| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Margaret,
The lack of taste is something horrible that unfortunately so far comes with our Tx. Maybe one day...Until then hang in there and know that it will get better and besides before long worst things will take your mind off the no taste anyway. LOL
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Margaret,
It will get more difficult as you proceed through treatment to stay on top of hydration. I kept a log. I had to be rehydrated in the hospital twice - once in the ER and the second time in the infusion unit -MUCH better in the infusion unit. In and out in a 1/2 hour. ER was a 4 hour hour nightmare.
Cisplatin AKA Platinol is made from platinum so I am not surprised about the metallic taste.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Ditto what Gary said re the ER. I had to get hydrated twice in the ER and they are just not mentally equipped to deal with our Tx. First you have wait the customary 2 hours to get a bed. Next you have to (or your caregiver when you're to weak to talk or give a damn) explain WHY you need hydration which is way more difficult than it sounds. Then they drip the solution in at like 1 drip per hour and then they said I couldn't leave until I pee'ed. If I would have had a knife that doctor would have had a real ER on his hands!!
So the moral of this nightmare is to STAY HYDRATED. Do not fall behind. Drink at least 48 ozs of water each and every day or you to will waste many hours dealing with ill aware good intentioned people.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Margaret, I also had that bad metallic taste from the cisplatinum and I found that things that were kind of salty cut through it the best. My husband made some very salty mac and cheese that I could have--though I couldn't really taste the cheese--and then I got by also on this portobello mushroom soup--the organic kind that comes in a box-- with dollops of yogurt. In fact, for some reason I could tolerate that soup far into my treatment when everything else either hurt or made me sick. Now I absolutely cannot go near it! And that is one warning you might want to take to heart is that if you have any nausea at all you will probably create taste aversions for yourself so it might be best to NOT try to eat the stuff you really love since if it tastes bad and you are nauseated after you will probably not want to go near it after treatment is over. Same goes for using a cologne you like to cut through the metallic/chemical smell (which I also did). For the rest of your life, that smell will remind you of chemo nausea. So if you go that route choose carefully.
Nelie
Nelie
Last edited by Nelie; 07-06-2008 08:04 AM.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Thanks, Nelie! I had a big bowl of hot and sour soup last night that was perfect - a little salty and easy on my tummy. I've also been having good luck with soups from Trader Joe's, pretty nutritious and yummy and I went out with friends to a Mexican restaurant the other night and had cheese enchiladas with guacamole, not delicious, but workable.
During my treatment for lymphoma, I was warned about avoiding favorite foods to prevent future aversions, but didn't have any trouble with that, thankfully. I'm hoping this time will be the same.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | During my treatments I could not wear my dentures so I ate flavored oatmeal, yogart, pudding, pasta and soups. I wasn't much for blended foods. But for a month I was only able to use the peg tube. This was due to mouth sores. Everyone is different so you have to try and see what works for you. But you can get great advice and alot of support. Just take it day by day. It will be all over before you know it. Rest and take care !
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | When I needed rehydrtaed, my Dr told me to go to the Dr that gave me chemo. No problem at all. I went and was out in an hour and feeling much better. I watch it close now.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm laughing at Nelie's post. BUt you are right Nelie and I bet not many of us think about it like you did.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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