| | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Michele!
I love your sense of humor, brought a smile to my face! Keep us up to date on your appts!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Michele and welcome to OCF. I agree with you on having a sense of humor. You have to if you plan on getting through life. Well, you certainly found a great group of people to help you through this.
I know what you mean about feeling bad for your parents. I hate knowing how my family must feel...that is one of the hardest parts.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Michele,
Ditto from me--I love you sense of humor and glad you found OCF. Count me in as one of you supporters.
Anita
Anita (71)
CG to husband, Clark, 82,
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
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | welcome to the OCF! you will rely heavily on your sense of humor in the coming months. i love your quote...its beautiful!
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Mar 2010 Posts: 21 Member | | Member
Joined: Mar 2010 Posts: 21 | Hi Everyone, Thank you for your warm and wonderful replies. I got some good news on Friday--The cancer is stage 1. I have an appt this coming Friday with the radiation oncologist to see if he recommends radiation, but I don't need chemo  and right now they're thinking I'm just going to need the partial glossectomy. I'll keep you all posted. Jerry: It's funny you ask about the CCC because, I live about 20 minutes out of Boston and my nuero is in Boston and I'm one of the people that usually make a big deal about having renowned hospitals right in our backyard so it's ridiculous not to take advantage of them---However, as I've gotten older, I've learned to trust my intuition about people (and almost 20 years with a chronic illness has taught me a great deal about advocating for myself) and I just feel super comfortable with the energy of my surgeon--and the ENT (along with the fact that a close friend works in the local hospital in which they are based and they both have very good reputations) Pete: Unfortunatly, the protocols for the Tysabri are very strict. They fastracked it through FDA approval once and then the company voluntarily withdrew it due to some deaths--they re-released it, but under VERY strick guidelines and honestly, I think there are alot of unknowns regarding long term treatment with it. So, If anyone has a major health issue (other than MS) they won't allow them on the Tysabri again because, they don't know for sure, if they Tysabri caused it. For all we know--in 10 years, when they look at the reporting, they could see a trend of Oral cancer in individuals who have been on Tysabri over 3 years-- no one knows. I knew their were unknowns when I decided to do it--and honestly, it made such a difference in my quality of life with the MS--I would continue with the treatments if they would let me... Be well, Michele
Last edited by Michele71; 03-30-2010 11:26 AM.
SCC, R Lateral tongue, T1N0M0, Diag: 3/15/10
38 yrs old at diag HPV Neg, Non Smoker Non Drinker
4/12/10 Partial Glossectomy, No Rads or Chemo
7/15/10 excision biopsy L mid posterior tongue - NEGATIVE
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 |
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Now that, Michelle, is the kind of posting that brings a big  Welcome, and keep us informed. 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 | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That's great news Michele. I agree what you mean about the big hospitals...it's nice to have them if you need them but if you have a good relationship with your docs...that is more important in my eyes. Keep up posted...
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | That is good news Michele. Look forward to seeing what the result of your visit on Friday brings...it can only be positive as it is Good Friday 
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Having faith in your Drs to me is a vital part of the armor we need for our fight. I had one I didn't think much of and he was from the biggest and best known Hospital I have been in. The team from the smallest Hospital, also a CCC, is the ones I have my trust and faith on. I am older than them but they treat me as if I was one of their kids. LOL I wish my "daddy" had that kind of bucks but I loved him anyway.
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
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