#39284 10-22-2005 06:11 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Lily, I am really sorry to hear about Scott's latest setback. Many time tongue cancer is cured with radiation and chemo alone without surgery, some even think that radiation and chemo are the "first line" Tx over surgery. We will be praying for you both.
They told me it was better to have a full stomach pre chemo - they even provided snacks during chemo- check with your oncologist.
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)
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#39285 10-23-2005 01:02 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Lily --
One reason they say not to eat right before chemo is because of the so-called "Sauce Bearnaise Syndrome" -- if you experience severe nausea after eating something your mind tends to associate that food item with the illness and you will have a hard time ever enjoying it (or perhaps, even eating it) again. The syndrome was named by a well-known pyschologist who suffered serious illness after a meal containing sauce Bearnaise, which had been one of his favorites. Even though he later discovered that his sickness was not due to the sauce (his whole office had caught some stomach flu) it was months before he could even think about the sauce again. He did some studies and found that rats and other animals also avoid any food associated with nausea following ingestion, it seems to be a mechanism by which we avoid being poisoned. Thus the instructions in our chemotherapy booklet "not to eat a favorite food within two hours of chemotherapy" -- in order to avoid being turned off it forever.
Hope the chemo and radiation is going well -- it is not a easy road by any means but one that must be taken...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#39286 10-23-2005 06:11 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Gail makes a good point. The more technical name for "sauce bernaise syndrome" is learned taste aversion, its a form of classical conditioning actually, but unlike other forms it usually only requires one pairing of taste and severe nausea to have a lifelong aversion to that taste. This is also true for smell, btw, so don't wear a perfume your husband likes while he's having chemo as he may never be able to tolerate it again!
I don't recall what I was told about eating prechemo but they seemed to think it was better if I nibbled or kept my stomach moderately full during the chemo--I think because a really empty stomach can actually contribute to the nausea. I hope his chemo goes smoothly.
Nelie
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"
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#39287 10-23-2005 02:28 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | While I realize fullwell that the above are very serious subjects, the "sauce Bernaise syndrome" brought up a very old memory. When a senior in college, I attended the Sugar Bowl in New Orleans and on New Years's Eve spent way too much time in Pat O'Brians drinking Hurricanes[and I have never been so sick in my whole life afterward.] To this day, I cannot look at a pink any kind of drink, nor can I abide a red cherry anywhere near me ![eek eek](/forums/images/graemlins/default/eek.gif)
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#39288 10-23-2005 02:52 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Well being a former alcy I can tell you that puking NEVER stopped me from drinking but I still won't eat scrambled eggs after losing some in the early post Tx. I would rather kill myself rather than drink Boost ot Ensure (blah!) - although some here actually like it.
I got violently ill from eating portobello mushrooms one time and I'm eating them again (I have to admit that I did ease into it).
Sounds like an inverted Pavlov's dog thing to me (heh heh).
Seriously what my chemo preparation pamphlet said was to eat a light meal, no greasy, spicey or hard to digest foods and nausea could be minimized. It usually isn't a problem until some hours later anyway.
Don't drink alcohol during chemo.
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)
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#39289 10-23-2005 05:01 PM | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | Conditioning of this sort is definately a reality. There were some unique smells that I encountered in Vietnam...when they cross my path, even years later, they bring up some unpleasant sensations. Ditto drinking tequila. Can't bare the thought of it.... this relates to a story that we won't go into about waking up on the floor of a Tiajuana bathroom..........
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#39290 10-23-2005 07:00 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | When I teach about this I always use the alcohol example. Too many of my (mostly underage) students seem to be familiar with that one ....
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"
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#39291 10-24-2005 01:16 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | The Sauce Bernaise syndrome doesn't always kick in, however -- I am from Maine and lobstah is my favorite food. Once when I was in college, we had a big lobster feed and that night I was violently sick -- really bad, I still remember it! It could actually have *been* the lobster, who knows -- however, I was back to eating the red beasties the very next week and have never even looked at them cross-eyed. They are still my favorite!
However the syndrome did affect Barry's ability to tolerate the Manuka honey - recall we were trying this as an anti-mucositis trick . He was supposed to take it 15 minutes before and after radiation but he was getting Ethyol, and the juxaposition of the honey and the amiphostine semi-nausea finally caused him to bag the honey trick about 5 weeks into treatment. Even now the smell of the (very strong and medicinal) honey makes him feel a bit queasy -- for that reason I would recommend anyone trying honey simply use a "natural" wild honey and not Manuka. (The original paper just used a wild honey, but some studies since then have used Manuka, which is from the tea tree plant of New Zealand.) Having said that, Barry did not develop much mucositis until about his 5th week of treatment, and then less than most people at Hopkins, so who knows...?
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#39292 10-24-2005 04:57 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Gail, that's interesting about the lobster. I wonder if it's because it has such a subtle, not a strong flavor (or strong distinctive odor) that it didn't affect you like that.
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"
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#39293 10-24-2005 09:42 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | When I was 10 i was sick after eating orange flavored icing, even now nearly fifty years later i don't do orange flavored stuff Sunshine.. love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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