| | Joined: May 2012 Posts: 114 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | Hi Tinara!
So sorry to hear about your test results, but it sounds like it's been caught fairly early so that's good! I'm so glad you have come here, these are wonderful people who give so much of themselves. The support is endless, as is the knowledge. I hope you take some time for yourself in the coming days, rest and pamper yourself because you deserve it. We will all be here to help you through what's to come.
When is your PET scheduled for?
Hang in there and best of luck!
Amy
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Hi, Tinara,
So sorry about your diagnosis, but so glad that you found us. You will find that the most amazing people you will ever meet are here. Good luck on your new journey. We will be here for you every step of the way. Blessings and hugs,
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Sorry to hear this Tinara. Keep us updated and we can help answer any questions you may have every step of the way, everyone is so supportive here.
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: Jun 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 31 | Sorry to hear about your test results, Tinara. You are going through exactly what I went through a little over two years ago. As I, and everyone else has mentioned, this forum is the right place for support and information. I wish I was on here when I went through my two bouts.....it would have eased the anxiety, fear and uncertainty to know that there were people who dealt with/were dealing with the same issues as me. Now that I am a survivor, there is still a lot of information here for me, and I'm sure you will find it to be the same. Take care of yourself and keep us posted whenever possible.
Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there mine was the same early stage. That's a bit of a comfort but push to get them moving quickly. Hopefully they'll get you in soon and if your ENT suggests a neck dissection - go for it even if there appear to be no lymph nodes involved... I say this because my tumor was well differentiated and after the biopsy despite 3 clear scans (between dec20 and jan4 ) it had moved into one node and broken brought the capsule - by the time it was removed along with a chunk of tongue 4 weeks later it was 1.5 cm (the node) it didn't matter of course as my surgeon told me from the outset he was removing 40 nodes. There can be microscopic cancer in the nodes that goes in detected by a scan - particularly with tongue cancer - anne o here had a superficial tongue cancer (very very small) but it too had moved to the nodes very quickly - better safe than sorry - I don't want to scare you but some drs make The mistake of trusting the scans remove a chunk of tongue and send the patient home thinking theyre cured only to have a node pop up later... Hugs we're here for you - I imagine your head is spinning - try not to freak you will get through it. Also get to a ccc! If you can! Take care
Last edited by Cheryld; 06-15-2012 09:19 AM.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | So sorry to hear your news Tinara. We will be here for you every step of the way. It will be hard, but you WILL come out the other side ready to live life again! Please keep in touch. We absolutely KNOW what you are going through and can feel your pain. You have tons of support here. Who will be helping you through this at home?
Blessings,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Apr 2012 Posts: 15 Member | | Member
Joined: Apr 2012 Posts: 15 | Hi Tinara,
So sorry to hear that your results were cancer. I would be happy to help in any way if you have questions. Went through very similar discovery and diagnosis when I discovered my cancer. It's a scary process but treatable.
It's okay to be scared. xo
R
neg lesion biospy 1/2007; lesion found 3/2011; baby boy 5/3/2011; biopsy 10/2011; diag. 10/17/2011 T2,SCC tongue; 10/25/2011 part. glossectomy 50% tongue rmvd w/muscle; 11/29/2011 neck dis; HSP 12/3/2011 infection of incision; 12/5/2011 29 lymph nodes negative for cancer. No chemo/radiation.
| | | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | | "OCF across the pond" Contributing Member (25+ posts)
Joined: Apr 2012 Posts: 47 | David back to 100 miles a week, Any old timer that might be able to move some of this to my own string? Good luck Tianra I get the feeling tongue cancer is a cut and ;fingers crossed; a lot of rehabilitaion? While HPV and nodes what I am coming to terms with is chemo rad good sucess but a long haul and a hard road. GOOD LUCK. appears we are all on a steep learning curve. Cuban keith seeing the wisdom in your messages of support. David If am am reading correctley you got out of this illness quick and smooth. I am 12 days into a chemo, chemo radation standard treatment,for 12 weeks? Standard treatment for HPV 1cm base of tongue, 5cm neck node levels 2/3 no spread. The 5 cm is down to 2cm since start of Induction chemo Cisplatin/5FU I am back on my push bike doing 20k  for charity tomorrow? PS where do I learner how to load up my signature at the bottom of my posts? Too much Duff beer.Doh! A Million apologies to Tianara for asking my worry on her post but I am on a learning curve when it comes to posting, blogging. Sufficent to say that 3 months ago this site and the old timers on it saved my sanity. all I can say is that with more results you become more calm whatever the dx and you aquire the skills and knowledge to go forward and stay positive. I hope as the other posters suggest this might be some simple non cancers tongue issue SORRY DUFF BEER MOMENT AGAIN and you only visit as a supporter, if things prove a little more invoved you have come to the right club. YOU ARE NOW A FULL MEMBER my cancer has been a kick up the rear and my life is improving by the day and I am getting support from friends and family that I thought I had lost conections with hope you can find some positives in this thing. this is a club Grouch Marx would refuse to jion? and he smoked cigars. Carry on Regardless.
Last edited by CubanKeith; 06-23-2012 08:28 AM. Reason: asking the wrong question on the tail of not reading the whole post?
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | | 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 | Keith, your posts are a tad difficult for me to understand. Not sure what you mean by DUFF BEER MOMENT. I hope it doesn't mean you messed up the post b/c you had one to many? So you have finished 12 of 84 days chemo/rad treatments?
No I don't think I got out of my Tx quick and smooth but rather I progressed thru recovery as most do. I did have a strong will to get back my pre cancer life and I wasn't affected by the post Tx depression as some are so I was blessed in those respects. I also didn't have any pre or post Tx surgery so that didn't complicate my Tx nor my recovery.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | D'oh DavidCPA
Duff beer is Homer Simpson's favorite brew. Actually this imaginary beer manufacturer presented on cartoon TV series The Simpsons, has become a reality in the UK by simply adding an adjective to avoid legal issues. "The Famous Duff Beer" comes in bottles or cans and at the moment is available in England, Wales, Scotland and Northern Ireland.
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
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