| | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2014 Posts: 110 | Thank you Gloria, Don and everyone else. I know I'm not the only one going through this -- it sucks for all of us!
I'll post at intervals when I know more.
The Hellion
SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | | 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 | Ive been following your progress. Wishing you all the very best with everything. Please check in often. You have many who are in your corner rooting for you.
Good luck!
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Glad to hear the trial has begun.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | YAY!!!! best of luck with it. I am hoping for your miracle. hugs.
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: Sep 2011 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | Hellion, I have been following your posts recently. Offering you all my positive thoughts and prayers! Glad to hear you are getting started on the treatment.
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear Hellion,
Here's to wishing you peace of mind as you undergo treatment and hope for a cure.
I know that the anxiety was one of the hardest things to deal with and still is.
I will keep you close in my thoughts.
Love and hope in OCF,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2014 Posts: 110 | Thank you all for your well wishes - we are hopeful! So the update, I did not get Erbitux infusuion on Friday as scheduled -- and I am not taking the experimental as of Friday. They did my labs on Friday and discovered that my CK levels had shot up dangerously, although kidney and liver functions appeared normal. This seems to indicate a sort of ore renal failure scenario possibly brought on by tumor lysis. The good news is we are hopeful that the tumors are dying quickly. The bad news is that I am in for fluids all weekend and lots more labs. Additionally, there is a very good chance I will not be able to stay in the study as I am potentially a dangerous candidate. Certainly I am disappointed as this drug, as a first line, is considered so high potential. We know nothing for certain yet other than that we have to evaluate after they get the CK levels back to normal which appears to be happening with the fluid flushes. Happily, I never even got close to renal failure because of the test they do caught everything early. Speaking for general health, one week of Erbitux has caused the famous rash of which they speak and my face is dry, flakey and itching like crazy, even with the antibiotics and cream. That's OK, though, as I want the tumors dead, dead, dead more than I want to look beautiful right now. There will be time to get my gorgeous face back when they figure out how to beat this thing into at least a tenuous remission if not a cure! My research doc will talk to me at our appointment Friday about next steps. I am hopeful we can stay on the drug -- sounds like it might be working well. Otherwise, it may be on to clinical trial second line which is some kind of immunotherapy but I don't know much about it yet. Again, thank you to my followers and well wishers -- know that The Hellion is far from beaten, but I really need to start winning a dice roll or two! Cheers, all! The Hellion
SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear Hellion, I am sorry to hear about the discontinuation of the Erbitux, however, I am so grateful to hear that they caught the kidneys in time! You have a positive attitude that is admirable in the face of all of this mess! Keep up the good work and may those tumours be gone, gone, gone! Love and hope in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Dear Hellion,
I'm sorry to hear about the complications. But thrilled to hear your bright and strong spirit shine through. Hang in there as there seems lots of ways you can move on this. Good luck. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Always in my thoughts and prayers.
Stay strong.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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