Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#39274 10-09-2005 09:50 PM
Joined: Sep 2005
Posts: 36
Leze Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2005
Posts: 36
This has been prescribed for myhusband for when he starts chemo. Apparently it helps tremendously with the side effects.

Has anyone used it?

Does it work?

Thanks
LILY


wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
#39275 10-10-2005 12:44 AM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Yes, it works. For me it was the ONLY med. that worked and unfortunately they didn't prescribe it for me until after I spent a few days vomiting after chemo number one but it really helped me at the end of that and through chemo number two and it helped control the daily nausea I had from the ethyol. I hope you have good prescription drug coverage because it's outrageously expensive otherwise (but, I would say, still worth it if it can help him get through chemo without the days of constant nausea and vomiting).


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"
#39276 10-10-2005 05:59 AM
Joined: Sep 2005
Posts: 36
Leze Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2005
Posts: 36
Thank you Nelie

We are authorized for 20 pills a month because they are very expensive.

He already has nausea from the patch but its either that or suffer with the terrible headaches.

Thanks for the reply


wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
#39277 10-10-2005 07:19 AM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Zofran is very effective and works perfectly about 60% of the time according to the manfacturer. It is mostly effective during the first five days of use then you must switch to other anti-emetics like Compazine. There is another similar drug to Zofran but the name slips my mind right now. Zofran also comes in a liquid form that can be used in a PEG tube. They usually infuse Zofran prior to starting the chemotherapy as well. The pills (or liquid) are for afterward.
They also gave me Compazine suppositories which, as time went on, I was very grateful to have in my inventory - at least you can't throw them up. Ativan is another drug to have available. It can be swallowed, placed under the tongue or inserted into the Compazine suppository.

Patch, you mean Duragesic? There is an adjustment period - it will either get better or he will need to find something else.


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)
#39278 10-10-2005 07:56 AM
Joined: Jun 2005
Posts: 349
Likes: 2
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
Just a note that I continue to use the Zofran occassionally (8 weeks after starting treatment), and it works wonders.

It worked for me much better than the other anti-emetics (and continues to do so).

Compazine for me was too dissorienting.

Just a note to let you know we are all different.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#39279 10-10-2005 12:39 PM
Joined: Aug 2005
Posts: 158
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Aug 2005
Posts: 158
Zofran has been an absolutely unbelievable blessing for me. I managed to obtain sufficient samples of the ODT, Orally Disolving Tablets, such that I could take them immediately upon the onset of the nausea. I then used the regular tablets throughout the rest of the day.

In my case I have to say that it is just as effective now, after six weeks of treatment, as it was that first day. Expensive yes, but if it works that just does not matter, given a decent pharmacy plan that is.


No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac

Thank you for leaving your mark.
#39280 10-10-2005 07:46 PM
Joined: Sep 2005
Posts: 36
Leze Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2005
Posts: 36
Thank you for the feedback. I am hoping that this works for him as Compazine did nothing to help him.

Its great to hear that it works and it can do wonders. We need all that right now and we haven't even started the rad and chemo.

LILY


wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
#39281 10-12-2005 01:06 AM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Leze, my drug coverage also originally limited me (to 15 pills a month) but my medical oncologists's office, who has experience with this, called them and explained that I would only need the pills for one month--but I would need 30 of them--and the company made an exception and covered me for 30. You might talk to your medical oncologist about whether they'd be willing to try doing this for you.

Compazine suppositories made me feel horribly groggy but they were effective--way more effective than compazine pills (so you might ask for some even if the pills did nothing) and thye are a good backup for when you can't get anything at all down that will stay down.

I also didn't find that Zofran decreased much in effectiveness over time, though I think in general every 5 days I took a small break from taking it.


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"
#39282 10-12-2005 08:32 AM
Joined: Jul 2005
Posts: 624
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2005
Posts: 624
The other drug Gary mentions may be Anzemet --which is even *more* expensive than Zofran, but having said that, it works for 24 hours. That is what is generally given to patients (as an IV or shot) right before chemo. Barry found that, when he had to go back to using Ethyol to have his last 3 treatments on an older machine (the tomo being down), that the Anzemet worked while the Zofran no longer seemed to (as Gary notes).

He never could get on with the Compazine and in fact, it really didn't work very well for him.

These serotonin drugs are expensive but it's a whole different ball game now regarding chemo nausea -- Barry's 7 chemo treatments were non-events, he found the Ethyol much more of an emetic; it required very careful nausea management pre-and post-injection.

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!
#39283 10-22-2005 06:33 PM
Joined: Sep 2005
Posts: 36
Leze Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2005
Posts: 36
Thanks for the imput everyone.

Our first round of chemo starts this Tuesday and it will consist of Carboplatin and Paclitaxel once a week.

I think we are ready, we have the Zofran, the compazine on both pills and suppositories.

I read here somewhere that he should not eat anything right before and to sip water slowly throughout the day to aide with the nausea.

Wish us luck!!


wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
#39284 10-22-2005 07:11 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
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)
#39285 10-23-2005 02:02 AM
Joined: Jul 2005
Posts: 624
"Above & Beyond" Member (500+ posts)
Offline
"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!
#39286 10-23-2005 07:11 AM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
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"
#39287 10-23-2005 03:28 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
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


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

:
#39288 10-23-2005 03:52 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
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)
#39289 10-23-2005 06:01 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
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 08:00 PM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
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"
#39291 10-24-2005 02:16 AM
Joined: Jul 2005
Posts: 624
"Above & Beyond" Member (500+ posts)
Offline
"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!
#39292 10-24-2005 05:57 AM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
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"
#39293 10-24-2005 10:42 AM
Joined: Sep 2003
Posts: 1,244
Patient Advocate (1000+ posts)
Offline
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
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5