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#148242 - 04/14/12 03:34 AM Final report on my necrosis issue
Dragan Offline
"OCF Canuck"
Platinum Member (300+ posts)

Registered: 07/02/06
Posts: 445
Loc: Regina Saskatchewan, Canada
I've been back from my last trip to the cancer centre in Calgary for a couple of weeks...it's taken me a while to summon the...I don't know...interest? motivation?...I'm struggling to find the right word.
In earlier posts, I outlined the issues I've had for the past two years with an area of necrosis in the side of my skull from radiotherapy. After all this time, I had high hopes that this latest trip would be the culmination of this latest "saga"...that the Doc's would have a date set for surgery, and we could get on with things.

"Hopes"...perhaps "pipe dreams" would be more appropriate. I'd had one last series of scans done in the past three months of a variety of flavors; CT, MRI, iCAT, x-ray, bone scans, etc. etc....you get the "picture". All intended to full quantify the extent of the necrosis and finalize a plan.

The intention was to remove the necrotic area, install an appliance in the void, repair the damage to my middle and inner ear from the bone spur, etc.

What the scans showed dashed my hopes. The area of necrotic bone is simply too large to address surgically. without complete absorption of the appliance edge fitting, it would simply be a disaster waiting to happen. One bump, any sort of trauma, even something as simple as biting something the wrong way could cause catastrophic failure with almost certain fatal consequences.

In short..the surgery is simply too dangerous to even consider. As an added bonus, the issue with my TMJ was also "quantified". My TMJ on the affected side is virtually destroyed by a combination of rads and arthritis. We've been discussing what to do with that problem as well; removal of the joint and placement of a feeding tube, fitting an artificial TMJ, or simply leaving it alone.

That choice has also been made; we have collectively been concentrating on the left side since that's where the cancer was, and all of the treatment occurred, all of the pain was centered, etc. We hadn't looked beyond that...we should have.

The scans showed that the problem with my jaw wasn't confined to the left side...the right TMJ is "problematic" as well. It hasn't really caused a great deal of pain...well, it probably has, but the pain meds I've been forced to take to deal with the necrosis and the left TMJ pain have masked the problem. The right TMJ is virtually fused due to arthritis as well, so I've gone from being a candidate to have an artificial joint implanted, to NOT being a candidate for anything.

They will not attempt a bilateral TMJ replacement due to the current catastrophic failure rate of artificial TMJ's. The only option open surgically is to remove both sides, reassemble everything for cosmetic purposes, put in a permanent PEG and call it good, or simply leave everything alone and treat it symptomatically.

To say I'm "discouraged" is a rather large understatement. "gutted", "appalled","devastated"...they would all work fairly well.

the pragmatic side of me says this is just another hurdle to be overcome or accomodated. The pragmatist in me says "at least it's not a recurrence"...the emotional side of me tore one of my Doctor's a new body opening when he made that same comment to me during our consultation. I am sick to death of hearing that...NO, it's not a recurrence...but the problems I'm having are a LOONG way from being inconsequential in comparison.

To be honest, I don't know what I'm going to do, or what options I have, if any. My cousin ( he's the oral surgeon in my life and has done numerous surgeries in the years since my diagnosis)forwarded all of my charts, scans and test results for the past 36 months to a former colleague who is now at the Mayo Clinic to get another opinion.

He heard back from him yesterday...they concur. There is currently nothing that can be done surgically that is safe and that will offer any meaningful improvement in the current situation.

So...that's it. For the forseeable future, anyway. As much as I detest the very IDEA of even one more pain pill, or anti-inflammatory, or steroid, or???...that's what I'll be doing...eating more pills.

Yee-friggin-haw.

_________________________
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06

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#148249 - 04/14/12 08:21 AM Re: Final report on my necrosis issue [Re: Dragan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9092
Loc: PA
Im so sorry to read your latest post! Im at a loss for words. The horrible after effects just never stop, do they? Hope you can find some relief for your pain. I will keep you in my prayers.

Wishing you all the best.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148253 - 04/14/12 08:44 AM Re: Final report on my necrosis issue [Re: ChristineB]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#148258 - 04/14/12 10:39 AM Re: Final report on my necrosis issue [Re: Gabe]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Dragan - I was so sorry to hear of the latest diagnosis in your treatment. I hope the pain management can bring some relief to you. I wish there was something I could say that could help. I guess I'm just a "never-give-up" kind of person, but I am still really hoping for some kind of magical turn-around for you or something yet undiscovered that could make everything better. Just know that you have people here who really care about what is happening to you.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148260 - 04/14/12 12:22 PM Re: Final report on my necrosis issue [Re: Anne-Marie]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Dragan,

Wish I could come up with an answer.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#148268 - 04/14/12 01:54 PM Re: Final report on my necrosis issue [Re: davidcpa]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Me too... I did hear Recently about a face transplant for a gunshot victim, I'm wondering if a dor scull... Or part of it is a possibility - I haven't yet seen my SO but I will print off your letter see what he says. I'm to see him Monday, my appointment was last week but he was called into an emergency surgery. Hugs... There's always hope.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148269 - 04/14/12 02:01 PM Re: Final report on my necrosis issue [Re: Cheryld]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 694
Loc: Media, PA
Oh, Wayne, I am so sorry that you are feeling so dejected. Like Cheryl, I am an eternal optimist. I had sent you a PM a week ago. The offer still stands. I wish there was more I could say to make you feel better. Remember, that you are NOT alone.
_________________________
Anita (62)
CG to husband, Clark, 72,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14

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#148270 - 04/14/12 05:05 PM Re: Final report on my necrosis issue [Re: AnitaFrances]
sallyanne Offline
Supporting Member (50+ posts)

Registered: 08/06/11
Posts: 78
Loc: New York, NY
There are no words. I am so sorry!
_________________________
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11

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#148274 - 04/14/12 07:33 PM Re: Final report on my necrosis issue [Re: Dragan]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi Dragan:
Sorry to read your latest news, but there just has to be something that can be done, and we'll find it if there is. Go to the Forum Search bar (top right) and type in EzJim, and send him a PM asking if he has any suggestions. He has recently had some jaw problems similar to what you are experiencing, but not as bad, and may be able to give you some ideas as to where/what to do, go, for evaluation. Please don't give up - and we'll all try to ask/check around to see what we can come up with. Know we are with you.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#148276 - 04/14/12 08:09 PM Re: Final report on my necrosis issue [Re: julieann]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi Dragan:
In re-reading some of the older posts, I see you are more familiar with EzJim and some of the older posters than I, so my suggestion wasn't very good. I will, however, keep searching, along with others, for anything that might be done to help you, and also ask my doctors. I'm going to Vanderbilt University Hospital, Nashville, TN. next week, for problems I am having, and will check out their facility for possibilities.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#148277 - 04/14/12 08:46 PM Re: Final report on my necrosis issue [Re: davidcpa]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Me too... I did hear Recently about a face transplant for a gunshot victim, I'm wondering if a dor scull... Or part of it is a possibility - I haven't yet seen my SO but I will print off your letter see what he says. I'm to see him Monday, my appointment was last week but he was called into an emergency surgery. Hugs... There's always hope.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148285 - 04/14/12 10:58 PM Re: Final report on my necrosis issue [Re: Cheryld]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Dear Wayne,
I'm so sorry to hear of your news. All I can say is that perhaps a third opinion is in order. I live in the Boston area and we have some of the best hospitals in the country here.

I can give you the information for my doctor, if he can't give you any advice, perhaps he can point you in the right direction.

Daniel G. Deschler, MD, FACS
Director, Head and Neck Surgical Oncology
Director, Normal Knight Center for Hyperbaric Medicine
Professor, Harvard Medical School

Massachusetts Eye and Ear Infirmary
243 Charles Street
11th Floor
Boston, MA 02114
617-573-4100

Best wishes,
Kerri

_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#148320 - 04/15/12 05:15 PM Re: Final report on my necrosis issue [Re: Kerri]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Dragan - I certainly agree with Kerri about another opinion. Especially at a hospital doing work or familiar with transplantation work with oral cancer victims. In just a short Google search, I saw that UMPC (Pittsburgh) even has a link that helps you decide if you are a candidate for transplantation surgery. Cheryl, your thought re transplant is such a good one! The ENT that my son had is a maxillofacial surgeon, very well thought of in our area and known for being very aggressive in his treatment. He would probably be able to give a third or fourth opinion. One of his special areas of interest is Osteonecrosis of the jaws. Here is information on him:

http://www.utmedicalcenter.org/doctor/194/eric-r-carlson-dmd-md/

Ohhh - I am SOOO hoping something good can happen!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148496 - 04/19/12 01:15 PM Re: Final report on my necrosis issue [Re: Anne-Marie]
Dragan Offline
"OCF Canuck"
Platinum Member (300+ posts)

Registered: 07/02/06
Posts: 445
Loc: Regina Saskatchewan, Canada
Sorry to be slow in posting again; still trying to get my head wrapped around everything.

I did speak with one of my surgeons re: cadaver bone as an option. It isn't for a variety of reasons, one of the biggest is that of medical ethics. That was an immediate "hot button" but after discussing it in depth, what he had to say does make perfect sense, and I agree with the position the medical community has in that regard.

That notwithstanding, the skull is much more "multi-dimensional" than virtually any other bone in the body. The measurement top to bottom/side-to-side is only one part of the equation; there are a lot of complex curves, material of varying thickness and density, etc. all of which can have an effect on intra-cranial pressures among other things.

He likened it to trying to reconstruct a fingerprint while it was still on a fingertip, without any scar tissue. It's simply not technically possible at this point.

We talked some more about the whole appliance issue as well. The area of necrotic bone is quite large...nearly 20% of the total surface area. Adding to that, the area of "corrupt" bone ( of questional integrity due to radiotherapy) adds as much as 10% more surface area. That, and the location... the top of my ear is almost the "epicenter" of the necrosis, is what makes it so challenging.

The jaw muscles exert a huge amount of tension on that part of the skull regardless of whether the jaw is active or not. Anchoring an appliance and keeping it in place when it is as large as this would need to be, and keeping it anchored for as long as it would take to heal properly is just...impossible.

Long and short...the technology just isn't there yet. He outlined the process they went through as a team to evaluate the feasability of moving forward with the surgery. As much as I'd like it to be otherwise, they were exhaustive in their attempts to come up with a viable plan that was safe enough.

He made an interesting comment today; he said that he did not doubt for a second that if I looked long enough, I would find a surgeon who would agree to do it. He encouraged me vigorously to seek additional opinions as well. He also suggested that if I did find a surgeon who agreed to do it, I should take a long, hard look at the motivations.

This is coming from a surgeon with absolutely nothing to prove. He is at the top of his game, and the top of his profession. His concern is that someone willing to do this surgery would be doing it for reasons that were not necessarily in MY best interests.

Anyway...it is what it is. I haven't thrown my hands in the air and said "I give up"...rather, I'm sort of at the point of saying "this is as good as it gets". Accommodation may be the only realistic option open to me at this point. That's not to say something might change, either in the condition my head is in, or the technology available to deal with it. I haven't made it through the last six years sitting on my hands waiting for someone to deliver good news, and I likely won't start now. Sometimes you have to make your own luck, and this is one of those times
_________________________
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06

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#148503 - 04/19/12 04:48 PM Re: Final report on my necrosis issue [Re: Dragan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9092
Loc: PA
Wayne, Im so sorry! Im sure this is overly disheartening and disturbing to learn there is a slim chance of repairing your damaged body.

I have heard of a skilled surgeon in Miami, Florida who has done some interesting work. He has done reconstructions when there was little hope. I will look for the threads and send it to you thru a PM. Maybe speaking to the person who underwent a major surgery could help you to see if it would be possible to get help from this doctor. I know you say "I give up", but you never know, this could be the help you need. I will email it to you when I find it.

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148505 - 04/19/12 04:56 PM Re: Final report on my necrosis issue [Re: Dragan]
ilyse Offline
Member

Registered: 04/17/12
Posts: 10
Loc: california
Dragon,

I can only imagine what you are going through. I see you are in Canada. I am in the LA area and got a second oppinion from a Dr. Blackburn at UCLA Medical Center. He is known as one of their "Super Doctors" He was very good and actually knew my Dr. No hidden agenda or motive. Does not hurt to reach out. You never know. I see other people have given Dr's in their area too. The more resources the better.

All the best to you.

Ilyse



_________________________
Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.


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#148624 - 04/22/12 02:08 AM Re: Final report on my necrosis issue [Re: ilyse]
Dragan Offline
"OCF Canuck"
Platinum Member (300+ posts)

Registered: 07/02/06
Posts: 445
Loc: Regina Saskatchewan, Canada
One of my oral surgeon ( who is related to me)has a nurse on his staff that is very familiar with my case history. She's taken on the challenge of researching the topic of necrosis generally, post cancer treatment necrosis, necrosis of ths skull and jaw and ultimately treatment protocols wither currently in use or under some level of evaluation.

Her goal is to weed out the obvious "experiements", identify Doctors and treatments that look somewhat promising, and explore them in greater depth.

Ultimately, we're hoping that she can narrow down any options available and try to identify something that may be worth investing time and money in pursuing it.

This entire issue has become a "challenge" both to my cousin and his staff member. I'm VERY fortunate that I have these people in my corner; if there is something viable out there, Doris will find it. She's a pretty tenacious lady.

Finger's crossed...we'll see what develops
_________________________
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06

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#148626 - 04/22/12 04:22 AM Re: Final report on my necrosis issue [Re: Dragan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9092
Loc: PA
Wayne, here is the link to the thread I mentioned earlier. Its a doctor in Miami Florida. I dont know if this person would be helpful to you but its worth a shot. Good luck!!!!


Miami surgeon
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148654 - 04/23/12 12:22 AM Re: Final report on my necrosis issue [Re: ChristineB]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
How wonderful that you have these marvellous people working for you Wayne.
Between your oral surgeon cousin and his nurse Doris I hope they do find something viable for you.
I will keep my fingers crossed for you and hope that something very promising comes to light soon.
Love
Gabriele
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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