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#197798 01-15-2019 03:49 PM
Joined: Aug 2018
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ConnieT Offline OP
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so last radiation treatment was Oct 4th. He is starting to eat many foods now but the issue is so much pain. This is the man who had little pain during treatment and after but here we are months later and he's dealing with a lot of pain. He would be eating pretty much anything except it's too painful. He wonders if its from taking healthy tissue for that biopsy on Dec 26th and it's not healing. Biopsy done on cancer tissue didn't bother him back in July.

Also, numb hands and feet. Doc said there's a med for that but it has side effects. B12 and B6 were mentioned but he wants shots and they didn't want him to do shots but supplements so he probably wouldn't follow through with that.

any thoughts or experience are appreciated.


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: Jul 2009
Posts: 1,406
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Joined: Jul 2009
Posts: 1,406
Connie, I'm sorry to read all this. I can't comment on the pain issue except to say that I had quite a lot of it during treatment and it continued for several months but eventually went away. Like others here I couldn't handle solid foods for at least 6 months after the end of rads.

I too have largely numb fingers and also tingling up my arms. However this didn't begin until several years after I finished treatment, and it has progressed. Finally a neurologist diagnosed Radiation Fibrosis Syndrome, an unfortunate side effect of having your life saved in this fashion. If your husband's symptoms continue or worsen you might consider a neuro consult - although I must add that not all of them are up on this diagnosis, which I gather is fairly recent. Mind you, I'm no doctor so this is just a guess!

There is a guy in New York who specializes in this condition however. His name is Michael Stubblefield and here's a link to get you started:

https://www.youtube.com/watch?v=cp5PGCUYRdE&t=9s

I hope your husband finds relief very soon.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Aug 2018
Posts: 345
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ConnieT Offline OP
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Joined: Aug 2018
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thank you David, I will check out the link.


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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
To chime in,

I was interested in Dr Stubblefields work in Rehab Medicine while he was at Memorial Sloan Kettering in NYC, but he has since moved to Kessler Institute in NJ, so I never went to see him, although it’s only a short distance, but I don’t drive anymore. There are You-Tube videos to watch, plus has a few books $$

I did see last year, a speaking engagement he had with the Explorers Club, which he belongs, I believe about visiting the North Pole, which I would have liked to have attended but the date had just passed.

FYI


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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