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"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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So you wont know for sure till next week. It's going to be hard until they come up with a firm diagnosis and some sort of plan. I'm thinking of you and crossing my fingers that it's not a recurrence and if it is, there is a treatment plan. I hope you can cram the next few days with good books, movies, walks, bike rides or whatever leisure/work activities you enjoy.

Vent your feelings here!



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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These days they are coming up with a lot of different new meds. Like our MO who is in charge of drug development at our hospital says, "there is always something (i.e. New med to try)." Things will become clearer once you have had the imaging and the biopsy. Right now, I am sure even the doctors don't know exactly what they are dealing with. Take Alpaca's very good advice for the next few days. I will be wishing for the very very best for you.


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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"OCF Canuck"
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Hey GM... how is your hubby doing? hugs.


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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I hope you get some great news after they do this CT scan. Get right back on that bicycle!


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
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Posts: 458
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Got "The Phone Call" this morning from my local ENT, the cancer surgeon I"m seeing on Thursday called him with the results. (they used to work together so sort of buddy buddy)

Preminary is the biopsy confirmed it is a tumour. PET/CT confirms, also that it has metastisized to the lungs amoung other placees. Basically suggesting palliive chemotherapy, won't cure but may slow down. What's there is beyond any 'curing' at this point.

Luckily my mom has been in town, wife insisted she come up after we sort of had an idea what was going on. Having a lot of family talks, etc. I don't have it in my anymore to be the "caancer warrior", just want to get affairs in order, get decent hopefullly pain free quaity of life for remaining time, get my head right for the next journey.

And so it goes


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Bob, not the news any of us wants to hear. If there's anything I may be able to help you with, just ask.


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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Bob, I'm sorry that you didn't get the news you were hoping for. Your post reminded me of the time when the doctor told us about John's lung metastases and how devastated I felt. That was one and a half years ago. Since then, I have learned not to see it as a "fight" against cancer as it is in no way an equal fight. It is something that I have learned to live with and take a step at a time. I don't look at the "big picture," I fix my eyes on the next step I have to take, and then the next, and the next. John has found seeing a therapist helps too.

I don't know if all this will help give you some comfort or help you to see a way forward. It is tough and I know that different people have different ways of coping with it. I just hope to share my experience with you.

All the very best, my friend.


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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So sorry to hear about the mets to the lungs. I was at that same fork but for me I went down the other path. The cancer may never be killed off but it certainly might be controlled to where you maintain a pretty good quality of living. Hopefully, you will seek treatment to try to manage it. Take care


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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"OCF Down Under, Kiwi"
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I am so sorry that you got bad news. And yes, the cancer warrior view can just add another layer of stress onto the patient. There is a time for that view but sometimes acceptance is healthier.

I really like the advice Gloria has given you based on her experience with her husband. One step at a time.

Great that your family has got together and you're sort of in this together. We are all behind you too. You sound like a terrific guy and if I was a praying type person I'd be praying hard out for you now!


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: Mar 2014
Posts: 110
Senior Member (100+ posts)
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Joined: Mar 2014
Posts: 110
I am so sorry to hear this, JAH. I know how devastating that phone call is and I understand how you feel completely. Reading your signature, you are have been a warrior and are still - dealing with this on your terms takes so much strength and warrior spirit, too.

I wish none of us had to ever get these calls or make these decisions. I know all of this sounds so trite -- it really does -- but my heartfelt best thoughts to you and yours!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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