#86803 12-28-2008 08:27 AM | Joined: Jul 2008 Posts: 21 Member | OP  Member
Joined: Jul 2008 Posts: 21 | It has been a while since I posted, but, other than chronic recurring infections, there hasn't been much news until now.
Chris's Plastic Surgeon did a scan, but only of the bone to make sure that there wasn't any infection there. That came back OK.
His Head and Neck surgeon has a full scan scheduled for Jan. 2, 2009. She wants Chris to start Hyperberic Oxygen treatments, but has to make sure there isn't any cancer lurking around first. He has not truly healed. The infections keep coming back and he has been on antibiotics more than he has been off them in the past five months.
He recently tried to "tough one out", hoping that it was just a bad case of swelling and not an infection, but after a week of extreme pain, and not being able to sleep more than 2 hours at a time, he told me Friday when I got home from work to plan to take him to the Emergency Room in the morning. We have been thru this so many times, that I just got on the phone to the Surgeon's office and told them what the situation was and that if they didn't want to call in an RX for antibiotics, then we would see the doc in E.R. on Saturday. His RN not only called it in but also gave us 2 refills and told us that the doc wanted to keep him on antibiotics until the next surgery.
This surgeon had not yet been informed of the HBO treatements that the other surgeon is planning to do. Hopefully, after those, the antibiotics will not be needed routinley.
He will still need another Free Flap surgery, but that won't be for at least 3 more months.
I have been reading a lot about other people's treatment issues, and have found that I am turning into a reverse Internet Hypochondriac. I read issues that other people are having and think - Chris has that too..... maybe I can give some advise, but then I find myself replying and just listing all of his problems and no help or solutions or advise for the poster. So, I am using this quick update to get that out of my system.
This New Year will bring more challanges, but when I look back on what we made it through in 2008, I know we will be able to face 2009 -- one day at a time, one problem at a time.
Happy 2009 to everyone.
Karen
CG-Husb-Diag 03/08 T4N2cM0 Floor of Mouth SCC: 5/21-Mod Rad neck dissecton, remove mandible,floor of mouth, suprahyoid muscile, part of tongue. Bilateral +nodes. Reconstruct w/fibular (failed). 5/25-Pec flap: 6/15-infection from fistual: 7/31-Rads-6 wks. Chronic infections. HBO
starts 1-26-09
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Happy 2009 Karen and Chris. 2008 was certainly a rough one for you and I hope that your next post is full of good news. Be strong and stay positive.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Karen
Thank you for letting us know how you and both going.
The toll it takes on us mentally and physically is life changing. I know waiting on appointments seems to take forever, but as you said - look at how far Chris and you have come. Exactly what some friends said to me the other night.
Like you, I take things one step at a time - we WILL get there.
Take care
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Thanks for posting. Although you may not feel that you have alot of advice to offer right now, the day will come when you will be the "go to" person on a particular subject. In the meantime, we are here for you - and will wait with you to hear the results of the Jan 2nd scan. We pray for the all clear and the HBO treatments to help the infections.
In the meantime - Happy New Year to you both.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jul 2008 Posts: 21 Member | | OP Member
Joined: Jul 2008 Posts: 21 | The scan came back all clear. Chris is set to go for his HBO treatements. We are just waiting on the scheduling and so very grateful to have this option.
We got some really bad news today about a friend with a brain tumor, and when Chris read the email, he said "that makes me feel lucky".
Sometimes it is hard to put everything in perspective, but I think he is starting to do that.
Karen
CG-Husb-Diag 03/08 T4N2cM0 Floor of Mouth SCC: 5/21-Mod Rad neck dissecton, remove mandible,floor of mouth, suprahyoid muscile, part of tongue. Bilateral +nodes. Reconstruct w/fibular (failed). 5/25-Pec flap: 6/15-infection from fistual: 7/31-Rads-6 wks. Chronic infections. HBO
starts 1-26-09
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Good news for Chris and wonderful that you have the HBO treatments to look forward to. Wishing you a much better 2009.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Karen You wrote: "I have been reading a lot about other people's treatment issues, and have found that I am turning into a reverse Internet Hypochondriac. I read issues that other people are having and think - Chris has that too..... maybe I can give some advise," What a clever turn of phrase. I think it's contagious because I seem to have caught it too -  Seriously: good luck to you and Chris. good riddance to 2008 and better health in 2009
Last edited by Charm2017; 01-10-2009 06:05 PM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 |
Karen:
Ive done HBO and cant say enough good things about it. After a few dives, Chris will start to feel better. After 2 weeks he will feel so much better, you both will be amazed. Hope he gets to begin them soon so the healing can begin.
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  | | |
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