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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: 4976
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: 508
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/SND 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.
Just turned 40 and grateful! 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: 2604
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: 442
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: 8515
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: 442
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: 8515
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: 1291
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
Surgery GIST 8/2013

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