Need help metallic taste

Please feel free to read, share your thoughts, your stories and connect with others!
Carboxo
Posts: 2
Joined: Sat Nov 02, 2019 5:10 pm

Need help metallic taste

Postby Carboxo » Mon Nov 04, 2019 5:26 pm

Hi Everyone
I am asking a question for my dear sister. She is newly diagnosed rectal cancer and just started oxiplatin with xeloda this past Tuesday. She has terrible
Metallic taste with everything. She wanted me to ask for advise on what to do. She isn’t quite ready to join or read the blog but is ok with me doing the asking. My signature is her info. Please help.
Thanks
DS: caregiver
42, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

martd
Posts: 112
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Need help metallic taste

Postby martd » Mon Nov 04, 2019 8:55 pm

One thing I found worked good for me was the peppermint candies. The red and white pinwheel ones. It helped with drinking water also, I would have one in my mouth while drinking. As far as eating, different things work for different people. Sauce type foods worked good for me, anything wet. Mash potatoes and gravy was a winner.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

User avatar
Phuong
Posts: 1480
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: Need help metallic taste

Postby Phuong » Mon Nov 04, 2019 8:58 pm

Plastic utensils have helped some people.
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

radnyc
Posts: 404
Joined: Tue Apr 06, 2010 6:32 pm

Re: Need help metallic taste

Postby radnyc » Mon Nov 04, 2019 9:22 pm

It’s a horrible side effect of the oxaliplatin. What help was actually eating well seasoned foods. Once you’re done with the chemo things go back to normal. Hang in there.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Need help metallic taste

Postby Rock_Robster » Mon Nov 04, 2019 9:35 pm

radnyc wrote:What help was actually eating well seasoned foods.

I agree with radnyc - I found spicy food much more tolerable than plain things. Particularly spicy chicken, hot wings, fried rice, curries - anything with enough flavour to mask the background taste. I also put Tabasco / hot sauce on everything. Plain water tasted horrible for me, so I used things like ginger ale/beer, sparkling water with lemon, etc. It sucks but as others have said it does go away fairly quickly, thankfully.

Best of luck to you guys.
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Need help metallic taste

Postby wife2jeff » Tue Nov 05, 2019 11:07 am

My husband is only on 5fu right now not oxaliplatin and he gets the metalic taste immediately with the bolus and then it continues while he has his pump. Usually the taste subsides a couple of days after pump is off. He sucks on a lot of jolly ranchers or mint candies, that seems to help a lot. That is also good to prevent mouth sores so they say. Good luck hope she finds something that works for her.

Gravelyguy
Posts: 245
Joined: Thu Jul 05, 2018 6:03 pm

Re: Need help metallic taste

Postby Gravelyguy » Tue Nov 05, 2019 2:25 pm

Nothing tasted normal during treatment for me. My solution was to eat spicy foods. I ate a lot of Taco Bravo's from Taco Johns, a regional chain, and spicy chicken sandwiches while doing chemo. I did avoid foods that I really enjoy. That way I didn't associate those foods with chemo when I got done.

I have not had a taco bravo since finishing chemo. :D

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Mohrfamily
Posts: 182
Joined: Tue May 22, 2018 4:04 pm

Re: Need help metallic taste

Postby Mohrfamily » Wed Nov 06, 2019 5:48 am

My DH didn't really have the metallic issue (at first), we are a year and a half into FOLFOX and had to drop oxaliplatin after 5ish months due to neuropathy, by the way ask the doctors if it would be beneficial to take a B vitamin supplement now to delay any neuropathy, hubby was told to take a super b vitamin complex just OTC vitamin.

Now with the time we've been chugging along the metal taste has hit and he says its better to use plastic forks
DH dx officially stage IV with liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

User avatar
horizon
Posts: 1517
Joined: Tue Apr 12, 2011 10:10 pm

Re: Need help metallic taste

Postby horizon » Wed Nov 06, 2019 9:04 am

I was really weird in that I had the metallic taste in my mouth but it didn't make food taste bad.

If I go through chemo again I'm going to try mberry tablets. They're not expensive on Amazon.

https://www.youtube.com/watch?v=0yMHkYl6EHM
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Carboxo
Posts: 2
Joined: Sat Nov 02, 2019 5:10 pm

Re: Need help metallic taste

Postby Carboxo » Wed Nov 06, 2019 12:59 pm

Hi Everyone
Thank you so much. I shared all this with my sister. Water taste horrible. Food taste horrible. This is her first round. She ended up in ER immediately after for heaviness in her arm, numbing and tingling. She has cold sensitivity, neuropathy,Jaw spasms and throat spasms. Had to go get hydration yesterday. Oh yeah severe vomiting has started. Has problems swallowing XELODA tablets.
I got her gloves to wear. Cherry candy, seltzer’s, spicy food seems to help. But metallic taste is still the worst. Will keep posted.
DS: caregiver
42, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

Claudine
Posts: 165
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Need help metallic taste

Postby Claudine » Wed Nov 06, 2019 1:35 pm

Carboxo, how is the Oxaliplatin delivered to your sister? Does she have a port? My husband didn't for his first infusion and pain in his arm was really bad, so he got one implanted, which made a huge difference. Didn't help with neuropathy unfortunately (he's still suffering from that one year after finishing treatment), and feeling like he was drinking crushed glass even if things were at room temperature (he drank a lot of lukewarm tea then!).
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

boxhill
Posts: 387
Joined: Fri Apr 06, 2018 11:40 am

Re: Need help metallic taste

Postby boxhill » Sat Nov 09, 2019 12:23 pm

I hope your sister isn't trying to drink anything cold during or in the days after oxy infusion? That is usually what brings on the feeling of glass shards in the throat. She should stick to warm fluids only, and perhaps ease into room temperature. The mention of seltzer makes me wonder. :) She should also wear warm gloves and socks even if it is relatively warm where she lives.

I never had a strong metallic taste that I noticed, but I also ate a lot of spicy food. Things like ginger candy can help, and ginger settles the stomach. The idea of holding a peppermint candy in your mouth while drinking is brilliant!

I also never had outright nausea, but they gave me Emend and steroids in the pre-meds, and the times my stomach felt kind of queasy I found an onandsetron helped. That and eating a couple of saltines to avoid having an empty stomach.

I think it is very important to keep ahead of nausea. At my place, they made sure we were stocked with three different medications from the start, and said if the first one doesn't work, take the second after x time period, and so forth.

BTW, there's a lot of information here on the effects of radiation on women with rectal cancer. You might not want to share it with her when she's already struggling with this phase, but it is probably good to be forewarned for later, because there are some steps she can take if she knows before going into it. Doctors tend not to tell women about this, we have discovered. :(
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

martd
Posts: 112
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Need help metallic taste

Postby martd » Sun Nov 10, 2019 10:43 am

The jaw spasms you mentioned could be what's know as "first bite" most people experienced this. When taking the first bite of food the jaw would feel like it locks up but then it would go away. If that's what she's feeling it's a typical side effect and will go away after the oxi is stopped. Eating is very difficult, the advice I got from my oncologist was whatever works..do it, even if it's fast food. Don't worry about trying to healthy there's time for that later. Try to drink a boost with every meal also, that's a good source of calories.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Siti
Posts: 70
Joined: Thu Aug 01, 2019 10:58 am

Re: Need help metallic taste

Postby Siti » Mon Nov 11, 2019 9:02 pm

My husband has issues with the “first bite“ too and sensitivity to cold. The first few days after infusion he drinks only hot beverages, avoids any hard to chew foods like nuts and later on ease in the colder liquids like smoothies or juices with a straw. Food wise, it’s funny but spicy food works for him too and infused water (ginger/ mint/ berries) seem to be more palatable.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

boxhill
Posts: 387
Joined: Fri Apr 06, 2018 11:40 am

Re: Need help metallic taste

Postby boxhill » Tue Nov 12, 2019 3:25 pm

I never had first bite. I don't have any sense of how common it is.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Majestic-12 [Bot] and 45 guests