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Thread: Desperate to eat, bad taste

  1. #1
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    Desperate to eat, bad taste

    First, Happy Thanksgiving everyone!

    My problem is not a lack of appetite. My problem is the taste of everything. I've seen this phenomenon described as "tasteless" or "cardboard" or sometimes "metallic". With me, the best way I can described it is that whatever I'm eating has been covered with a sauce made from Lysol, sugar, and butter. It's the most horrible taste you can imagine. It doesn't matter what I eat: bread, sweets, something spicy, meat, vegetables, even Triscuit crackers.

    I know I have to eat to live, not live to eat, so the actual enjoyment of food is going to be secondary for a while. But the taste is so awful I can't keep down what I do eat.

    Does anyone have any suggestions for neutralizing this horrible taste? I've tried gargling with baking soda and warm water, I'm using Mugard (which is really a salve for mouth sores, so it's not much help), I'm scouring the Internet. I'm desperate. I've lost over 30 pounds in a little under a month, and I'm starting to consider getting the feeding tube. As hard as I was trying to avoid it, now it seems infinitely preferable to actually eating.

    Thanks, and God bless!

  2. #2
    This is a long shot, but one of the things that tasted true to me when my taste was at its lowest ebb last week was sips of hoppy bitter beer. The exact brand was 'Spitfire', but I think any good real ale would have tasted good.

    David

  3. #3
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    You know, just about the only thing I can consume that's tolerable is root beer. I'm on my way to get last minute dinner things right now, and I'm going to get some beer. Thanks for the suggestion, David!

  4. #4
    Administrator Top User Didee's Avatar
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    Hello. What chemo are you on?
    I lost taste buds for a few days each chemo.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  5. #5
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    I'm on Cisplatin, but that may change soon. There is an indication of a problem with my kidneys and, depending on how that shakes out, they may change my chemo.

    I wish I *would* lose my taste buds. If everything was tasteless, at least I could eat.

    Unfortunately, the beer trick didn't work. I've lost another four pounds in the last three days. One thing I have noticed is that there seems to be a white coating on my tongue. I gargle and rinse and brush very well, and it's still there. Scraping it with the edge of a spoon removes quite a lot of a thick, white substance, and scraping as much as I can seems to make a small improvement. I can't scrape the whole tongue though, because of the gag reflex.

    I just feel so helpless with this. The things I expected happen aren't as bad as I thought they were going to be, and the one thing that feels like torture is something I never saw coming.

  6. #6
    Some people say squeezing lemon into water makes water drinkable. For the metallic taste, I've heard eating with plastic utensils helps. I'm sorry you're going through this! Has a doctor or nurse looked at the stuff on your tongue? Some people have trouble with thrush during chemo.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  7. #7
    mom said when shes on chemo of anykind all her food tastes like either cardnoard/ nail poish remover(te way it smaells) she could only taste all the chemicals in processed foods. thye things she tolorated most were-(odd as it seems) la choy sweet n sour sauce-she put it on everything. honey worked a bit too and homemade chicken soup with little to no salt.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

 

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