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#191832 02-22-2016 10:08 AM
Joined: Apr 2016
Posts: 75
Likes: 2
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2016
Posts: 75
Likes: 2
Hi I have not posted in a awhile but since December I have had a lesion that has not healed and I am now spending my winters in Florida. I was home for Christmas in Mass and my regular oncologist was not able to see me.
I met with ENT last week who said after radiation cancer presents itself in different ways. He was concerned about the lesion but did not want to biopsy it cause of healing complications after radiation, so he is sending me to Moffitt. Hopefully I can get in as soon as possible. I was able to see the tumor on the last two times in 2005 and 2009. Recently my whole body has been aching and my left arm feels like I pulled bones or muscles. I just don't feel right and am very scared that this is happening a third time and that I waited too long. Reading your post the doctor I had in Mass never told me about cancer looking different after radiation and that this can travel to brain, bones and other areas. I should have know better. If it wasn't for this forum I would never have know what this cancer can really do. Please help with advice here alone in Florida


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
#191835 02-22-2016 10:21 AM
Joined: Jul 2012
Posts: 3,267
Likes: 4
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
I'm sorry to here of your recent concerns, but glad to hear you'll be going to Moffitt, which is one if the top centers in the country, and on the NCCN and NCI approved listings. Several members here were patients there, and if needed, do see Dr. Louis B Harrison who is the Radiation Oncology Chair, and senior member there, and leader in head and neck cancer.

Best wishes, and hopefully it's nothing major, but are doing right to be checked.


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






#191837 02-22-2016 11:03 AM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Im so sorry you are still experiencing problems!!! After rads, many OC patients find themselves in similar situations with unhealing wounds. Radiation damage (even scatter rads) makes for compromised healing abilities with extended timeframes for tissue to rebuild itself.

You may need hyperbaric oxygen treatments (HBO). The wound should also be swabbed and tested to hopefully rule out any type of infection. If there is an infection, you would be given antibiotics. If that is unsuccessful the next step is stronger IV antibiotics. Ive been down that road after my mandibulectomy needing months of IV antibiotics and numerous HBO dives. After many months the wound finally healed and several years later I have not had any problems at all.

Wishing you all the very best!


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

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