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#191988 03-13-2016 06:11 PM
Joined: Mar 2013
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Hi Folks...

Just thought I'd drop in and tell you how I'm doing. This board was so helpful during may battle and I see many familiar names still kickin' which is wonderful. I want to thank those that were so supportive.

As of February 2016, I'm still NED. My "official" three year anniversary is April 24th when I rang the bell.

My Rad Onc did a "scope, poke and prod" and was thrilled at the way my throat has healed. I'm at 90% normal eating and drinking, no issues with taste and my saliva is nearly normal.

Being a musician/singer, I was quite concerned about losing what is essentially a part of who I am. My team at Johns Hopkins was aware and did all they could to insure that and they were successful. I lost a bit of my high end in my voice from the surgeries and treatment but with hard work and vocal exercises, my stamina allows me to perform up to two hours without a break and I've adapted my repertoire to take advantage of my strengths.

While I still suffer from some pretty negative side effects in the form of pain, I'm able to work through them with exercise and pain meds. Pain meds will be a lifetime additive I'm afraid but it's just part of the "new normal".

Music for me has been my life. I went to school for it, toured and performed with major artists, done studio work, commercials etc. my entire career. I left full time performing over 20 years ago but still perform part time. My "day job" is in the CD/DVD manufacturing industry and I've been doing that for over 18 years. I truly believe that enjoying your work is a key to happiness in life and thanks to my team at Johns Hopkins and the blessings of the Almighty, I'm still able to do so.

As a caveat to all this, I want to share an exciting and humbling honor. I, along with 11 other artists/bands have been invited to perform a showcase at this years Merlefest in NC on Saturday, April 30th. You can check out my webpage at www.marktmusic.com for info and performance dates.

For me, this is an honor and feather in my musical cap/career.

Anyway.... again, just an update. I'm blessed. Thank you again for the support during an extremely difficult journey. Continued health to all and to those still in the battle, it's a difficult journey but you can do it!

Positive thoughts and prayers

"T"

Last edited by fishmanpa; 03-13-2016 06:20 PM.

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
fishmanpa #191990 03-13-2016 06:19 PM
Joined: Jun 2007
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Congrats on your terrific progress after finishing the brutal rads and chemo!!! I love seeing happy endings where patients are able to go back to their pre-cancer lives picking up almost where they left off.

Wishing you all the very best with many more happy, healthy years of great music in your future smile


Christine
SCC 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 smile
fishmanpa #191992 03-13-2016 07:22 PM
Joined: Jan 2013
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Thanks for the update! Glad to hear you've arrived at the new normal adjusted well. Congrats on the return to music.


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
fishmanpa #191998 03-14-2016 06:32 PM
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This is great news! Good luck with the music-making!


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.
fishmanpa #192011 03-16-2016 01:03 AM
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Posts: 55
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Coming from someone that had the cancer return to be terminal and also suffers greatly from physical effects of treatments, let me just say that while you may think hearing these things would be hard to hear, the truth is for me that I am so happy for you and I hope you go on to do great things. I was also a musician with many accolades so its great to see that you can still do what you love. I pray that somehow your success story will enlighten doctors as to how to make all cancer cases have the same great outcome. Please know how blessed you are and know that I thank goodness for stories like yours.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
fishmanpa #192043 03-19-2016 01:55 PM
Joined: Jul 2009
Posts: 1,406
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Well, this thread makes me happy and sad of course. The former for you, T. So great that you're able to go back to your former life and are thriving. I used to make music too so I know how it feels.

Jeff, I was devastated to read that word. You've had a hard road and fought the fight bravely, and continue to. I will keep you in my thoughts. We're all here for you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
fishmanpa #192063 03-20-2016 11:14 PM
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Posts: 55
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Thank you David. It wasn't my intention to make anyone sad or devastated. I know my diagnosis isn't the best but I am still in the game. I love to hear the success stories just as much as I did back when I hoped to be one, and who knows, with all these new immunotherapy drugs being approved, I may just still have the chance to be one. I won't lie and say I am not affected negatively by my cancer. I have days upon days where I struggle to cope with it all but I have to remember to live each day as it comes. No one is ever promised tomorrow. I am thankful for the time Ive had and any time that i may have ahead. Whenever I start to think this stuff isn't fair all I have to do is go and watch a few videos of children with terminal cancer and see how hopeful they still are and how hard they are willing to fight when they know they won't be around very long. I would gladly trade places with them to allow them to live a longer life and experience what the world has to offer. Ive been all over the world and I have lived what seems like a thousand lives and many fairy tales along the way. I can't complain. I just want to see cancer cured and not have to watch another child lose the chance to grow up and see the world and all that comes with it.

I know its hard to do when you're back in the real world of family, work, bills, and routines but I urge you all to slow it all down every now and then. Sit down and watch people walk by for a while. Pick up a flower and slowly look at all the pedals. Take a break with some headphones and listen to an old album you used to love. If you have a partner, just take a long walk not saying a word. Do some things that will slow your life down and let you appreciate what you've gone through and what you still have left. If you believe in God, sit down and thank Him for what you have. Just slow down and don't let life fly by to quickly. Remember that there are some of us who would give anything to be able to let it go on for longer. I try to slow life down a lot. I don't want it to all be over so quick. You can always find the good in things if you look hard enough.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
fishmanpa #192069 03-21-2016 09:52 AM
Joined: Jul 2009
Posts: 1,406
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Wise words, Jeff. I read them and agree whole-heartedly.

Thinking of you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
fishmanpa #192074 03-22-2016 08:28 PM
Joined: Nov 2009
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Dear Jeff

I need to read your last paragraph every day.

I have hope for you.

Best wishes.


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.
Alpaca #192101 03-26-2016 07:24 PM
Joined: Dec 2014
Posts: 55
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Thank you.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health

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