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#45872 08-22-2005 02:30 PM
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Hi Michael,
I don't believe Emend is prescribed for nausea and vomiting already in progress. It is taken to prevent it. I think it is taken before chemo and on Day 1 and 2 post chemo. If you are vomiting you may need a compazine suppository rather than anything by mouth. I am really sorry you are having such a miserable time of it. I know with my husband there was a huge anxiety component with all the changes occurring in and around him and his felt lack of control. Any luck with Ativan? Anyone suggest Benadryl? We are using a continuous pump for nutrition at night that allows John to not worry as much about hydration/food during the day on his offdays. What is the reason for the gag problem/tonsil problem? With your gag problem/lack of appetite, you might want to ask about that to increase your energies. Keep a good thought for us - John gets his second chemo tx tomorrow.
Peace, Janet


Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
#45873 08-22-2005 02:40 PM
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Michael --

Wow, I cannot imagine why they did not give you Zofran (or similar) from day one, with such a strong emetic drug as Cisplatin! Barry's getting Carboplatin, also a very strong emetic, and was given a Zofran script a week beforehand (he also uses it for the Ethyol) as well as a sample of Anzemet which is an even more expensive drug of same type. The downside is that they are all very expensive -- $30-40 a pop for Zofran if you do not have pharmacy coverage. (Or buy it in Canada <gr>)

Our chemo nurse says that these new anti-nausea drugs are "complete breakthroughs in treating chemotherapy nausea" and work on the serotonin uptake system in the brain. They can be taken with Compazine as they operate in a different manner -- but Barry tried the latter and didn't really like how it made him feel, a familiar complaint. He uses Reglan before eating and that and Zofran seem to control the (Ethyol) nausea. He gets a strong 24-hour IV anti-emetic on chemo days (Wednesday) and so far has not had to take anything else --

Just tell the nurses you need more effective anti-nausea meds and insist that you get them...

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!
#45874 08-22-2005 03:06 PM
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Michael and Gail,
John actually got Emend for 3 days which is the serotonin uptake nausea drug I think you are referring to (also in the same class as another antinausea drug called Kytril). He still felt queasy and nauseaus for several days but never vomited with the first dose of cisplatin. Emend costs about $100 per pill! We start another round of Emend for 3 days and Decadron for 5 days tomorrow with our next adventure with chemo and will use ativan and compazine as backups. Hope soon we will be talking of pleasanter things than N&V (we'll probably move on to constipation)!
Janet


Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
#45875 08-22-2005 03:51 PM
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My dad took Emend and had/has NO NAUSEA. That is one of our positivies-works wonders for him.


Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
#45876 08-22-2005 11:16 PM
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Hi Michael,

I also took Emend plus Zofran and, I believe, Decadron (at least I know it started with a "D"!). Anyway, although I felt nauseaus for a couple of days after chemo infusion, I never threw up. Keep asking the doctors about different meds. As you can see, each med works differently on each person.

Good luck and hang in there. It's a rough / tough battle, but one worth going through!

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#45877 08-23-2005 04:37 AM
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I forgot about the decadron. They also gave me that during and after the second chemo (once it had been established that there was a whole bunch of stuff that didn't work from the first chemo). Decadron is a steroid, however, if I'm rememebering correctly, which means it will make you feel better but then you may feel worse after you go off it later (which I think was true for me too but thre was so MUCH making me feel bad then).

Zofran is expensive. My insurance covered it but the first time I got a scrip filled, my pharm insurance had just changed and they couldn't find me as covered in the computer so we got to see what we would have been charged for 20 Zofran pills had we not had insurance before the glitch was fixed....$900!!!! I suspect that some places don't presrcibe it at forst because some people don't need it--they respond fine to the other anti-nausea meds that are not so expensive.


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"
#45878 08-23-2005 06:28 AM
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Yes, it is very expensive and for folks on Medicare, at least until next year, a problem BUT...it is really important that people get through their treatments without breaks as much as possible, and without getting into a really debilitated state -- so compared to other things most of us might spend money on, it is cheap! (And we are both retired, Barry on Medicare, I have state pharmacy insurance but it doesn't cover him -- so we completely relate to the issue). Dealing with Cisplatin, one of the very worse offenders, I think that the need for the best anti-nausea drug should have been anticipated. Can't imagine anyone doing it on Compazine, maybe some have but...

Interestingly, the serotonin drugs apparently do not work well for situations like seasickness, whereas compazine does.

Zofran is about 1/3 to 1/2 the price in Canada -- btw.

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!
#45879 08-23-2005 03:03 PM
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Zofran (you're right all, very expensive!), seems to deaden the nausea by about 50 to 70% so far, so hopefully it will contineu.

The fatigue is still cripling, and now I am having a problem swallowing. I think it's combined with the "gag" problem and creates more misery.

My neck is sore and tender, and my throat is very tight feeling.

Guess it's expected until the next chemo...uuugh!


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.
#45880 08-23-2005 03:15 PM
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I can't get my brain around a $900.00 perscription. Perhaps we need to be, as a group, lobbying like mad for answers to why these meds cost so much. Amy


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

:
#45881 08-24-2005 12:38 AM
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Michael --

Don't think about the cost, just pop another Zofran 8 hours later if you need it. You can also (per our Dr.) take Compazine as a back-up as it does not operate in the same fashion and does not interact negatively with Zofran, although check with your own Dr. or nurse on this of course.

What are you doing for your mouth (inside?) -- try gargling with cold (pure 100%) aloe vera and also, use Gelclair if necessary. Assume you are using Radiacare gel or aloe, and then Biafine on the outside of your neck.

Watch for infections in mouth as it's getting radiation and your immune system is getting compromised due to the chemo -- Barry got a thrush infection (caught almost immediately and he is responding to Diflucane but still made back of mouth very sore so it was painful to swallow.)

Try to get moving a bit, even short walks now that the weather is better as it is necessary to combat fatigue. Drink lots of water to facilitate getting the bad stuff out of your system.

Good luck, Barry is on week three as of today!

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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