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#182462 06-15-2014 11:07 PM
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Alpaca Offline OP
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Exactly four weeks since I finished and several things have happened. I've recovered some taste, lost the horrible muddy taste and have started to eat soups and soft foods like spaghetti. I still don't enjoy these foods but they're bearable, I'm hungry and it's progress. My formula thick-shakes ARE starting to taste good because sweetness was always one of my residual senses of taste.

The trismus seems to have eased a bit, making it easier to brush my teeth and my energy levels are getting back to normal. I can mow my little lawn and walk for 40 minutes.

On the other hand the swelling (on the inside), tightness, tingling and numbness in the operated and radiated side of my face/mouth has become a bit more intrusive. It's not a constant sense of discomfort, waxing and waning as the day goes on, but quite a horrible sensation. I get outbreaks of pain in the area too: comes and goes.

Mentally/emotionally I've been up and down. I'm working on that. I've ordered a recommended book called "Full Catastrophe Living" and intend to learn more about relaxation and mindfulness, living in the now.



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.
Joined: Apr 2013
Posts: 319
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Posts: 319
Hi Alpaca,

My favorite author/teacher is a Vietnamese Monk by the name of Tich Nhat Hanh, is very probably the last word on the two subjects; Mindfulness and settling the agitated mind.

Here's a link to his wiki, a list of his writings is on that page. You can click on #5, Writings, to get to that list.

The Miracle of Mindfulness, Rider Books, 1991, ISBN 978-0-7126-4787-8

And another closely associated with the one above.

Finally, here's his main Wiki link

http://en.wikipedia.org/wiki/Th%C3%ADch_Nh%E1%BA%A5t_H%E1%BA%A1nh

Good Luck, Alpaca. You're one terrific Caregiver and I am proud to know you!

Bart

Touching Peace: Practicing the Art of Mindful Living, Parallax Press, 1992, ISBN 0-938077-57-0


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Oh Shoot, I forgot that pasting URLs is an No-No! Mea culpa! Sorry ChristineB, it was unintential.

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Thank you Bart. I'm definitely going to read the Miracle of Mindfulness.


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.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Congrats. I noticed my first taste improvement at 4 months also. First year of recovery is tough but it does get better from here on out.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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Joined: Oct 2013
Posts: 559
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Congrats Alpaca on treatment completion. And now the rest of the journey begins. I had very few problems during treatment so I thought post treatment would be easy too ... boy was I ever wrong.

You started getting taste back much earlier than I. Don't assume it will stay that way, as we all have ups and downs, none of this recovery stuff is linear. I didn't have any trismus, but I did hold on to mucositis for a month or more after rads ended. It's just all so different for all of us.

Still, we're all glad to count you in the survivor's group.

Keep fighting
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good


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