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GG87 #196933 08-16-2018 07:23 PM
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Vicky1 Offline OP
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Treatment 20 today! 10 more to go!! The end is in sight! Dad is in pretty good spirits. Tongue is a little swollen today. Face looks like its about to start to peel a bit. We got him some Miaderm which he has been using since before the radiation started, and it seems to have made a difference in the severity of the burn as most people say he looks great for being at this point in his treatment. Met with a different nurse yesterday who seemed more concerned about Dad's choice to not continue the chemo. She wanted to know if he was going to continue the chemo after the radiation is over. I don't know why the radiation oncologist and radiation oncology nurse would have told him it was overkill, if EVERYONE else says its not.

Last edited by Vicky1; 08-16-2018 07:27 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!
Vicky1 #196955 08-18-2018 05:39 PM
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Hi Vicky. I was struggling with the last few radiation treatments, and was hoping to avoid the last chemo, as it was for a partial week of my last rads.
I discussed with both Oncologists.
What it boiled down to me, was a matter of statistics. These treatments were developed to work at the specified protocols. It doesn't mean that they can't succeed with one less of one or the other. But each "miss" just lessens the percentage of success. I figured, after putting up with so much, even months before the rads/chemo, why even take a chance of lessening the odds, even by a fraction?
So I pushed through to the end. And needed extra hydration and a Fentanyl patch among all the other things discussed on the forum.
Not saying every situation is the same, I didn't have much tongue swelling, and didn't have the same surgeries others had.
But my point is, I wouldn't think the completing the original protocol would be overkill.
It's a risk /reward of what that patient can complete. But I think it's probably best to try to keep Dad positive, and focus on one day at a time. All things will pass, I can't believe I'm over 2 months post treatment. You and your Dad will be there in a few months also.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Vicky1 #196957 08-19-2018 04:36 AM
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Sometimes people who mean well speak out of turn. Your fathers doctors have many many more years of education behind their medical degrees than a nurse. One well meaning nurse who probably doesnt follow patients for years like the medical oncologist does shouldnt be making treatment plan comments at all. They are commenting on something that is NOT even their specialty! The doctors created the treatment plan are going by many years of medical research on many patients. They have flow charts with every imaginable situation listed. If you want to see it, ask the docs about it. I used to know how to find it but off the top of my head I just cant remember anymore. Its been years since Ive taken a look at it. In the end, the choice is the patients who is swayed by not feeling their best right now. In my (unprofessional) opinion patients should try their best to stick to the original treatment plan as much as possible. Your father does NOT want to risk a recurrence and have to endure anything else after this is completed, its just not worth it.


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
ChristineB #196978 08-20-2018 06:54 PM
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Vicky1 Offline OP
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Went to see his surgeon in Boston today. He said Dad was looking great. He said he thought not doing the rest of the chemo was fine, too. He said it only increases the success rate by like 2% in cases such as dad's, where the lymph nodes were clear and the margins were clear. He encouraged Dad to get the fentaynl patch to get through the next few weeks. I offered to take time off from work to help him get to his treatments. Mom called her work and got some sass from her supervisor about continuing her leave (because she heard my dad was well enough to go to a car show, and thought that should mean he should be well enough for my Mom to return to work. SO frustrating.) Things are looking alright, as long as Dad can manage his pain! Everyone keep fingers, toes and eyes crossed for us!


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!
Vicky1 #196984 08-21-2018 05:50 AM
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Vicky, how I hate hearing anyone has to struggle with other things when going thru cancer themselves or for their spouse!!! My former employer was very strict about this sort of thing and at times I had to fight to be able to take time off to get treates and recover. What was the most upsetting was the third time my cancer was diagnosed and my doc told me to get my affairs in order my employer was NOT very happy with me as I had recently returned from my previous cancer recovery.

Make sure your mother understands how FMLA works. She is legally entitled to have up to 12 weeks off to care for herself or an immediate family members serious medical condition... which cancer definitely falls under! As long as she has worked there for over 12 months, has worked at least 1250 hours in the previous 12 months and theres 50 or more employees where she works are the biggest hurdles to get over to qualify for FMLA. This FMLA time off could be intermittent or continuous, whatever works best for the patient, spouse or caregivers situation. Theres a few other minor details in qualifying for FMLA so Ive included a link to get full details.

FMLA basics from US Dept of Labor


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
Vicky1 #197067 08-31-2018 06:11 PM
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Vicky1 Offline OP
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Today was dad's last day of treatment!


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!
Vicky1 #197068 08-31-2018 06:12 PM
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Hooray!!!!


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
Vicky1 #197070 09-01-2018 02:46 PM
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Time to celebrate! I hope he feels better soon!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Vicky1 #197109 09-09-2018 03:16 PM
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Vicky1 Offline OP
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Hi all,

Just checking in again. He's still in lots of pain! He had an allergic reaction to something at the end of last week which caused his already blistered and sore lips and face to swell up. He just refuses to slow down and has been outside working on the cars, getting the plow truck ready for winter, mowing the lawn, etc. and probably got into something he shouldn't have. They did Benadryl for 24 hours and when they decided that wasn't doing the trick, put him on steroids. Seems to be a bit more comfortable now. He said even water hurts now, where as he had been able to drink water and eat soft foods throughout his treatment. They're going to check in with him on Monday, and he has a follow up with his radiation nurse practitioner next Thursday.

The radiation oncologist said it would probably be a few weeks before he turns the corner and starts noticing he's not feeling quite so bad. Anyone remember how long they took pain medications after ending 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!
Vicky1 #197111 09-09-2018 05:25 PM
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I would guess I kept using mine for about 3 or 4 months past finishing rads. Recovery can take a long time to rebuild patients bodies who have been thru so much. Unfortunately none of us are ever able to get well as fast as we think we should.

Its usually 2 - 3 weeks post rads when patients suddenly notice they actually feel almost like their former selves. But, recovery can be full of ups and downs with a few setbacks as well. As long as your father is able to push himself to take in at least 2500 calories and 48-64 oz of water daily he should be ok to slowly start getting back into his regular routine. We all need a reason to get up in the morning! Some patients need routine while others need to see their progress and others cant stand to sit still for more than they absolutely have to., Hopefully the work your father does is not too strenuous and does not involve being around alot of different people. Most patients have their resistance to colds, flu, germs, etc lowered for quite some time after finishing rads/chemo. It can take patients years until their body is fullhy recovered and their bloodwork goes back to their pre-cancer normal levels. Recovery is something nobody likes... especially the setbacks after thinking "hey everything has been pretty good" ! It just take more time than any of us like.

Keep up the higher caloric intake and water for at the very least the first post yr end of rads celebration.


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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