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#41975 11-13-2007 03:56 AM
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My brother, Joe, started radiation on Monday, 11/12. He has 30 sessions scheduled for his Stage 3 tongue cancer.

I can see from the posts that loss/change of taste happens for a lot of people in radiation. When does this typically happen (i.e. week 3)?

Thanks for your help!

Jean


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
#41976 11-13-2007 04:52 AM
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As with everything else this varies. For me at the end of week 2 stuff started to taste funny (metallic) and by week 3 it was pretty much done. (Except vanilla and chocolate and coffee, the first two I never lost)

... just make sure he still eats even though it might not taste right.. or at all. Otherwise this turns into one hell of a weight loss program.

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#41977 11-13-2007 07:24 AM
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In my case, the metallic taste began about week 3, and by week 5, everything tasted awful. Chocolate was one of the first things to go in my case, and has yet to come back completely.

I concur with Markus that you cannot let the taste impact his eating. I ate a lot of mashed potatoes with gravy and very finely ground meat. Soups worked well, as did scrambled eggs. I lost 30 pounds, which I should have lost anyway. I started treatment at 238, ended at 208. Could still lose a few . . . ;-)

This is not a diet plan. Your brother needs every calorie he can take in to keep his body strong enough to get through the treatment in good shape and to fight the cancer.

Good luck to you both.


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
#41978 11-13-2007 08:33 AM
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Hi Jean

Mine was pretty much the same as Markus. By week 3 I was totally dependent on the PEG tube and my taste was gone. Never did have the metallic taste. Week 4 I was given a two week 'break' due to the extreme Mucouscitis I had. At the end of the break (which was Thanksgiving) I was able to taste salty stuff but once I started treatment again, all taste went away again quickly and I was back on the tube for another 8 weeks.

The nurses kept telling me calories, calories, calories and protein, protein, protein. I was bale to maintain my weight pretty well thru radiation, however after getting done , I dropped another 15 pounds with no change in caloric intake.

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
#41979 11-13-2007 12:26 PM
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...and Buzz states that he didn't lose his 'taste' at all during 38 IMRT & 6 chemo sessions; nor did he suffer from any mucous issues...so, you too may be one of the lucky ones! Good luck to you!

Lois & Buzz in NC


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#41980 11-13-2007 03:27 PM
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For me as well. Started losing taste around the second week, and by the third week, it was gone, and then everything tasted terrible. Oatmeal, peaches, and Ensure was my diet for weeks 3-5. By week 6, I was strictly on a Strawberry Ensure Plus and 4 scoops of icecream milkshake diet. I am now 12 days out of radiation and still on the Ensure, but hoping for some real food by Thanksgiving.

Good luck to both of you, and remain VERY strong for your brother. It will get difficult, and possibly very difficult to eat and swallow. But remember that it will get better a couple weeks after radiation is done.

Dan


39 yo non-smoker, social drinker, triathlete. DX 05/2007 SCC Rt Tonsil. Tonsillectomy & MND 08/01/07 w/ removal of SCM, submandibular, and IJV. 22 Nodes removed, one positive. IMRT TomoTherapy began 09/18/2007. 30x (60gy).
#41981 11-13-2007 03:28 PM
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For me as well. Started losing taste around the second week, and by the third week, it was gone, and then everything tasted terrible. Oatmeal, peaches, and Ensure was my diet for weeks 3-5. By week 6, I was strictly on a Strawberry Ensure Plus and 4 scoops of icecream milkshake diet. I am now 12 days out of radiation and still on the Ensure, but hoping for some real food by Thanksgiving.

Good luck to both of you, and remain VERY strong for your brother. It will get difficult, and possibly very difficult to eat and swallow. But remember that it will get better a couple weeks after radiation is done.

Dan


39 yo non-smoker, social drinker, triathlete. DX 05/2007 SCC Rt Tonsil. Tonsillectomy & MND 08/01/07 w/ removal of SCM, submandibular, and IJV. 22 Nodes removed, one positive. IMRT TomoTherapy began 09/18/2007. 30x (60gy).
#41982 11-13-2007 03:59 PM
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In my case I would say my "buds" began changing around week 3. The first notable loss was chocolate which I ate a lot of. I bit into a Hershey bar around week 3 and ran for the trash can as the taste was terrible. I simply could not believe it. Now, 16 months post Tx, I would say taste is somewhere between 90% to 95% back to normal and may be as good as will ever be. Chocolate still tastes terrible and I cannot tolerate the taste of beer or any other alcohol. Thank goodness I was never much of a drinker anyway. My taste for coffee was never really lost thank goodness as I would rather have coffee than any alcohol. Good luck and well wishes to your brother.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#41983 11-14-2007 03:29 AM
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ord_dfw Offline OP
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Well, it looks like week 2-3 is the turning point ... if it happens. Thanks for the replies.

Do foods still smell good? What about cravings?

Thanks,
Jean


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
#41984 11-14-2007 05:11 AM
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Smell was not affected at all if anything it becomes more acute.
I did not have cravings from the middle of and and after the Tx. Later on however you do... and often get disappointed because it jut does not taste right (yet) or is to dry or crumbly.
.... it is a work in progress.....
M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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