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Re: Dad [Re: Vicky1] #198354
05-16-2019 07:58 PM
05-16-2019 07:58 PM
Joined: Jul 2012
Posts: 3,224
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,224
NYC
I’m sure they’re going to do the best they can. It’s just sometimes there may be some with difficult patients, different types cases. are usually more experienced in tgeae cases. It’s always good to get 2nd or even 3rd opinions without taking up too much time to choose. o w to be chose.

I’ve been turnedown for treatments a number of times, including that of the #2 rated hospital who is sometimes #1. Luckily, their not the only ones in this town, and can go anywhere!

I’m Cancer Free now after 10 years of cancer treatment


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






Re: Dad [Re: Vicky1] #198355
05-17-2019 02:10 PM
05-17-2019 02:10 PM
Joined: Jun 2013
Posts: 337
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 337
alabama
I don't think I could possibly say anything after Paul's exhaustive list. smile My first occurrence was just surgery, and the neck dissection to see if it might have spread in spite of the scans saying otherwise. When it came back that same year, then they wanted to hit it with all the radiation and chemo, after repeating the surgery. I think the surgery actually got it, and the radiation and stuff was just for their peace of mind more than it was for mine. But who knows. I'm here to talk about it now, which I suppose is what really counts. If it ever comes back, we'll figure out what to do at that point ... having been here for awhile, I know there are always other options to ask about, which is reassuring.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Dad [Re: KristenS] #198368
05-21-2019 03:24 PM
05-21-2019 03:24 PM
Joined: Mar 2018
Posts: 57
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 57
Maine
His radiation oncologist called today to say that because the surgeon got clear margins they werent going to recommend more radiation. She said that he is at a high risk for recurrence and that he will need to be followed really closely. If it comes back, she said the treatments available will be further surgery or chemo for palliative care. Again, she said that the survivorship is very low.

I got her call right after I left a meeting where I found out I am being laid off tomorrow, so I couldn't even process. I am glad he doesnt need to go through another horrible treatment, but am very worried it will recur again.

I want to puke.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Dad [Re: Vicky1] #198371
05-21-2019 05:37 PM
05-21-2019 05:37 PM
Joined: Jun 2007
Posts: 10,364
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,364
PA
When it rains, it pours! Im so very sorry you have gotten terrible news regarding your fathers condition and been laid off on top of it.

I know its not easy to avoid worrying about your father. Try stay busy with positive things that require concentration like reading a good book or working on a hobby. Keep reminding yourself your fathers surgeon got clear margins.

(((HUGS)))


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
Re: Dad [Re: Vicky1] #198374
05-22-2019 05:55 AM
05-22-2019 05:55 AM
Joined: Oct 2012
Posts: 1,117
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,117
Toronto, Canada
Please don’t fret about a recurrence. With medical advancement you never know what treatment will be out there in a couple of months. My husband was in a phase one trial for immunotherapy. At that point (back in 2015), the drug had only been used on monkeys. I believe by 2017/2018, the drug had been fast tracked and put on the market. There is so much research ongoing that the next treatment may we’ll be just around the corner.

In the meantime, please take comfort from the fact that your dad doesn’t need more treatment at this point. This will give him a chance to build up his strength and take the time to enjoy the things he likes to do. You can also take this time to make new memories with him/to add to your stores of good memories.


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.
Re: Dad [Re: gmcraft] #199041
09-12-2019 05:40 PM
09-12-2019 05:40 PM
Joined: Mar 2018
Posts: 57
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 57
Maine
Hi everyone! Just wanted to give a quick update. We had our first CT scan since surgery on Monday. Everything looked good! Nothing concerning! This is our first good scan, so we're elated! We go back in 2.5 months for the next one. So happy!


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Dad [Re: Vicky1] #199053
09-13-2019 02:08 PM
09-13-2019 02:08 PM
Joined: Jun 2007
Posts: 10,364
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,364
PA
CONGRATS, Vicky!!!! Im sure you both are so relieved!!! Thank you for such a great update. Thats the news we all like to hear 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
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