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Update #198176
04-23-2019 05:12 PM
04-23-2019 05:12 PM
Joined: Mar 2018
Posts: 72
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 72
Maine
Hi all,

Just an update on dad. He completed his radiation treatments in August and was doing well. Had a little bout of swelling about two weeks after finishing radiation, but our radiation oncologist gave him some antibiotics and it went away. Then, he had a tooth fall out right near the place where his fibular flap connected to his actual jaw. Then, he had an abscess, which blew out and drained. Then, we went to a new ent, who sent us back to Boston, where our surgeon removed the infected tissue and biopsied a patch and the bone. Cancer had recurred in the superficial soft tissue, but was so new it wasn't even detectable on ct scans, and he had an antibiotic resistant e. coli bacteria in his abscess. So, here we are about 7 days after his third surgery, having another section of bone removed, infected tissue removed and his chin reconstructed with bone from his shoulder blade and skin/muscle from his back.Dad's doing really well. Looks a lot better than I thought he would, too, which was a relief. Its hard to explain how scared I was that he wouldn't look like Dad anymore. I would love him anyway, of course, but I was still worried sick over it, and his quality of life. Dr said he got negative margins and that the cancer hadn't begun to affect the bone. I'm afraid to ask after having done this for a year now, but what happens now? Just hope it doesn't come back again? Are there successful treatments for oral cancer after you've already done chemo and radiation?


Dad was 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!
8.6.20 Clear CT!
Re: Update [Re: Vicky1] #198177
04-23-2019 07:50 PM
04-23-2019 07:50 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
((hugs))

Glad he's doing okay so far, and that you are too! And it's perfectly reasonable to worry about what your loved one will look like after. It took ages to get my husband to 'fess up that it was one of his worries ... he doesn't like my look without my dentures in, but he's working on dealing with it. Doesn't mean he loves me any less. (I was just glad he got to a point where he could talk about it.) Anyway ... just to show, you aren't alone in that!

Can't answer to the rest of it, but there seem to be a lot of folks here who've had recurrences and repeat treatments, and come through all right, so it must be doable somehow ... and they'll likely be along to offer reassurance and more substantive answers.


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: Update [Re: Vicky1] #198178
04-24-2019 03:02 AM
04-24-2019 03:02 AM
Joined: Jun 2007
Posts: 10,502
PA
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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: 10,502
PA
Thanks for posting your fathers update, Vicky! Im so very sorry reading everything he has been thru!!! Im sure this has been very hard on everyone.

It sounds like he has been thru one thing after another for your father. After going thru so much its often difficult for patients and caregivers to stop waiting for the other shoe to drop. Just hearing the dreaded "you have cancer", is traumatic to most of us.

As far as whats next IF your father has a recurrence... it would be treated with either surgery and/or in some cases rads. Patients who have already had rads can and do go thru rads again. Some OC patients with recurrences or mets to other areas (especially the lungs) may be candidates for the newer immunotherapy drugs Opdivo or Keytruda. That type of chemo works for some but not others, its made to work with someones unique immune system which gets very complicated. After going thru surgery and/or rads to eliminate the OC, patients get followed by their doctors for 5 years with scans and thorough exams to watch for any irregularities. This is done after waiting for 3 months after rads or surgery to hopefully avoid getting a false positive which unfortunately can and does happen. The scans light up red for inflammation and infections just like they do for cancer. One important thing about being followed for 5 years... IF the cancer returns it usually is found very early making it much easier to treat. Just remember... IF is the biggest 2 letter word, it does NOT necessarily mean your father will have another cancer diagnosis, fortunately most do NOT!!! Every single person here regardless if they're a patient or a caregiver has the same recurrence fears. For many, therapy and/or meds help to get past this fear and of course time heals all wounds. About all any of us can do to move past the constant fear of recurrence is to focus on the positive, making the most of every day. It helps to know we are not alone in this, we're all in this together and when we are feeling low, its perfectly ok and understandable to lean on others. Thats one of the very best things about OCF, the lifelong friendships and strong bonds formed over some of the most horrific experiences.

Please dont be a stranger! We're here for you as well as your father and family. Best wishes with your fathers continued recovery!!!



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: Update [Re: ChristineB] #200356
08-14-2020 03:09 PM
08-14-2020 03:09 PM
Joined: Mar 2018
Posts: 72
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 72
Maine
Hi everyone!

Just popping in to give an update. We had our first scan in a long while on the 6th of August. Coronavirus kept us home for a long while! Scans all looked good. Nothing in his lungs. Bone graft looks good, blood vessels look good. Nothing concerning. So glad! Hope you're all doing well.

Last edited by Vicky1; 08-14-2020 03:14 PM.

Dad was 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!
8.6.20 Clear CT!
Re: Update [Re: Vicky1] #200358
08-17-2020 07:15 AM
08-17-2020 07:15 AM
Joined: Jun 2007
Posts: 10,502
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: 10,502
PA
Thanks for updating!!! Great news, congrats!!! Hope everything continues to show the all clear for your father. Wishing your both you and your father continued good health. Best wishes for continued healing, improvements with long term issues, and clear scans.


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: Update [Re: ChristineB] #200617
01-02-2021 04:48 PM
01-02-2021 04:48 PM
Joined: Mar 2018
Posts: 72
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 72
Maine
Hi all!

Another update! Met with the doctor again at the beginning of December. Still nothing concerning. Have another CT scheduled for April 2021. Dad's had to stay home during the pandemic, but we've all managed to stay safe and healthy. I hope everyone is doing well.

Dad's glad he gets to wear his mask everywhere. He struggles with his appearance some days. But, otherwise, we're feeling blessed!

Last edited by Vicky1; 01-02-2021 04:49 PM.

Dad was 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!
8.6.20 Clear CT!

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