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A thank you note. #197678
12-08-2018 04:10 PM
12-08-2018 04:10 PM
Joined: Dec 2018
Posts: 1
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bking Offline OP
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bking  Offline OP
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Joined: Dec 2018
Posts: 1
Five years ago I searched this forum for stories that could help me make sense of my situation. It helped me through some of my darkest hours. By way of introduction and in an effort to give back, I wanted to share a part of my story. It was published in a local paper back in May and I'm hoping that it might lend a bit of warmth and optimism to some of you here.

https://www.eastbayexpress.com/oakland/the-killer-inside-me/Content?oid=16276540

Re: A thank you note. [Re: bking] #197679
12-08-2018 08:46 PM
12-08-2018 08:46 PM
Joined: Aug 2018
Posts: 219
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ConnieT Offline
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ConnieT  Offline
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Joined: Aug 2018
Posts: 219
great article. so much the same as my husband's journey which is only 9 weeks out from radiation. thanks for writing it out for others to read.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: A thank you note. [Re: bking] #197680
12-08-2018 09:07 PM
12-08-2018 09:07 PM
Joined: Jun 2013
Posts: 312
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 312
alabama
Very good story. You captured it well, the feeling of always being scared to turn around and see what's attacking you next.


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: A thank you note. [Re: bking] #197682
12-10-2018 10:23 PM
12-10-2018 10:23 PM
Joined: Sep 2018
Posts: 63
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VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 63
Thank you so much for sharing. I do love that you advocate for the vaccine for HPV for the next generation to prevent others from having to go through HPV related cancers. It's so important because from what I've seen in my experience of having pre-teen and teen boys, it's more of an afterthought than an actively advocated vaccine.

I do hope your cancer never returns and that you are able to go on to fulfil your dreams for your future and thank you again for sharing your very raw and personal story.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: A thank you note. [Re: bking] #197685
12-12-2018 01:26 AM
12-12-2018 01:26 AM
Joined: Oct 2017
Posts: 14
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Michael Young Offline
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Michael Young  Offline
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Joined: Oct 2017
Posts: 14
Thanks for sharing. I am going to have my dental X-ray soon, Osteoradionecrosis is really scary


T4aN2cM0 left tongue SCC 10/2017
Moderately differentiated SCC
glossectomy, en bloc neck dissection and reconstruction 11/2017
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/2018
PET - no evidence of disease 05/2018
CT - no evidence of disease 10/2018

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