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#195579 - 01/05/18 10:06 PM Re: Chemo Drugs for Head and Neck [Re: trisha]  
Joined: Jun 2013
Posts: 241
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 241
Trisha, I'm late to this thread, but your questions are NOT stupid. Sometimes doctors or nurses can make us feel that way, but no question is a stupid question. (Well, not most of them. And no medical question, ever, when it pertains to you or a loved one.)

When I had my chemo and radiation, they had some add-ons that were supposed to help me deal with the treatments. I, being the obsessive type, read over the paperwork while they were hooking me up and found some of the fine print disturbing. One of them very clearly said, "Do not give to patients with a good prognosis." The nurses told me they had no idea why it said that. I told them that, in that case, I wasn't going to sign off on it. So they didn't give me that. Very simple. I wonder to this day if they ever got an answer to that question, or if they hid that fine print from other patients, or what. Wish I'd had the presence of mind to jot down what the thing was, so I could do research later, but I was also post-surgery and scared and all that, so my brain was mush. But it was still a fair question.

As for the 'death' thing ... half my meds probably have that as a side effect somewhere. Falls under allergic reactions, probably, when it doesn't fall under a black box depression warning. It's not something doctors should joke about, but it can be an issue just because of the nature of medications. If they can't give you a reasonable answer, they need to do some looking or at least some comforting. I just added a new med to my allergy list ... Zofran, the magic standby for everyone's nausea ... and when I did some reading on its side effects, they are pretty ghastly. (Don't go there.) It's a wonder drug for most folks ... but it's now one I can't take. Oh well. But it just goes to show, what it might do and what it usually does can be totally different things.



Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#195738 - 02/18/18 07:49 AM Re: Chemo Drugs for Head and Neck [Re: PaulB]  
Joined: Nov 2017
Posts: 20
trisha Offline
trisha  Offline

Joined: Nov 2017
Posts: 20
Thank you-- I didn't know the oral cancers don't say remission. Is it more about learning to live with it?

#195739 - 02/18/18 07:52 AM Re: Chemo Drugs for Head and Neck [Re: PaulB]  
Joined: Nov 2017
Posts: 20
trisha Offline
trisha  Offline

Joined: Nov 2017
Posts: 20
I tried to read your article, but it said it was removed.

#195740 - 02/18/18 01:01 PM Re: Chemo Drugs for Head and Neck [Re: trisha]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
Trisha, which link was removed? If it was one of OCF's pages, newer info could be available. The main OCF site is constantly being updated to ensure the most up to date, relevant info is available.

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#195743 - 02/18/18 09:35 PM Re: Chemo Drugs for Head and Neck [Re: trisha]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117

I think Trisha was referring to my previous posts, and attachments. All of them i could open again, except the one from OCF News Feed about Laetrile. I looked on google for the article, and found it, which is attached below, but could have looked on the news feed from several months ago.

As far as head and neck cancer remission mentioning, which we don't necessarily use, it's no big deal, and know what that means, but our cancer is not something to get used too. Either you have cancer diagnosis, going through treatment, and cancer is then cleared or not through treatment or reached 5 year mark to be cancer free, and unless all treatment failed, and no other curative treatment is possible, and only palliative treatment is available, then that would be something one has to get used to or deal with.

I think that can be far off for most cases as more doctors are experienced in re-treatment. I'm lucky, and happy to say, I have been treated multiple times, and clear for 4 years now. At 5 years, i even forge the date, I will be considered cancer free, but I don't think about that often, and will always be a cancer fighter.

Last edited by PaulB; 02/18/18 09:38 PM.

10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent

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