| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My thoughts are to take her to a CCC as these Drs are the best and work in teams to best handle each case . Not 1 Dr but many working as one to make the decisions. They have performed not a few OC cases but hundreds. You sis is lucky to have you. Welcome to our World wide Family.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Welcome, but sorry you had to join us. This is a very unforgiving disease. You can just be there for and listen to her. Allow her to vent and rant and rave. She will need to. Sometimes just being quiet and let her do that will help. I know that as soon as I found out I had it all I wanted was someone to talk to and listen to me, and not try to fix it.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | My thoughts as well take her to a Cancer Center, MD Anderson they're up on the latest.
I'm sorry your sister is going through this, come to this forum frequently, listen to what people have to say they are all very knowledgeable.
Take Brian up on the phone call in my opinion he knows more than most Doctor's.
Your family is in my thoughts and prayers.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Nov 2010 Posts: 7 Member | | OP Member
Joined: Nov 2010 Posts: 7 | EZJim,
Please tell me what CCC means. Thanks friend.
Connie,
I have been told that if you have a lymphoma, leukemia, or certain type of cancer MD Anderson is the place to be but for Oral Cancer I had been advised elsewhere. I am not saying I am correct on this by any means.
I do want to speak with Brian. I tried to PM him with my number and email address. I hope to speak with him soon. I will change plans on the advisement of those on this board. Dr Gahali according to many has a great team of doctors, nurses, rehabilitation people, nutritionist, etc.. I have also been advised that this facility and doctor see OC patients by the masses and from all over the country. JFYI.. Please do not think I am defending this place in way shape or form.. Really, I thought I put in the research time until I found this site with its wealth of info...
I wish I could personally meet and thank each one of you for your caring, others first generosity, toward helping me and my sister.
Thanks so much......
Your new friend
KEN | | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Ken,
Brian will give you input about MD Anderson, I know it's a Cancer Center. I know what I went through until I reach Moffitt Cancer Center, hell. I can't say enough about the place if I lived closer I would volunteer that's how much I think of it.
I also did a Goggle search on your Dr. I couldn't find anything. I then did a Goggle on my Surgeon at Moffitt and came up with pages about him. Not sure if that means anything, it does mean something to me.
I'm sure Brian will lead you in the right direction. I hope you get to talk to him soon. Keep us posted, we all care.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htmAlso: BEST CANCER HOSPITALS http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/MDA is a great choice. I was treated at Moffitt but MDA was my second choice only because of distance. I agree with Brian that HPV is likely out but only the test will confirm that.
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.
| | | | | Joined: Nov 2010 Posts: 7 Member | | OP Member
Joined: Nov 2010 Posts: 7 | Connie,
Thanks for your reply. I actually spelled his name incorrectly. He is Dr Ghali, Ghali Elias.
I just got off the phone with Dr. Wilck. WOW, what an incredible human being. Brian just called so I need to get off this computer and get a pen and paper. Thanks for everything..
Ken
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Ken,
Yes on Jerry he talked to me when I was going through it.
I looked up the doctor you talked about. Hmmmm...he's an Maxillofacial Surgeon, Dept of Oral Surgery. It didn't say anything about cancer surgeon unless I missed it.
If I were in your sister's shoes I'd go to MD Anderson, just my opinion.
I do want to mention I had the ND you can't see the scar and my neck looks like it did before surgery.
Another thing if you go to MD Anderson take all the scans, biopsy reports, the biopsy disk and all her medical records with you. Moffitt Cancer Center wanted the biopsy disk for sure they wanted to read it. This way she won't have to go through them again. If I needed radiation or chemo Moffitt would work with the Radiation Oncologist where I live. That also might be an option if she does have radiation and chemo with MD Anderson.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Hi Ken. So glad you have found OCF. This is the place to get all the help you could ever ask for relating to oral cancer. Since you are a dentist, hopefully you will be able to take what you learn here and use it to help not just your sister but also any patients you encounter who have oral cancer. So far, it sounds like you have been welcomed with open arms. Glad to see you are being steered towards cancer centers and the top places in the country. Your sister is very fortunate to have you in her corner! Keep up the good work 
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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