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| Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | 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 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) 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=9sI 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 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | 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) | 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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