| | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP  "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Thanks Wendy, I'm grateful to have them, too. Thanks so much for your wonderful advice, and congratulations on Steve's good result.
Simon's is being treated in Perth but I am on the NSW Central Coast, so as soon as I receive advice I get on the phone or email him as soon as possible. I am strongly encouraging him to join himself, but at the moment he is comfortable with me relaying info.
Kind regards to you and Steve. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | You know Karen, after reading your post I think even more strongly that she was just trying to give him a bit of a giddyup.
I don't whether its the doctor's lack of empathy, self-preservation or what but my brother calls his MO Dr Death, NOT because he is a cancer doctor but because he's such a grim fellow!!
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | 100lbs !!! Is that about 45 kilos? I hope all is going well for you now. What does ORN (in your signature) stand for, Angelia? I've looked up the abbreviations but can't find a mention it.
Regards, Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Thanks Don, I've had a quick glance through the journal article link you send me - it's spot on. It's great to see all your good scan results in your signature. Regards, Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | 20 lb. (or so) weight loss is a minor level of concern and fairly typical. I lost 1/3 of my body weight - 61 lbs, they weren't happy about it but carried on anyway and completed my Tx. The mask was quite loose by that time. They did take weekly X-rays to insure registration accuracy. I have to agree with previous posts that the worst case is they have to reprogram the treatment plan - but that's unlikely. I have no idea what they were radiating as the mid Tx scan showed the tumor as completely gone.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | ORN is osteoradionecrosis which is when the jaw bone deteriorates as a after effect from radiation treatments.
ChristineSCC 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  | | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | What Christine says is 100% true.
ORN is a relatively rare complication. The way it happens, in laymen's terms, is that the radiation damages or destroys the capillaries in the jawbone, hence blood and/or antibodies (or antibiotics for that matter, which are delivered by the blood) cannot access areas of infection so bacteria causes the jawbone to disintegrate.
This condition can be controlled or mitigated by Hyperbaric Oxygen Therapy (HBO). It can regenerate the capillaries and the body can control the infection.
This is the reason that scrupulous, post Tx, dental care and hygiene are mandatory. The lower mandible is particularly at risk. Any extractions, particularly teeth in the irradiated field must be done with extreme caution and preferably by a dental oncologist, in consult with your medical team.
Root canals and filings are not a problem.
Last edited by Gary; 11-05-2011 08:08 PM.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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