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#199905 03-06-2020 06:35 PM
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ConnieT Offline OP
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He went to have an MRI today. The tumor which they cannot be sure is cancer 100% but are pretty sure it is, is wrapped around the carotid artery making it too dangerous to operate. He is going to Mayo on Monday for a second opinion. They have discussed immunotherapy, some kind of knife treatment that can pinpoint an area precisely for treatment. He might qualify for a study on the east coast through Mayo.

He is glad there are some options but really wanted surgery to just remove the tumor.

just an update.


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
ConnieT #199906 03-06-2020 08:30 PM
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Connie, I am so sorry to hear this. I’ve been following your posts and was really hoping you’d get some good news. Sending good thoughts your way.

ConnieT #199909 03-07-2020 06:58 AM
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Connie, that’s too bad. Could the doctors be talking about cyber knife? I think a few people on this forum have had it. If you do a search, I’m sure you’ll find the posts. I believe one of the members who had cyber knife treatment is PaulB.


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.
ConnieT #199910 03-07-2020 07:40 AM
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Oh NO!!!!! I was afraid of something like this. Im so very sorry!!!!

Im sending you a PM.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #199912 03-07-2020 09:22 AM
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ConnieT Offline OP
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thanks all for the replies! I knew I stuck around here for a reason.

thank you for clarifying the treatment type. yesterday was a blur.


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
ConnieT #199917 03-09-2020 05:59 AM
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Posts: 3,267
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Connie,

I’m sorry to hear of your troubles! I’ve had a cancerous tumor wrapped around my left carotid artery about 5 years ago! They found it as they were doing a neck dissection, cleaned up what they could, and closed the surgical site. They sent me off to their sister hospital in manhattan where they did testing to see if I could survive with one artery, and passed their extentsive testing. About 7 days later I had a neck dissection again, and removal of my carotid artery where the tumor was wrapped around. It has to be wrapped around, I believe, more than 80%. The surgery was successful, but due to the tumor size or biopsy of surrounding tissue, chemo and radiation was recommended. I did Proton Radiation, and Chemo for 5 weeks! The radiation was at the Proton center in NJ where I had to hire someone to drive me each day, and went to my oncologist in Staten Island for chemo! I’ve been cancer free for a year now!

I’ve never had cyberknife. I’ve had IMRT twice , which most of us had, and then IORT twice which is done during surgery, and then finally Proton Radiation, which is the best!

Last edited by PaulB; 03-09-2020 06:04 AM.

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






PaulB #199918 03-09-2020 11:52 AM
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ConnieT Offline OP
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I am going to start a new post but thought I would respond on this one first.

What you mentioned sounds like what they plan on doing after they see how much radiation he has had. he is having a CT guided biopsy in the morning. Then the amount of radiation determines if he does the 5 days or 6 weeks of radiation I believe.

They believe his response to chemo and radiation was so good the first time that this area was probably missed due to it's location and I will say that area was lit up even at his first PET scan and they didn't know if it was cancer or inflammation.

They are also looking at using Keytruda or Opitvo (sp?) for the immunotherapy.

This doc says she has only lost 1 patient who had this similar situation and expects a 80-90% success rate. He would get treatments for immunotherapy an hour away but I believe the radiation would be 5 days or 6 weeks at Mayo since we are 4 hours south.

thanks for telling your story Paul as we had not been told about possibly surgery being a option.

He is so happy with Mayo because they are much more positive than University of Iowa has been.


Last edited by ConnieT; 03-09-2020 11:53 AM.

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

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