| | Joined: Apr 2014 Posts: 2 Member | OP  Member
Joined: Apr 2014 Posts: 2 | I finished treatment about 6 weeks ago - first surgery, followed by concurrent chemoradiation with cisplatin. My taste is still a little off and my tongue is very sensitive, but overall I'm getting close to normal.
My wife got a lot of information from this forum, particularly about nutrition (the chocolate/peanut butter shake was a lifesaver, and my only source of nutrition for about 2 months!) and I wanted to give a thank you to everybody.
I also happen to be a medical oncologist in training (first year fellow). I definitely have a new level of empathy for my patients, but also hope I can be beneficial in some way to other people on this forum.
Thanks for all the help!
31 years old
11/2013 diagnosed, oral tongue, T1N0
12/9/13 Right glossectomy
1/2014-3/11/14 concurrent chemoradiation with cisplatin x3, radiation to tongue and bilateral neck
| | | | | 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 | Welcome. Really good to hear that you have come through treatment and are recovering well.
I'm sure that you will go on to be a wonderful and empathetic oncologist. There is nothing like having been there and done that.
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: 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 | Congrats and remember that during your "recovery" phase which can last every bit of 2 years, consume at least 2500- 3000 cals a day and be patient as your taste and saliva will return slowly and in noticable chunks. My biggest improvement didn't occur until my 14th month PT.
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: 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 | Welcome to OCF! Congrats on finishing your treatments!!! Im very glad we were able to help your wife with support and info during your fight.
There could be other ways to help spread awareness besides the patient support forum. I have sent you a PM with more info.
Thank you and best wishes with your continued recovery.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Welcome to the family and congrats on treatment completion. I remember when your wife joined the forum from her description of you as an MO in training. I hoped you would join the forum yourself so you could benefit from what we have to offer.
My journey through treatment was pretty easy, very few side effects and the ones that did come arrived late in treatment. Easy treatment didn't translate into easy recovery as I've had significant problems with first ropy mucous and then what I'll call drying sinus drainage (feels like glue dried in back of sinuses and upper throat). The NeilMed sinus irrigator (morning and evening) helps a lot as does the use of a humidifier at night. Until I got used to using it the irrigator seemed like more trouble than it was worth; lots of choking, coughing and in general misery to get the benefit it provided. Eventually we get the hang of it and it works as advertised.
I know you will be super busy after training, but I hope you stick around the forum. Your specific knowledge will be very beneficial to our family.
Again welcome and congrats.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey there and welcome. So glad you got through it okay. Hugs - It will be awesome to have you around the board.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Welcome, and congratulations. I hope your healing period is quick and you can soon put all this behind you. And yes, it's going to be great to have someone with your knowledge in the family!
All the best.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2013 Posts: 16 Likes: 1 Member | | Member
Joined: Jul 2013 Posts: 16 Likes: 1 | Congrats on recovery so far. Similar situation here. My wife graduated with a "speech and language pathology" degree one week before my partial glos. She was always bragging that she would put me on her resume with my quick recovery time. Luckily I kind of enjoy showing off my scars and half new tongue off to her classmates. Still can't quite get the taste of sweet right, but sour is just now starting to come back, which is awesome. Cheesecake tasting more like sour cream than cheesecake definitely took some getting used to. It's weird to say, and treatment me would probably vehemently disagree, but I can't help but feel I had a relatively easy time of it. Anyways, just now starting to look for ways to help others through it. Having your clinical perspective I'm sure will help. It's amazing to think about the curveballs that life throws at us. Here's hoping to continued recovery for all of us.
Dan
Stage 4 SCC on right underside of tongue
DX on 7/19/13 at age 29, no tobacco, light drinking
Partial Glossectomy/reconstruction/neck disection 8/20/13
Temp Trach, PEG tube
4/59 lymph nodes cancerous, 1 with extracapsular extension
Chemo - Cisplatin - 3 treatments started on 10/01/13
Radiation - 33 treatments started on 10/02/13
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