| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hellion,
I am glad you are able to continue the combined protocol - hopefully any future drama will be restricted to dramatic tumor reduction. It sounds like you are in good hands with your team. It is great having good doctors, it is even better when our know your good doctors are really rooting for you - and it sounds like this is the case.
Thinking about you and all the best.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2014 Posts: 110 | Another Friday, another Erbitux round. My doctor thinks the reduced dosage of the experimental drug is agreeing with me, insofar as my labs are now where they should be. I have my first scan as part of the experiment on the 6th of March and I am hoping to see a Partial Response or Stability reading. It appears the side effects to this study are manageable, now I just have to hope it's actually doing something -- and if it is, that it KEEPS doing something. Turns out, our little cancer cells are pretty adaptive -- drugs like these hopefully inhibit the cancer's ability to feed even if they mutate -- at least for awhile is the hope. So, fingers crossed, but I do want to say out loud (lest I appear unappreciative to the gods of luck and fate) that I appreciated having a nice, quiet, uneventful, non "huh, we've never seen that in a human subject" week. Thanks to my followers and well wishers. I hope you are all doing well and I wish nothing but the best for us 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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Good for you and I hope the next round is met with great success, Hellion!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Right on, Hellion. Hope that things will continue on the right track for you.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | 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 | May the gods of luck and fate smile on you:)
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | BYL719 sounds like a radioactive isotope or something you add into paint. Are you sure they're not just stringing you along and just filling you up with food colouring?
Its just a theory, but you let me know if you start peeing rainbows and the nurses giggle when they see your chart, you let me know ok?
Keep smiling, we're right there with you brother.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | 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 | Keep pushing through!!! 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: Mar 2014 Posts: 110 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2014 Posts: 110 | And so it goes....Still going. It's been a couple of quiet weeks insofar as I do my Erbitux infusion every Friday and take my magic pill every day and we're hopeful. According to my doctor, my labs look great since we adjusted the dosage and he thinks everything is going well...... Today is the first test of that hypothesis. I have my CT scans today to determine if the known tumors have changed (or at least stabilized). I hate these things. A small part of me almost doesn't want to know. Unfortunately, the overwhelming majority of me DOES want to know and, of course, the drug manufacturer DEFINITELY wants to know. I should have results early next week. The Erbitux rash, after seemingly abating, seems to have come back -- it's been terrible on my arms. The dry skin, though, is kind of psychotic. I actually feel like I am made of shark skin -- that hard, sharp scaling all over. By way of side effects, this is not as bad as it gets, but I must say I'm not really loving it, haha. I'll try and check in when I get my results -- work has been rough the past few weeks so I've fallen a bit behind. As always, thank you for all of the well wishes and support! 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: 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 | Hellion, a quiet couple of weeks is good. I am so hoping that your scans show these treatments are working. That you have positive results from the scans.
Thinking of you,
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!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hellion, here's to hoping that you get the results that you would like to have. Best of luck!
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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