hothands sole warmers that keep my feet warm in my uggs.

I had 10 rounds of oxi and then suddenly the symptoms did not disappear and it was dropped. They got worse and now slowly wearing off, after three months, still using feetwarmers though.
There's a trial going for 6 rounds instead of 12 rounds oxi, so I would aim for 8, in the meantime, make your life more comfy by wearing a balaklava ( though not when visiting a bank) and chargeable footwarmers ( they've got them with bluetooth and ipone app)

I know it's painful, but if you can hold on, I would do so, i think the extra percent cure is worth it!
Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Wishingonastar
Posts: 21
Joined: Wed Dec 16, 2015 11:58 am

Re: Problems with oxi

Postby Wishingonastar » Thu Jan 07, 2016 11:05 am

Thanks for the pep talks, I need it. This cycles floored me & I hate not being able to be the mum I used to be. Know this is what I have to do to give myself the best odds but missing the 'old me' so badly. Patience has never been a strong point of mine...

Half of me hopes they stop the oxi & half of me is terrified they do. If the tingling/ pain hasn't resolved by my next infusion (10 days so here's hoping it goes!) they will withhold it. Ultimately I'll 'do as I'm told' by the oncologist-again not a strong point of mine... Thank you for advice everyone X
Diagnosed 8th oct 2015 with upper rectal cancer aged 28. 4.5 months postpartum
LAR & TME 12th oct, no stoma.
pT3 4/25 nodes stage 3
Started cap/oxy 13th November 2015
CT scan: Nov 2016 NED

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Problems with oxi

Postby Annemiek » Thu Jan 07, 2016 11:13 am

I was so longing for things I could not have, icecream etc .... So I tried out stupid things like warming orange juice in the microwave (yuck) and had cravings for boiled eggs every morning. Couldn't have them softboiled so I would try to optimise the timing so it would have juuuuuuuust set..
I did find out that you can eat chocolate icecream with loads of wipped cream in week two of folfox...the cream helps your mouth with the cold. Hell, anything is better with cream!!! And since I lost a kilo every other week, enjoy all the fatty stuff while you can!

Good luck, you are doing great!
Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Wishingonastar
Posts: 21
Joined: Wed Dec 16, 2015 11:58 am

Re: Problems with oxi

Postby Wishingonastar » Thu Jan 07, 2016 11:26 am

Love your way of thinking! I'm pretty wee as it is (49kg at my heaviest ever) and hit 44kg after surgery. Now up to 46kg so shovelling in all I can when not feeling like crap from the oxi. I tried to go all anti cancer diet straight away but lost more weight so I'm eating anything & everything when I can stomach it. Doctors orders... X
Diagnosed 8th oct 2015 with upper rectal cancer aged 28. 4.5 months postpartum
LAR & TME 12th oct, no stoma.
pT3 4/25 nodes stage 3
Started cap/oxy 13th November 2015
CT scan: Nov 2016 NED

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: Problems with oxi

Postby stu » Thu Jan 07, 2016 11:47 am

Hi.
My mum had her dose reduced by 25% the second year of her treatment. The side effects were dramatically reduced. As she had visible disease we were able to see that it was still as effective. Another point we noted that the dose was higher than the NICE guidelines and the pharmaceutical guidelines so there was room for manoeuvre. That was in 2010 but given we are in the same country its worth looking into for peace of mind.
My mum has a little trick for veins that are struggling. She carries a little bag containing a COVERED hot water bottle and rests her hand on it as she travels to her appointment and whilst she is waiting. After two years of oxi this helps a lot.
Its a wet winter here.
Kind regards
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Deborah614
Posts: 23
Joined: Tue Jan 27, 2015 10:24 am
Facebook Username: Deborah Melchi

Re: Problems with oxi

Postby Deborah614 » Thu Jan 07, 2016 1:08 pm

I can't imagine being your age, with small children, going through treatment. I am just over 4 weeks out from 8 rounds of Folfox. I wanted to quit at 6 because of the side effects, but my onc wanted me to have 12.(YIKES!!) He stopped me at 8 (WHEW!!) because of the the neuropathy, although I needed 20 shots of neupogen for low WBC to get as far as I did. I had the cold sensitivity and also experienced esophageal spasms during infusion with the 5fu pump. They were excruciating and really, really, really made me want to quit. I'm very proud of myself for doing #8 and my onc seemed both surprised and pleased I made it that far, too. I read a post on here about using Acetyl-L-Cartinine to heal neuropathy. I am using it, and believe it's really working to ease the symptoms. If I knew how to link you the post on my new computer, I would, but if you search the topic "Finally--something that really seems to help with neuropathy!" by Ipas on 12/08/15 you'll find it. Read the comments, too, because there is additional info and links to the studies. Ajane posted in comments on 1/02/16 a "neuropathy cocktail" that I have been taking. I'm already walking less like a drunkard and not dropping dishes anymore. My heart goes out to you and to your little kiddos. My cancer year was a brutal beast on my body, but I'm already starting to rally around, and I'm a grandma of 10, already helping babysit my 8month old and 3yr old grandsons:) You'll get this behind you and wonder where you found the strength and character to overcome cancer, but believe in the fact that you have it in you. We are super heroes, after all.
dx 12/17/14
stage 2 rectal cancer T3N0M0
standard treatment 28 days radiation w/xeloda, surgery, 8 rounds Folfox
22 shots neupogen 32 days in hospital for infections
60 years old
mother of 6, grandmother of 10, wife of 1 for 35 years
Jeremiah 29:11
05/28/15 APR, Barbie butt, permanent colostomy
May 2016 Cat scans NED!
May 2016 mammogram
June 2016 invasive ductal carcinoma breast cancer left breast stage1
August3 '16 mastectomy with reconstruction, genetic screening scheduled

Wishingonastar
Posts: 21
Joined: Wed Dec 16, 2015 11:58 am

Re: Problems with oxi

Postby Wishingonastar » Thu Jan 07, 2016 2:02 pm

Congrats on completing your chemo! The children make it harder & also easier. If it was just me I think I would risk dropping the oxi but I look at them & they need me so much & I need them. I just hate not being the mummy I want to be right now. My mum and husband are doing so much to help but it hurts emotionally to let them do 'my job' if you know what I mean.
I had a vivid dream of my son (7 months) as a 6/7 year old which felt so real I could hear his voice & see his grin... When I feel hopeless I hold onto that dream & hope it's a premonition of things to come- a healthy mum raising her children, it's all I want. I just have to work a bit harder to get it than your average person and rely on a bit of luck (and surgery, chemo!) xx
Diagnosed 8th oct 2015 with upper rectal cancer aged 28. 4.5 months postpartum
LAR & TME 12th oct, no stoma.
pT3 4/25 nodes stage 3
Started cap/oxy 13th November 2015
CT scan: Nov 2016 NED

jens22
Posts: 1012
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Problems with oxi

Postby jens22 » Sat Jan 09, 2016 10:16 pm

My oncologist asked the same questions every time about numbness tingling and cold intolence. He said if it lasted more than 2 weeks time to cut back a bit on the odse. Also If you can leave the house...it's too much for your body. Let your md know on next visit.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.


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