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| | Joined: Dec 2018 Posts: 10 Member | OP  Member
Joined: Dec 2018 Posts: 10 | 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 | | | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2018 Posts: 345 Likes: 8 | 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 58 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | 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
| | | | | Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2018 Posts: 71 Likes: 1 | 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
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bking | | | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2017 Posts: 36 Likes: 2 | Thanks for sharing. I am going to have my dental X-ray soon, Osteoradionecrosis is really scary
T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
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