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Joined: Apr 2013
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Hi again, JohnUK,

I've been very low profile here lately myself, due to my own recent treatments.

Since posting about it in this thread earlier, I've had the same procedure on the left lobe of my liver (I wrote just after the Right lobe had been packed with radioactive beads called SIRI-spheres.)

I had no noticeable side-effects from the right lobe; but the left (two weeks later,) because it's quite a bit larger than the right, gets quite a bit more of the radioactive beads.

Enough more that the side effects (pain, nausea and major fatigue and weakness) are indeed, quite noticeable. In fact, they quite handily kicked by butt seven ways from Sunday. Enough so that I lost another 9+lbs. Now that doesn't sound like much, but my body fat was down to less than 10% and the loss was nearly all solid muscle.

[Everyone reading this nods sagely and observes "That boy should practice what he preaches..."] Very true, my friends, do not forget adequate nutrition - 2500 cal/day.

The experience is quite different that that from the machine, where you get 15 minutes/day; this way you get it 24/7.

OK, that's where I've been. I am well on the way back!

I've been going to the gym for some time every week since the procedure, but am only now able to do useful work there. I can see my body responding to the additional nutrition I am able to feed it, now that the (short lived, couple of days or so at most) pain and nausea are mostly in the past.

Until today, my workouts were drastically curtailed because every time I'd do a set of pushups or pullups, the exertion would bring on the nausea and I'd have to call it a day. Today, I got three sets of each: Pullups, pushups and dips! And no nausea! Fatigue is still a problem, but becoming less so. Woo hoo!

Of course, my sets were only 10 reps (instead of my usual 20) for pushups, and 3 reps for pullups (But HEY, those were perfect Airborne Pullups!) but I'll get back within a couple of months or so.

One step at a time, brothers and sisters, one step at a time!


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: Sep 2006
Posts: 8,311
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One day at a time Bart. Hope everything continues to improve for you.


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.
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Thanks, and Merry Christmas, David!

It's all good, brother! I am definitely on the up-swing and recovering nicely.

I've extracted my head from my fourth point of contact and increased my nutritional intake appropriately.

As I said, it's all good. Every day looking down at grass is a good one!

Merry Christmas and a very Happy New Year to all!

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: Jan 2013
Posts: 57
"OCF Canuck"
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Joined: Jan 2013
Posts: 57
Merry Christmas Bart


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
Joined: Apr 2013
Posts: 319
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Posts: 319
Thanks, Doolittle, and the same to you!

And the same to everyone here in our extended family!


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: Sep 2013
Posts: 32
JohnUK Offline OP
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Joined: Sep 2013
Posts: 32
Hello All,

I have been laid out and having a miserable time, better now. Rads finished end of Nov and I was OK for a couple of weeks then got a big hit, skin flaked form neck but luckily all good beneath so no burns outside. Inside was different, a couple of real whoppers, one on tongue and another high left in throat so spent mid to late Dec on soup and bread loosing 30 pounds.
Had three weeks max morphine and patacetomol.
Anyways, that's all done, had an all clear in Jan at my first check up so allowing for surgery in August I have had no detectable cancer since they had me under the knife. Next check Monday Feb 3rd.
The fatigue thing has caught up and unusually from feeling very pumped up through treatments and after (must be the body and mind being on full alert) I have done lots of the sleeping thing.
Neck is stiffer than usual so doing the exercises and unfortunately have a very obvious wobbly chin, they call it a dewlap here in the UK, its collection of lymph fluid resulting from neck dissection and rads. Apparently this starts to clear up but can take a few months.
Told have PEG out in next couple of weeks, never needed to use it so lucky there) which means I can get on with some fitness work too.
Has anyone here experience of the dewlap, its a common side effect. Massage apparently can help but I am conscious of lots of unregulated people offering 'beauty' treatments to help lymph nodes drain when in fact I have pretty much lost all the nodes on left side.
Hoping everyone I have messaged is doing well and sorry for being away a few weeks...was utterly whacked by the end Dec three weeks getting through the burns on the inside of mouth and around tongue.


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
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Hey Bart
I trust you are well.. the rads got me in Dec, week 2-4 post radio finished I got big ole burn on tongue and in mouth so had two weeks living on soup and feeling shattered. Cleared up first week Jan and now just damn fatigued. Develop done of those floppy chins that apparently will sort itself out over weeks or months ahead otherwise looking forward to a good review at my second monthly check next week. End of Feb will be six months from surgery and so far no sign of any cancer since.

Hope you are doing well.


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Apr 2013
Posts: 319
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Posts: 319
Hi John, thanks for the kind thoughts!

Brother, I am delighted to read that you are handling this so well! Not surprised, but definitely delighted! You are definitely a survivor!

I've actually begun to see some progress in my rebuilding work, I've regained 3/4 of the weight lost from the last procedure and I've started to add push-ups and pull-ups (tiny gains, but real ones.)

As the Davidcpa said, one day at a time. And for the record, I'm enjoying each of them.

Last edited by Bart; 02-02-2014 11:14 AM. Reason: misspelled David's handle

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: Sep 2013
Posts: 32
JohnUK Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
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Joined: Sep 2013
Posts: 32
Hi People,

Still battling along, had a whack this week, lots of fatigue and its starting to lift but felt steamrollered - and sleep pattern gone completely wonky. Bigger chin! Doing the throat and neck exercises, THEY WORK!

Hey Bart, impressed you are working out. Good to hear you hanging tough and enduring - that's what most of this is, endurance testing I think. If one can shoulder discomfort and has a mind set not to worry to much about something that has an end in sight then it can be done.

PEG out next week, that will make me feel less 'sick', never needed it. I lost 20% of my weight but had gone overweight before the start. Had my second monthly check last week, all clear, end of Feb will be six months from operation without detectable disease but elected for precautionary chemo and rads and don't want to go back again. I have been put on six weekly checks now. Early days but a six month mark is encouraging if not too much to get carried away with...

Still a bit sore and getting left side back to work chewing. It feels notably strange!

All the best to you all and will check in soon.

John



Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Oct 2013
Posts: 559
Likes: 1
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Posts: 559
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Very nice update John, really great to hear the good news. I know getting that PEG out will make you feel even better.

I just realized I have my first 6 month checkup (since surgery) tomorrow; so, I'm right there with you.

You're ahead of me some as I haven't started doing the upper body rebuilding thing yet, but have kept up the legs training via walking and lots of dancing.

I don't want to steal your thread, so I'll end with a hearty good luck, and don't be a stranger.

You might consider starting a new thread in the Immediate Post Treatment forum. I expect others will be interested in seeing how you continue to progress in recovery.

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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