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Joined: Apr 2013
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Bart Offline OP
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Well, this sucks.

Not the on-going cancer issues or the other new issues only peripherally related to the cancer, but the fact that every every time I compose a long post (now I ask you, how often is that? Never mind, the question is entirely rhetorical as you must know by now�) something that causes the entire message to erase itself and close the thread, leaving me to exercise (my reportedly extensive collection of obscenities in several languages. but I digress, as I occasionally do.)

This time, I lost an introductory paragraph that invoked the spirit of Al Capp, and no way am I going down that path again.

So, Tuesday, I just dropped in (on my Post-latest CT conference with my MO) to see what condition my condition was in, only to learn nothing. Nothing is perfectly fine when you need it, but I actually needed (OK then, wanted) INFORMATION. That was absent in abundance.

My MO hates to deliver bad news, despite the fact that he knows it's all the same to me; I just want to know where I stand. When I called him on it, he danced around and finally muttered that "it looks promising, one tumor is down from 4cm x 4 xcm to a mere 4cm x 2cm." I immediately had the urge to break out the champagne, but then realized that was a 22 mile drive back home,so I stifled it.

I did learn one interesting thing, my upper colon has stopped cooperating with the rest of my colon, hogging the solid matter and passing nothing but various disgusting fluids on down the chain.

(Not entirely unlike some hippies I have known, handeling doobs...)

That was doubtless caused by adhesions that developed where a repaired bullet-hole stuck to the opposite side of the interior of the colon during the time I had a temp colostomy to allow infection-free healing. (I heartily endorse infection-free healing!)

Added to the fact that the same bullets caused a massive amount of neuropathy and the muscular sheath surrounding the colon no longer does much squeezing of material to move it down stream, it's blockage city.

Well, one can say many things about Mr. Murphy, but two things stand out, he is an incurable optimist, and...

I forget the other thing. Xin loi�

In any event, Herr M. was on the spot, and so when I got home that night, I inadvertently swallowed some phlegm down the pipe clearly marked "Do not swallow phlegm here."

Violent coughing promptly ensued, and so did a small, but somewhat "vocal" hernia on my lower-right abdominal wall. �

I strongly believe that the dry-heaves I experienced during the treatment with the SIRIspheres is the culprit. �Each time (half a dozen or so) that I was awakened by a strong urge to vomit, I was only able to dry-heave (except for maybe a total of a cup of clear liquid). �

What made this so remarkable is the sheer violence of the heaves, and the fact that there were around a dozen or more of them each time, all of significantly greater intensity than any I have ever experienced, �including recovering from my GSW. �

I believe this will require corrective surgery ASAP, I can't rebuild my body in preparation for the next assault on it by cancer (or cancer-treatment) and that's very serious in my book.

It's an interesting ride, for sure!


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: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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I know you have so much going on right now. It must be hard not to get overwhelmed. You have an excellent attitude that I admire.

Im so sorry Bart! Hopefully the surgery will be an easy one with a fast recovery.

Im also one who looks on the bright side. You have made some progress with the tumor shrinking. Thats very promising news. Hoping the trend continues and it will continue to shrink.

Best wishes!



PS... Im by far no computer wiz! Ive found by clearing my cookies and cache a few times per week and rebooting helps to keep my computer issues at a minimum. Maybe that could help you too???


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
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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Hope you get fast and effective treatment, Bart.

Maureen


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.
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Posts: 1,291
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Wishing you the best. It has been one long tough road and you been the best trooper we have here. Good luck, Bart.


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 2009
Posts: 1,406
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Bart, your attitude, humor and sheer courage continue to amaze me. You're a hero. And a very funny guy!

Sending every good thought.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Apr 2013
Posts: 319
Bart Offline OP
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Posts: 319
Dear Christine (my hero), Alpaca, Donfoo and David2;

Thanks very much for the kind words, you've no idea how much they mean to me.

The downside is that I have to buy new hats.

I'll leave it up to you guys how you want to split-up the costs... ;-)


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: 76
Supporting Member (50+ posts)
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Joined: Apr 2013
Posts: 76
Ha! A beret is nice and stretchable. I will send one your way. Best wishes for getting all this nonsense repaired, Bart. You need to stay in fightin' shape.

(What, you worry?)

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Joined: Aug 2011
Posts: 269
ngk Offline
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Posts: 269
A hero indeed! Wishing you all the best and no more dry heaves!!!


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Apr 2013
Posts: 319
Bart Offline OP
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Thanks again for the kudos, as I said, I really do appreciate them.

But I can't wear any "hero" label.

Heros are people who put their lives at risk to help save others. Nothing but my ego is at risk when I post, although I admit that positive feedback feels good and I know you meant well! And as usual, you make me feel happy, thanks!

Last edited by Bart; 05-22-2014 07:27 PM. Reason: never give a dyslexic a keyboard

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: Mar 2014
Posts: 34
Contributing Member (25+ posts)
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Joined: Mar 2014
Posts: 34
Hope you are doing well, Bart. You really should be a writer (or maybe I jumped the gun here and you were a writer of some sort?). You have such a way with words and your positive personality definitely shines through! Keep buying those bigger hats! People will always admire your attitude and your posts will no doubt generate some more unsolicited positive feedback smile. Anyway, as always, wishing you the best.

Last edited by kfisher; 05-27-2014 06:15 PM.

3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



Joined: Apr 2013
Posts: 319
Bart Offline OP
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Thanks, kfisher! Those are very nice things to say!

I hate to admit this in a public forum, but I've been trying for years (decades) to capture some of the elements that have made my life a very rich and interesting one (to me, probably not so much to others), but only have maybe a dozen captured. Some were funny, some were hairy and some involve cats, who are always hairy and often funny.

Some, like leaving Saigon by air (illegally, duh!) when the passenger terminal had every door in or out staked-out by two Vietnamese CIA agents with my photo and orders to pick me up for "enhanced interrogation." That was the other kind of "Hairy."

Some were longer versions than the Reader's digest version of stories in my intro, Like what it's like to get gut-shot, or a flail chest.

If you (or anyone) is interested, just PM me and I'll do my best to accommodate you. I don't want to waste bandwidth posting them here.

Bart


Last edited by Bart; 05-28-2014 02:14 PM.

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!
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