Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
EMTK3 #193675 01-03-2017 07:15 AM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
Thanks Tammy! That's a very encouraging story. I am just going to take a breath and stop getting all twisted. Happy to hear your husband is still cancer free!!


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193689 01-04-2017 07:25 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
Hi Ed,

Yes, Squamous Cell Carcinoma, SCC, is a very common type of cancer cell effecting cancers in the head and neck 90% of the time, and so was mine. Back then I didn't even know who an oncologist was so no worries there.

I was going to mention watching the food channel to help with your appetite, but see you like to cook like myself. I think cooking or the idea of cooking helped me recover during my many treatments. I got a big kick when I was once "foodie of the week" on QVC's In the Kitchen with David with a picture of me on TV making a pizza pie. I have also used coffee, marinol, steroids, fat/sugar, wine in later years, exercise and others to help increase my appetite, and gain weight.

Sometimes I say the heck with it too, probably worse words lol, but dust off, and continue to carry on to the next day. It's a normal feeling, and just as long as it doesn't interfere with other aspects of life, treatment, recovery, it's not a bad thing.

It's interesting that you mentioned having had Hepatitus C. Last spring there was a report of an increased risk, 2.6 fold increase above average, for head and neck cancer with hepatitis C, so maybe now doctors can monitor this area with future patients having had this condition.

Good luck with the PET/CT. The facility should give you preperation instructions if you never had this scan before.


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






PaulB #193692 01-04-2017 08:34 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
Thanks Paul. I have had the PET scan before. It gets a little uncomfortable at the end because you have to pee like a race horse.

That's pretty cool you were on the cooking show! My wife and I do watch a lot of cooking shows. I had to google marinol and got a real good laugh as I thought I knew every name for it.

The Hep C connection is interesting. I kind of thought I was just having a run of bad luck 😄😄.

It does get frustrating sometimes. You don't know what you have till you don't have it anymore. A little thing like saliva and swallowing a mouthful is an epic adventure. I have found that I have full taste for a toasted English muffin with a ton of melted butter on it. Seems to be the one thing that I get the same pleasure from as before. Maybe I'll try some lobster with butter this weekend. That would be glorious if I could taste that!!!

Thanks for the feedback!

Ed Kane


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193730 01-13-2017 08:45 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
Got some great news today. PET scan results show no sign of cancer. I feel like a huge weight has been lifted off of me. These last 6 months have been a nightmare. I am so grateful to all of my doctors and medical science for the advances they have made.

I realize that it ain't over till it's over but I am elated at having a second chance.

Thanks to all of you on this site for your positive support. Hopefully I can contribute back to this community.

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193733 01-14-2017 12:08 AM
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Oh my, this is beautiful news ! Sure made my day here and I can only imagine how relieved you are right now. Do your "happy " dance, you earned it !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

EMTK3 #193735 01-14-2017 05:54 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
Congrats Ed!!!! I bet you feel so much better!!! Please stick around our site. We love having survivors to share their experiences with others who are just starting out. We're one big extended family smile



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
EMTK3 #193736 01-14-2017 07:32 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Congratulations! The best news possible!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
EMTK3 #193746 01-15-2017 08:54 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
Great News, Ed! Hope you have that lobster soon too!


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






EMTK3 #193756 01-15-2017 11:56 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
That is wonderful news Ed. Hope you and your wife are celebrating.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
EMTK3 #193764 01-16-2017 09:15 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
Thanks everyone. Went out to dinner Friday night for the first time in a long time. People were looking at me like I was some kind of nut because I kept taking swigs of my pink magic right out of the prescription bottle. And yes Paul, I had my lobster! Later that night I just started crying. Out of the blue. I have a 19 month old granddaughter who means the world to me. Now I can watch her grow up. What can I say?

I will be sticking around this site. You are wonderful people.


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
Page 2 of 3 1 2 3

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