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#186734 11-20-2014 11:37 AM
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Hello fellow caregivers and survivors,

I've been off the radar for a while, but in long enough to read about and take advantage of the University of Maryland journaling/sharing opportunity. By the way, the writing helped me tremendously in being aware of my feelings before and after I wrote. Kudos to the people involved in that project!

So, the squamous cells made an appearance on my husban's neck just nine months after the surgery that removed part of the right and bottom side of the tongue.

A neck dissection that was performed on October 13. Only one lymph node out of 14 was compromised. The surgery took nearly four hours, but the doctor took a biopsy of the tongue that looked risky, checked the area thoroughly incuding the voice box and found nothing bad.

We came home the same day. There was a draing tube for a week, followed by the doctor's suggestion to see an oncologist. In the doctor's opinion, no radiation was necessary because the lymp node looked contained with no ramifications to other sites but radiation is not his expertise. Dr. said it was my husband's decision to take radiation or not, but the oncologist could give a more educated recommendation.

With the doctor's comments of 'you probably don't need it' we visited the oncologist who had a completely different idea. She saw potential risks that would take chemo and radiation if my husband decided not to act now. Radiation is in the near future, and the ball started rolling. My husband is anxious.

Monday, there's a CT scan on the schedule, and then they'll tell us when my husband needs to see the dentist, and so on and so forth. Lots of hurry up and wait.

My approach is to follow my husband's lead in what he needs. I realize many times what he needs is to be alone, and I tend to be annoyingly 'helpful'.

I would welcome your input.








Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment

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PattyElle

Stick with the Oncologist and start the Radiation. If Chemo is offered also then do both. After all my mother has been through I wish she would have done both from the beginning. Be strong and battle the beast with everything you have. You can win.

Good luck
Heidi

Last edited by sweetpe1; 11-20-2014 07:54 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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When I was diagnosed and had discussions on treatment options, the consensus was to hit it all guns blazing. I had induction chemo and the full chemoradiation treatments.

My belief was consistent to do everything possible to nuc the bastard as hard as humanly possible. I did NEVER want to look back and think what if. We did everything possible to obliterate it from my body.

If I were facing a similar situation now, my core beliefs remain steady. Do all you can to kill the bastard short of killing me! Let's get it on! Do or die, no other options. But this is a warrior talking so adjust to your own taste.

I hope you find the path that is as clear today as it is when you look back.

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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I let John do the choosing. It is, after all, his body. But I let him know that I will back him up irrespective. He may make a decision that I don't quite agree with, but he is the one who has to deal with the consequences, not me.


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.
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Good luck on the treatment and look up what some of the issues rads patients have here... there are some pretty detailed descriptions of the stages you go through during rads and the needs and how to cope with them. Don't push him but when he encounters an issue, tell him this might help, and if he agrees give him what he needs. Hugs and good luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thank you all for your comments.

Last year, neither of the three doctors we visited recommended radiation or chemo. The scc was stage one and the surgery was successful with clear margins that lead everybody to believe no other treatment was necessary other than doctor's visits every six weeks. Nobody said the word oncologist.

This year, after the neck dissection, there was a recommendation to see the oncologist. After that, my husband wanted to make the decision without my input and I agreed. He chose radiation, and I'm glad.

Perhaps I'm fooling myself, but I trust and feel comfortable with the doctors.
It would be aggressive of me to ask for treatments they have not yet suggested especially if I'm not the one taking them.

I'm taping all doctors conversations and they know it.

Thanks again!!!


Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment

Joined: Dec 2003
Posts: 2,606
Likes: 2
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I'm curious why you are taping all the conversations.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2013
Posts: 29
Contributing Member (25+ posts)
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Uptown, sometimes two sets of ears are not enough.

My husband had a list of questions for the doctor that she had already addressed in one of the taped conversations. He actually didn't hear much due to his anxiety and the way the soft spoken doctor spoke. He's also somewhat deaf, so I put the earphones on my phone and let him hear it while I went to the gym.

Thanks for asking,
Patty



Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment

Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Pretty innovative.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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