| Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Well said and thank you for you kind words, support and patronage . I intend to retread these words in a few years and laugh like a hyena because I'm still here to do it heh heh. 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: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | I also don't comment all too often, but feel the need to say that I really admire your compete level - your sheer desire to get past this & your positive outlook. Really hoping to see some improvement for you.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hi Hellion,
I also read all your posts and appreciate the updates. Don't have any advice other than to keep fighting! Wishing you the best!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Another update, Received the second infusion of the two medicines last Friday and so far, so good. There are some potentially dangerous side-effects but up to this point I have escaped them (touch wood). The biggest fear is debilitating, dehydrating diarrhea which can hit up to about 50% of patients. Nice to be on the right side of a coin flip for a change . I did have a terrible couple of weeks of nausea, perhaps due to radiation, perhaps due to the treatment - no one is really sure. I was unable to eat or hold down anything for about half of the last two weeks. Fortunately, through much experimentation, they seem to have hit on a good combination that is working. I will warn you all, however, that the fatigue associated with this treatment, at least for me, is pretty staggering. I need a nap after doing almost anything and I think I could pretty easily sleep/doze/zone for about 20 hours every day. They are working on that, as well. Additionally, although this may be unique to me, there has been associated a terrible loss of appetite - it is hard to motivate myself to eat - it's like a job. So.... There is the update. Things are otherwise fine. We get a scan in four weeks and that will be our first of two markers - if I do not show response by the second one, I'm off of the trial so let's all please keep our fingers crossed for me unless you really don't like me in which case I would ask that you not actively root against me . I hope everyone else is faring well, or at least as well as can be hoped. Good luck to us all - remember - we must keep fighting if ever we can. I have had days where I forget that, so sick am I, but I have such a great friend to always remind me - yeah, you guessed - my wonderful wife. No matter how low I get, she manages to find just a bit more energy and encouragement to feed back into the system. Cheers, all! The Hellion
Last edited by TheHellion; 02-15-2016 05:55 AM.
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 | Thank you for continuing to keep us updated. Your posts will help many others in similar situations.
You have hundreds of friends here cheering you on. Many, many read your thread and dont comment.
Wishing you all the very best with everything. 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Glad to hear from you, Hellion - and hoping for good results with the scan. Since the treatment is tiring you out, we'll assume that its REALLY knocking the cancer on its butt. 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: Apr 2015 Posts: 91 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2015 Posts: 91 | Have been reading your posts. I hope all goes well for you. I am pulling for you! Denise
Biopsy tongue 3/24/15 Diagnosis SCC tongue/floor of mouth Partial glossectomy, resection and right neck dissection done 4/22/15 T2aN0M0 05/01/2015-no further treatment indicated at this time, monthly check ups for two years
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Dear Hellion, You are an example of true strength and courage. Your tenacity is admirable. As Maria said, perhaps your profound fatigue is a good sign. May your appetite and vigour return soon. Thank you for keeping us posted and being a trailblazer in this new process fighting cancer. May the force be with you!
Love 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 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 | Hello Hellion, I always read your posts. You too , are forging the way of the future for those that must follow. I am standing firmly in your corner, rooting for you. All my fingers and toes crossed for a very positive outcome. You and your wonderful Wife have my admiration. 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 | Hi Hellion,
Glad to know you are not suffering from diarrhea, not so much because of the diarrhea itself but the attendant problem of dehydration. As for the lack of appetite, have you tried watching cooking shows to help make your "job" easier?
Hang in there, dear friend. I am rooting for you. Much credit to both you and your lovely wife.
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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