| Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | National OC Advocate/Speaker Contributing Member (25+ posts) Joined: Jun 2004 Posts: 30 | Cindy, your perseverance is inspirational! You teach us all how to make the best out of a challenging situation: Plan ahead, ask lots of questions, continue to pursue your dreams and don't put anything on hold.
Are you saying that your fiancee's health insurance won't cover you at all? | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | So glad you stuck to our guns! Most of the time our intuitions are right, Sorry about this recurrence. Youve definitely been through a lot. Prayers for you.
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: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Surgery scheduled Nov 5 to remove the rest of the nodes followed by radiation and a chemo cocktail that will last 4 months. The doctor said the recurrence in this area is rare, but can occur. He has only personally known of 2 cases, mine included. Need MRI for shadow on the PET on my liver. Although the doctor said SSC to the liver is so very rare, now I have to wait again for the outcome. If it comes back positive, all surgeries and bets are off at that point.
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | I wouldn't rely specifically on an MRI - since it can pick up other things not cancerous but it's a good place to start hoping it's all clear! 
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
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Well, I had axillary node surgery and tally was 4 out of 15 nodes( including first biopsy) along with a piece of tissue that appeared to be where the extra capsular spread was.
I will be heading into my 4th time of chemo and radiation, but since it is not to my head and neck it should not be as devastating.(My hope.)
I have joined the ranks of metastasized cancer now.
They are hopeful that since we caught it early in the lymphs and it was too small to show on any scans that maybe we can put up a roadblock.
My Oncologist submitted for molecular testing. I will make a separate post but don't know too much about it, but I sure will learn so I can talk about it next week with my Oncologist.
If anyone has any information on the subject I sure would be interested to hear from you. Thanks much!
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Sucks that your back into the rads and chemo, so glad it hasn't spread beyond where you found it - thank god you stuck to your guns and pushed to have it removed!!!!!!!!
I wonder if the molecular testing will determine what it responds best to. It's like a personalized form of chemo! This may be what cocoa pops dad had. I think you're right regarding the radiation. Not sure about the chemo (it depends on what they are giving you - but I think the rads will be easier. My father in law is going through 5 weeks to his lower esophagus right now. He just started week 4 and his only pain is when eating as it's going down. I think since this isn't in a place where you have any external irritation (like food in your mouth etc) it should be much better. The only concern would be skin and burning. But you've already had it once so hopefully you know how your skin reacts and can plan for it.
Hugs... We're here...
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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