| Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | My marathon of dr visits, PET/CT, and sonogram starts on Monday.
8/5 Opthomologist. I don't expect any changes. Going to ask about a colored contact lens for my blind eye that is a different color, but it get better thsn it eas, but my pupil is still white. I would probably have to see an eye doctor for any contact lens lol. Just learned I can't see 3D movies when going to see Superman, which is no big deal, but good to know. You need both eyes to see in 3D. No wonder I thought the 3D TV's were junk, and never seemed to work in the stores.
8/7 Nephrologist. So far, creatine level is going back to my baseline, which is not that good, 2.9, but hopefully stays off any therapy, dialysis. I'm stage 4 chronic kidney disease, GFR is 22, close to stage 5, and going to ask about that.
8/14 PET/CT probaby my 13th. This one is a milestone. If clear, this will be my first clear scan, after any post treatment scans, which mostly are all are clear anyway, in 4 years since I always had recurrences before that.
8/15 ENT visit. I'll get my PET scan results. Actually, I'll pick up my own copy at the testing facility to review before my appointment. Need some quiet time for that, maybe quick thinking based on results. If the results are good, I'm going to ask about my nose, saddle nose, boxers node, which looks broken from the carlidge loss or breakdown at the bridge of the nose from lack of blood flow, when I was hospitlized from chemo. While I'm at it, I want to ask about my pec flap, which left me with a lopsided chest, big scar. I wonder if they do chest augmentation for men? I'm getting vain lol. Then my teeth, which all need to be removed, I know, due to radiation, althought it is the dental oncologist, Maxio something lol, who is in the eame dept, but at least get the ball rolling with my ENT
8/19 RO, MO follow-up on PET results, blood test. Last TSH was out of range. I'll See what happens.
8/20 Sonogram of the Kidney area from the kiddy stone.
8/27 Urologist results of sonogram, PSA test
8/29 Local MO blood tests review, PET review. I doubt I need a shot of procrit. I can feel its not low, and last test the hemaglobin was in the 10 range.
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
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | you really have the sheer tenacity to live and thrive like few others. When I first arrived, your posts scared the crap out of me but now I find great inspiration in your will to march forward with such a tremendous load of adversity. You really are a brave and strong soul. The best outcomes to you Paul. 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) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks Don. Few things can stop me now, except cancer lol. I'm back in the gym getting stronger each day. Walking in the park, not far, but baby steps. I couldn't walk for almost a year, now walking 200 yards. Couldn't lift a spoon to feed myself, and now lifting weights, and holding back on the amount really, so I don't pull any muscles, but going to burst out in a few weeks. My weight was down to 130lbs from chemo, and now I'm 195lbs. I just hope for no more set backs.
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
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Wow Paul, what a line-up of medical attention you have ahead this month! We are all pulling for you to have a clean scan, if ever a guy has earned one it's you.
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thank you Mamacita. This has been pretty much my schedule, even more sometimes, every month for the past 3.9 years. I'm in pretty good hands though.
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
| | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | Hoping for the best Paul! Let us know how it goes. Great to hear you have been lifting and getting out. I need to get back to the gym. Still down 40+lbs of muscle since pre tx.
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Please let us know how it goes. You have been through so much, I am hoping for good outcomes in every area for you.
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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks Andrew, Gloria. Feels good to get back in the gym, although, I've been on and off since April. The weight will come back, muscle has memory. I lost 100 lbs for Tx, but gained 50 back on purpose with my seefood diet lol. Hoping for continued NED also. I don't know what more can be thrown at me, but life is full of surprises.
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Two dr visits down. Saw my Opthomologist who did the routine eye dilation. I asked about a colored contact lens, and said to hold off for now. The white pupil is from a cataract developing, but is not going to do surgery since I'm blind in the eye anyway.
Nephrologist is happy with my blood work the past few months, and creatinine, GFR is pretty stable, and that's why he is not concerned even though I'm early stage 4 CkD. Said I should not go any higher in weight, 200lbs now, since that will put a strain on the kidneys. Said to just continue what I'm doing, but gave me Bp medication since it has been steadily high, probably from the acute kidney failure a few months ago.
I developed an abscess in my gum the other night from irritating my tooth. My neck, under chin swelled up to. Went to the doctor, and was given antibiotics. I hope this doesn't effect the PET scan, but may with the swelling. Can't chew too many foods now.
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Low carb diet today for PET scan tomorrow. Started off with scrabbled egg for breakfast, coffee, for lunch ordering out Chinese, egg drop soup, shrimp with bean sprouts, and for dinner a hamburger, no bun, and some type of vegetable, maybe creamed spinach. No food, water or meds after midnight.
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
| | |
Forums23 Topics18,170 Posts196,933 Members13,105 | Most Online458 Jan 16th, 2020 | | | |