Previous Thread
Next Thread
Print Thread
Page 3 of 4 1 2 3 4
Mandy #191474 12-31-2015 10:11 PM
Joined: Nov 2013
Posts: 34
Mandy Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
thankyou,will have a lool


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Mandy #191478 01-01-2016 03:42 PM
Joined: Mar 2008
Posts: 404
Likes: 2
"OCF Down Under"
Platinum Member (300+ posts)
Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
Posts: 404
Likes: 2

Mandy,

I'm surprised your medical team didn't recommend chemotherapy combined with radiotherapy in Feb 2014 - seems standard treatment in this part of the world (just my opinion). Maybe your oncologist can provide answers.

Hope everything goes smooth for your first chemotherapy treatment next week.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Mandy #191481 01-01-2016 08:29 PM
Joined: Nov 2013
Posts: 34
Mandy Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
hi karen,it seems in australia its not that common to combine the two unless you are in a advanced stage.ive had it 4 times in 2 years and this is the first time chemo has been offered


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Mandy #191484 01-02-2016 05:52 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Mandy, I wish you the best in 2016, and with your treatment.

I had Erbitux and Taxotere, along with radiation in 2012. Erbitux or Cetuximab is actually not a chemo, but is a targeted therapy, a monoclonal antibody that works on the epidermal growth factor receptors (EGFR). It's also really an early immunotherapy drug, but I also refer to it as Chemo for simpler explanation.

I believe that Cisplatin is usually the preferred chemo, but Erbitux is now approved for first line, recurrent and metatastic treatment for head and neck cancer. A number of factors can be used in consideration for Erbitux use, other chemo for that matter, including patient co-morbities, kidney function, extent of disease, etc. Actually, Erbitux was said to be the least toxic of all when I was initially going through treatment in 2009, and the worst being the notorious facial rash, which was allegedly indicative that its working, which such thought has somewhat changed over the years. When I did mine, I found it not as easy as purported, but was doable, and recently, it is found that some toxicities, besides rash, such as mucocitus, is worse than Cisplatin.

As mentioned, pretty much the NCCN guidelines are used by the doctors, but are not set in stone. Chemo or targeted therapy can be used as a radio sensitizer to make radiation work better, and there have been quite a few studies on its efficiency by adding it to radiation, namely Dr Bonner, if you care to read further, in addition, there are quite a few discussions here about Erbitux if you look in the search feature.

Erbitux can be combined with other chemo's, as Induction Chemo, Palliative Chemo, as mono-therapy, but some reports I read mentioned disappointing findings when combined with Cisplatin or other platinum based drugs. Mine was with Taxotere, and recent reports show positive results with that, but I did have a recurrence a year later, so apparently it didn't work.

Erbitux was said not to work in about 5% of head and neck cancers, and there was no assay to test that in head and neck cancer patients, unlike colorectal patients, where they test the KRAS mutation since it doesn't work in 40% of those patients, so if they don't have the mutation they don't get Erbitux. There is a new drug given to help with EGFR resistance, and not sure if they do any new assays particularly for head and neck cancer, but I haven't heard of any, others, yes.

That said, the first week is usually the loading dose, 400mg, and every week thereafter, 250mg, along with a corticosteroid to help with allergic reaction. There are two black box warnings that your medical team will be on the lookout, which rarely occur, and usually during the first or 2nd infusion, and that is a severe allergic relation, and heart attack. Any unusual symptoms should be repeated immediately, and all such is usually explained.

The others are the notorious rash, which is indictive of an EGFR inhibitor, and us not to be used as findings the drug is working or not. The other was the mucocitus, hand and foot syndrome, dehydration, and I also needed a blood transfusion midway through. The rash may occur 1-3 weeks after starting, mine was after a week, which mine was controlled by minocycline, and there may be different ones at this time, and for the extent of rash, as mine was mild. The worst part, was the itching postures, especially on the arms, legs, back, scalp. I was told to use head and shoulders for dry scalp, dove soft soap for sensitive skin, as well as the aquaphor or cetaphil cream after radiation.

http://www.cancernetwork.com/head-n...inked-high-toxicity-head-and-neck-cancer

http://www.ascopost.com/issues/november-1,-2014/adding-cetuximab-to-chemoradiation-did-not-benefit-patients-with-advanced-head-and-neck-cancer-what-were-the-reasons.aspx

http://www.cancernetwork.com/head-neck-cancer/docetaxel-regimen-tops-cisplatin-head-and-neck-cancer

I hope this helps, and if you have any questions, just ask, if I can help.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Mandy #191500 01-04-2016 09:57 AM
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Yo. Paul. Happy New Year. you stuff off PM, send me a contact email. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I didn't realize that, Don, so I just updated it. Happy New Year!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Mandy #191534 01-11-2016 11:37 PM
Joined: Nov 2013
Posts: 34
Mandy Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
ive had 2 doses of certuxamab so far,rash is starting to appear on my chin,headache and stomache cramps,but dont feel to bad,started radiation again today as well,i was meant to be having 35 rads but im only having 21,dont know why as dont see my oncologist til friday??. they cut the face out of my mask which made it alot easier,very quick 7 beams only 20 seconds each


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Mandy #191535 01-12-2016 03:02 AM
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Glad the rads are going well. Without the face part pressing down it would be a lot more comfortable.

Best wishes.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Mandy #191657 01-30-2016 12:58 AM
Joined: Nov 2013
Posts: 34
Mandy Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
7 rads left and 2 certuxamab left,going well,rash annoying and suffer headaches but so far so good,havent needed a feeding tube yet either,i hope this works


nov 2013 ssc of buccal mucosa stage 2
jan 2014 neck dissection because of cancer in lymphnodes
feb 2014 6 weeks of radiation
march 2015 tumour buccal mucossa stage 4
june 2015 lower jaw removed
nov 2015tumour in left node on neck
jan 2016 radiation and chemo to commence
Nov 2015 left deck dissesction,1 posative node
Mandy #191658 01-30-2016 05:31 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hang in there, Mandy! Sounds like you are doing pretty good with everything. Usually its about this point where it gets pretty rough. Keep pushing to take in enough daily calories and water to help you get past these last few days. Take it day by day and soon you will be past the hardest part. We are here to lean on, good luck!


Christine
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
Page 3 of 4 1 2 3 4

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
Topics18,166
Posts196,921
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