#94132 04-23-2009 02:14 AM | Joined: Apr 2009 Posts: 5 Member | OP  Member
Joined: Apr 2009 Posts: 5 | Welcome everyone. The past couple of days i have been reading posts on this website and wanted to thank everyone in advance for thier input.
My girlfriend who is 29 years old was just diagnosed with Squamos Cell Carcinoma of the up gingiva. I am tired and frustrated at the answer that i get in that surgery is the only option in her case and they would have to cut out part of teeth, bones and gums just to get this cancer out.
I am trying some holistic approaches while we get all of our Scans done.
Has anyone had any success with alterantive treatments to just ripping out her teeth and bones?
Last edited by Leo Florin; 04-23-2009 02:15 AM. Reason: Grammer
| | | | | Joined: Apr 2009 Posts: 5 Member | | OP Member
Joined: Apr 2009 Posts: 5 | Also what do i need to prepare myself with in this case for me to get ready. Emotionally and physically. | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The best thing you can do is be there for her at all times. She is going to need someone she can depend on to help her and to take her to appointments. You have to keep her mind in the direction that she is going to beat this stuff. A good care giver is one thing she will need for sure. As for alternative meds, forget them. You wqaant the best for her and not someones pipe dreams or snake oils. I lost all of my teeth , had radiation and chemo after losing them. Then I had to have radiation seed implants put into my tongue and be in isolation a few days surrounded by lead and no visitors. I remember none of this and I guess should be glad. I was just told I am cancer free now and that is the best news ever. Stick with that girl if you love her and do everything she needs. Just make sure she gets treated at a Comprehensive Cancer Center. Good luck to her and make her the lite of your life.
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: 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 | What she needs is tried and true approved medical approaches and that never will include internet cures. We all know the frustration that comes with being told we have cancer and then hit with the harsh realities of treatment but believe me if you want to see her turn 30 you better stop feeding her emotions with unproven quackery and endorse proven medical science. You can always encourage her to get second "qualified" opinions at a Comprehensive Cancer Center. Here's a list for your convenience: http://www.oralcancerfoundation.org/resources/cancer_centers.htmDon't mean to be so abrupt but this is a very aggressive cancer and I have seen far to many people die an inhumane death from it.
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: 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 | Welcome to OCF. Alternative treatments will not cure cancer. Get her to a comprehensive cancer center immediately so she has a chance to beat this. Oral cancer is very fast moving. Surgery isnt easy either is chemo or radiation but its sure better than dying.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | It will be tough but she can get a denture that will make it look liek nothing happened. It will be along provess it won't be easy but surgury radiation and chemo are the only trie dand true methods of kicking this disease.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2009 Posts: 5 Member | | OP Member
Joined: Apr 2009 Posts: 5 | Dear New Friends
I aprreciate in advance all the help that i am getting in this forum. We have been moving very fast on this matter to try to minimize the time that she will have this cancer in her. We are getting ready to schedule surgery today and I know that we have a long road ahead of us. In the meantime i am trying to detox her and at least get her spirits up. As far a denture is concerned I think that she will be fine.
I am trying now to research Possible implants in the future for her. I hope that she can get them to restore her natural biting function. Any thoughts? | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Leo
You will be more than tired and frustrated if you go "holistic" instead of realistic. You will be guilty and remorseful that your girlfriend died because the doctors gave you accurate answers instead of wishful thinking,
that said, go to a CCC, perhaps they can put together an agressive combo of radiation and chemotherapy instead of the surgery. I went that route the first two years but had to face the facts and get surgery when it came back,
Nothing wrong with being healthy or holistic: I did yoga, pilates, no sugar, etc etc, it just does not cure cancer,
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Leo
for yourself, stockpile PATIENCE. Go with your girlfriend to every doctor appointment and treatment, Take notes independently and ask questions for her if she is not up to it,
Being a caregiver is harder than being a patient in my mind as I see what my wife suffers.
If not body has mentioned it yet, discuss getting a PEG (feeding tube) before the surgery if there is going to be any issue of swallowing or eating, It will really help her out,Take care of yourself during this time as she will really need you,
finally, have HOPE
Charm
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Leo,
I'm happy to see that you have abandoned the alternative treatment route. All that would have done was wasted valuable time.
You're getting way ahead of yourself starting to research implants at this point. There will be plenty of time for that later.
Right now you should concentrate on learning all you can about being a caregiver and how you can support your girlfriend as she goes through her treatmant.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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