Hello all,
Hope you are keeping well.
Just wondering something. About a year and a few months prior to diagnosis my mum started having what was diagnosed as Burning Mouth Syndrome - painful sores in her mouth which took a lot of hard work to subside. She underwent some taste changes, too - everything tasted sour, so much so that she had to add lots (LOTS) of sugar to most things she would eat so they could taste normal.
A couple of months after this, she suffered a minor stroke. A year after the stroke, she was diagnosed with stage IV CRC. The food started tasting normal again after her sigmoid resection. Aside from one episode of canker/sore reaction to the 5FU, my mum's mouth has been fine throughout chemo, too.
From what I've been reading, there doesn't seem to be a direct correlation between these symptoms, but I was wondering whether anyone here had similar experiences at all?
Pre-dx Burning Mouth Syndrome / Taste Change
Pre-dx Burning Mouth Syndrome / Taste Change
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
Re: Pre-dx Burning Mouth Syndrome / Taste Change
bumping up here for you !
never had these issues prior to CRC or chemo
had some on chemo ?????
don't know it that helps BUTT some folks should give their perspective too
Cheers
CRguy
never had these issues prior to CRC or chemo
had some on chemo ?????
don't know it that helps BUTT some folks should give their perspective too
Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Re: Pre-dx Burning Mouth Syndrome / Taste Change
I concur with CRguy, I did not have any of the burning mouth syndrome.
In fact I had no symptoms, any test that should have been a red flag for colon cancer came back negative or normal. I had bleeding hemorrhoids, my PCP figured those bleeding hemorrhoids were going to be my excuse for getting my baseline scope early in life. The rest is history.
Lee
In fact I had no symptoms, any test that should have been a red flag for colon cancer came back negative or normal. I had bleeding hemorrhoids, my PCP figured those bleeding hemorrhoids were going to be my excuse for getting my baseline scope early in life. The rest is history.
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!
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!
Re: Pre-dx Burning Mouth Syndrome / Taste Change
I didn't experience anything like this, for what that's worth. They did put me on antibiotics before the CC diagnosis, and the taste changes I had with that were horrible. That stopped as soon as I quit taking the antibiotics, though, so I'm sure those two things were related.
I've only had 3 mouth sores on chemo; just got my third today, and the other two were on maybe rounds 5 and 6 (one sore each). The sores only last a day or two and salt water or yogurt/kefir mouth rinsing helps a lot.
I've only had 3 mouth sores on chemo; just got my third today, and the other two were on maybe rounds 5 and 6 (one sore each). The sores only last a day or two and salt water or yogurt/kefir mouth rinsing helps a lot.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear
Re: Pre-dx Burning Mouth Syndrome / Taste Change
I didn't experience anything like this - in fact I felt absolutely great when I was diagnosed.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT
Re: Pre-dx Burning Mouth Syndrome / Taste Change
It seems like outs might be an isolated occurrence or possibly a coincidence!
Have not tried yoghurt/kefir for mouth sores - will give it a try if/when they come back.
Thank you for your help. Stay strong!
Have not tried yoghurt/kefir for mouth sores - will give it a try if/when they come back.
Thank you for your help. Stay strong!
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
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