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Joined: Jan 2015
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Mysonny Offline OP
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Hi everyone! So, after weeks of waiting and almost 2 months from the diagnosis of my boyfriends recurring oral cancer, we check into Moffitt tomorrow morning at 5:15 a.m.. So many emotions are being felt at the moment - nervous, scared,excited to finally start a new journey to get my boyfriend back to the healthy and happy person I fell in love with. I know life will not be back to the old normal, and there will be a lot of things to get used to. I just feel happy to finally be able to see progress to get rid of this horrible thing we call cancer.

On Monday we had our consult with his surgical team. Impressive does not even start to describe how amazing they are. I have no doubt he is in the best hands and by skilled and very caring people. I know they will give. Him the best chances to beat this and thrive as much as possible

Again this forum and everyone that has given a kind word or advise has been beyond helpful and I know our journey will be made easier with this support.

Danielle


Loving Caregiver for my boyfriend

3/14 SCC L tongue, partial glossectomy L tongue, rads L nodes
12/14 Recur Stage III
2/15 Front of tongue glossectomy, ND w/ free flap
4/15 begin 8 wks rads/3x chemo
4/20/15 Steve passed away
Joined: Feb 2015
Posts: 14
"OCF Canuck"
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Wish you all the best! Was newbie "on" here a long time ago and now back with recurrence myself...was not my intention !!!....BUT...so happy to have all the support gang on side....All the best Danielle!....JL


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Thinking of you both Danielle.
Please let us know how it all goes..
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2014
Posts: 286
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Posts: 286
Hope it all goes well.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jan 2013
Posts: 1,291
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What a great post! Waiting is over and looking ahead to getting the beast put away for good. You've done great to stay focused and knew where to find knowledge and comfort and where to stay away from. Good luck and stay close, the journey is pretty bumpy and we'll likely have some ideas to help.

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
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"OCF Down Under, Kiwi"
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Thinking of you and your boyfriend, Danielle. Hope all goes well and that we hear from you soon.



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.
Joined: Sep 2014
Posts: 87
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I hope that the surgery went well and the healing is progressing nicely. Let us know how you're doing.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Jan 2015
Posts: 20
Mysonny Offline OP
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Posts: 20
Hi all - Steve had his surgery last Thursday. We checked into Moffitt at 5:15 am and they took him back for surgery around 7;15. The surgery lasted 10 hrs. They expected it to be more like 8 but it took 3 cuts to get clear margins.

Unfortunatly, that also meant they had to take more of the tongue then expected. They could not save the whole front tongue. So basically molars forward. I did not ask exectly what % that is, but I atleased 50% maybe more.

They also took nodes from both sides of the neck - wrist flap was performed and tissue from his inside thigh was removed to repairs the write area.

His Dr's were very happy with how everything went. The nodes to them "look" healthy but we will need to see what the pathology report says.

I have been taking turns with his mom on staying with him. Exhaustion does not even describe how I feel at times. You really cannot get any good sleep in the hospital no matter how great the nurses are and private the room is. I even got pulled on driving to the hospital on Saturday to releive his mom because the officer thought I was drunk - nope - just that tired. She was nice when I explained and just warned me to wake up some and try to get some rest.

Unfortunatlly, all of my scares of his attitude and feelings around the surgery came true. He is very depressed. He is mad and feels he will never talk again. His Dr's say he will but with time and therapy. He will be able to be understandable and go back to work - we just do not know the degree of clarity. I look at this as positive - I think I could have lost him - we could have been told a much bleaker outcome,and I am thanking god I still have him but he does not have this view.

Therapists have been to see him - he does not talk to them a lot. They have him on anti-depressents and anti-anxiety meds. He gets very anxious when walking and starts shaking violently - they said it is from being scared he cannot breath due to the trach. Today they wanted to remove his trache for a smaller step down one and do a procedure to move his feeding tub from his nose to his stomach - they beleive he will have this for 2 months or so. He refused both procedures the minute he found out they involve needles or another surgery. Dr's tried to talk him into it, but from what I understand nothing they said helped. I am at a lose on what to do and so is his mom. We both just keep hopeing something will motivate him to be pulled out of this funk.

I do not know if any of you had these feelings or if you have any advice. I/him mom and Dr's all were prepared for this to be his reaction. But I know it will take him to really want to get better and move forward with treatment for this to be a sucsess. Thank you again - Danielle


Loving Caregiver for my boyfriend

3/14 SCC L tongue, partial glossectomy L tongue, rads L nodes
12/14 Recur Stage III
2/15 Front of tongue glossectomy, ND w/ free flap
4/15 begin 8 wks rads/3x chemo
4/20/15 Steve passed away
Joined: Oct 2014
Posts: 41
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Posts: 41
Hi Danielle,

I haven't replied to any of your posts thus far but have been reading them. My dad had a hemiglossectomy in November for a BOT cancer. This was a recurrence after radiation so recovering has been slow. His cancer is advanced so it's very different in that sense. I can however share that it took more than one procedure to get clear margins and I know all about the panic due to the Trache. Everyone on here that helped me get through this shared their experiences and the trache is absolutely the worst part. As a result, my father sleeps sitting down or propped up with a light on. His trache was in for about two and a half weeks due to a second surgery but was quickly removed thereafter. It was nice to be able to hear my dads voice. It was certainly difficult to understand but still an improvement. I think once your boyfriend gets his trache removed his mood will perk up. To this day my dad still has an NG tube. He refuses to get the PEG. I think what your boyfriend is experiencing is normal and almost expected. It's hard a caregiver to see someone you love but we have to be supportive and respect their decisions. With time hopefully he will get better. There is nothing wrong with him being on anxiety meds and anti depressants. My dad still takes anxiety medication every so often. I think with time your boyfriend will be eating and talking and back to a new normal soon enough. Make sure you take the time to take care of yourself. I have been so preoccupied with my fathers care that I neglect to take care of myself. Take help from others when necessary so that you can rest and eat. Prayers to you and your boyfriend!

Last edited by ConcernedDaughter; 02-23-2015 05:10 PM.

Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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Hi, Danielle. So glad that the doctors are positive about your boyfriend's prospects. By my reckoning he is only up to Day 6 or so after a very long surgery. I've had two similar surgeries. On both occasions I was in a pretty terrible state of mind for the first 8 days. One of my surgeons told me that Day 8 is the first day to expect a real improvement. Surely the NG tube to peg transition can wait a bit and then he only has the trache to worry about. If you can talk him into having that changed, he will find life much easier.

You can tell him that on Day 6 or 7 of my first tongue op I hallucinated during the night, thought the hospital was under attack, pulled out my NG tube and whatever I was attached to and ran out of the hospital down some fire escape stairs. I had the trache in! Once I was out in the cool night air I realised that I had probably been mistaken and found my way back to the ward. Don't know how I did it because even now I get lost going from one building to another. I thought I had gone out of my mind and insisted on seeing a psychiatrist. Because I couldn't talk it was all very difficult but after that the rate of improvement was speedy. I didn't really cheer up until I left the hospital though.

If the hospital could put you in contact with another youngish man who has gone through the same thing, that might help. For all the love you and his mum are giving him, you can't show him what it looks like a year or so down the track.

I feel for you all. It's a horrible cancer and it's awful being "medicalised" and jabbed and anesthetized and cut. But if the cancer is removed, the body recovers and so does the mind in time.

Best wishes
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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