#18090 08-16-2005 02:50 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 | HANG IN THERE, Michael.[and Seth]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
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#18091 08-16-2005 11:00 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Barb, right now I wouldn't even want to think about eating Starting around 6:00 PM here yesterday the naseua waves began. Since my last post around 8:00PM, I've thrown up several times. I took one of the Compazine, and it helped after a while for about 3 or 4 hours. I took another about 5 hours after the first. The heartburn has been outta sight too! Between it and the vomitting I haven't had more than a few sips of water, and am worried about dehydration setting in. Rolaids doesn't touch the heartburn much at all. I have a liquid Zantac, which helps a little after a delay. UUUgh! I can't imagine how I'll manage to lay on the Radiation table long enough without puking today.... :-( It's 6:40 AM here, so I'll call the Dr's office at 9:00 AM and ask about Reglan, I think that may be the best choice next. I guess this is just the beginning...
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.
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#18092 08-16-2005 11:58 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Hi Michael --
You may want to ask about a longer-acting anti-nausea med -- Anzemeb or similar -- Barry took one of those (a sample) before one of the amiphostine days (he doesn't get amiphostine on chemo days) and it worked for much longer. He didn't need to take any other meds that day.
We also posted to the forum elsewhere and got some anti-nausea suggestions, one was acupuncture and I see from a flyer in our patient's package that Hopkin does acupuncture for nausea from chemotherapy (as well as for pain and dry mouth) so we may try this if Barry starts getting the "amiphostine persistent queasiness". I am a great believer in acupuncture since I had it for a neck injury. See if it's available to Sloan.
The problem is -- you have to get your meds before you are sick and this is hard as it can creep up. Best to take regularly. Take another Zofran 8 hours after first, we found compazine didn't really help that much. And eat what appeals.
One tip, don't eat a favorite food within 2-3 hours of chemo because if you get really sick your brain will forvever link the two and you will be "off" the food for a long time, if not life.
Btw, amiphostine is the same thing as Ethyol -- the latter's just Medimmune's trade name for the drug.
Hang in -- Barry's made it through first week and is feeling OK so you can do it too!
Best, 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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#18093 08-17-2005 12:07 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2005 Posts: 54 | Hi Michael, John's about a week ahead of you with the same dx except left tonsil. He too did not get Amiphostine. He experienced the same things you describe the first few days- had a terrible fear of vomiting at radiation but the techs calmed him and got him through it. He took a lot of Compazine but I think what really helped was extra Ativan those first few days. He couldn't think about eating and lost weight - we didn't get the Peg tube til 3 days after the chemo which I don't recommend since he was already weakened (our fault - they recommended it earlier). It really gets better - he adjusted to the Peg (the burps go away) and the chemo effects subside. We're enjoying just going to radiation (no side effects yet) before the next round. What's working for him now is 3 cans of tube feeding (jevity 1.2) through the Peg at night via a pump slowly (75 ccs/hr). He then doesn't feel as full and eats whatever he can during the day - mostly high fat fast food to up the calories. Just wanted to say hang in there - you will get relief. 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.
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#18094 08-17-2005 12:20 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2005 Posts: 54 | Oops, Forgot to say we switched to Reglan (you have to stop the Compazine). I'm not sure if the nausea was going to subside anyway s/t time passing but the reglan did seem to improve John's symptoms of constant fullness whenever he ate even a little. It improves the transit time of foods passing through the system. Take care, 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.
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#18095 08-17-2005 04:19 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 | Michael, That "fuzzy" feeling you have is probably from the compazine. It definitely had that effect on me--only it was kind of like fuzzy x 3 because the regular compazone pills did nothing for me so I was taking compazoine suppositories. My chemo nurse said it affects a lot of people that way. Switching off comapzine to Zofran made that fuzziness go away.
Do be sure to take meds before the nausea gets bad--don't let it ever get really bad because then you are limited to something like a suppository in order to keep the med down! I also second the recommendation of taking an Ativan (in my case I justdid half an Ativan since it had a strong effect on me) about an hour and 1/2 before rad. Ativan helps calm your stomach but it also helps calm you in general and amde me much less anxious about barfing during radiation--even though the Amifostine made me nauseated all through radiation no matter what else was going on.
Anyway, I'm sure you've also been told that the first two days after chemo are the worst for nausea, then it starts to get better (though slowly in my experience). I hope it gets better for you quickly!
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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#18096 08-17-2005 11:15 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | I'm now on Metoclopramide (Reglan), 10 MG 3x daily, instead of the Compazine.
It seems to working a little bit better, but I am still throwing up and unable to keep even water down :-(
I had my 3rd rad tx today...was sick on the table.
I have some Ativan, so I might try that tomorrow before the 10:am rad.
This is so miserable, and the worst is yet to come.
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.
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#18097 08-17-2005 11:42 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Seth just made me some crushed ice chips, and I'm able to slowly nibble on this. It tastes and looks like snow...(thank goodness it's not yellow Hopefully, I can get some hydration cause I really REALLY dont want to go to the ED for another fricken IV! Thanks for all the advice and inspiration to everyone on here!!!!!!
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.
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#18098 08-17-2005 11:45 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 | Not necessarily. Remember you are at the absolute worse point for chemo-induced nausea right now. What isn't working well at controlling nausea now might work better in the next few days (though I have to say they also tried Reglan with me and it didn't do much good).
Remember there's a good bit of experimenting with the combo. that works for you that may have to be done. I am sure those chemo folks have some other ideas up their sleeve if what you are on now doesn't work well. And do try teh Ativan but be sure you have taken it at least an hour and 1/2 ahead of time to get the full effect.
Hang in there Michael--you know you can come here and whine anytime and you'll be heard by people who have been there too. You aren't alone in this.
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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#18099 08-17-2005 11:46 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 | oops.. you slipped another post in there. "not necessarily was in repsonse to "the worst is yet to come".
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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