| | Joined: Jan 2011 Posts: 2 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: Jan 2011 Posts: 2 | Hi everyone....i am new..and am sooo happy to find this website..so much to talk about...first..Thankyou to all of you who are willing to share and help me...there is not much here in Alberta Canada...and its great you are all here for the same reason..support and information....i look forward to our future chats...my surgery was last April..i had a partial dissection of 3/4s of my tongue, my donor area was my left arm and thigh...so far so good..have another checkup today...will keep in touch.
Karen N | | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Karen, welcome. So glad you found this place - I felt the same way when I first discovered it. The people here are amazing. Glad everything is going well, and please tell us more!
David 2
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
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Hi Karen,
Welcome to the group..so glad you found us.
To keep from repeating your medical history..please go to the top of the page..under "My Stuff"..."profile"...all the way to the bottom under "Signature" and fill in your information with timelines, etc. See my signature at the bottom...you can use any format you want. That information will help us answer any questions you may have and let us know where you are at.
We look forward to your posts!
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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, Karen. Hope you are doing alright with your recovery from the surgery. You have found the very best place for oral cancer info and support. You will find tons of info on the main pages and here on the forum. Both the main pages and the forum also have a search function.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi and welcome Karen,
Hope all goes well with your checkup and glad to hear that you are doing OK.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Karen,
I'm very glad that you've found our little oasis on the net...sorry you had to but we're sure happy you're here! What you will find on these forums is support and advice from people who've been there and done it and are still in the fight no matter how far out of treatment/surgery they are.
Take solace in the fact that you now have people that will be able to relate to where you've been and what you are currently going through as well as the experience to help guide your way down this crazy road we call cancer.
Big hug my dear, welcome to the fold!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Karenn,
Welcome to the group!! It's the best group of people...although most of us have not actually met in person I feel like I have.
Looking forward to hearing how your appointment went..keep us posted:)
Last edited by suzanne98; 01-19-2011 07:31 PM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Hi Karenn,
Welcome to OCF! Hate that you had to look us up but glad that you did. This is the best group of friends around.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | Hi there, i was glad when i found this forum, so I am glad you did too! I had almost same surgery, mine was on right, i had a "hemi" instead of partial, so they took half my tongue, and i had a neck dissection also. But same flap from wrist and thigh! I also had surgery last april, the 13th to be exact,  Did you have radiation or chemo? What deb said about the signature is a good idea! It helps us to know where you are at in treatment and what you have gone through, which helps us answer any questions you may have, or relate better. Glad to hear you are doing good, and look forward to more posts from you,
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Hi Karen: I am new, too, new to this site, new to cancer. I have only been posting and reading posts for about a week now, and it has changed my life. I feel like it is here (and only here) that people get it. I am surrounded by amazing and loving support, but even my partner is on the outside. On this site, I find everyone's posts full of wisdom and insight. I don't have much wisdom to pass along, but I will try to help you any way I can even if just to say we are here for you. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | 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 | Welcome Karen, and Michele Anne , you've found a great support system here - everyone is great.
I'm a newbie too dx dec. 20. Surgery Feb 4th... EEK... Best of luck with everything!
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: Jan 2011 Posts: 23 Member | | Member
Joined: Jan 2011 Posts: 23 | Hi, I am also new to the site this is my first post. My father was just DX with stage 3 base of the tongue cancer. He has complained of a soar throat for about 4-6 months and about a month ago he actually felt with his fingure that there was something. Left base of tongue) Yes, I am fearfull my father is 66 years old and has no medical history other than a somoker since the age of 13. A biopsy is scheduled with lymph tissue and peg tube placement to. Pet scan shows a little something in base of left lung. I went to his appt. and am surprised how fast they go through things and then after your home all the questions come. I'm wondering do we go ahead with the peg tube before we have the whole plan of treatment in order. I am worried about the side effects to treatment also chemo and radiation is the plan and then possible surg after TX.- Ceazar
Ceazar
Father 66yrs
S4 SCC left BOT
DX Jan 2011
X-smoker
Peg 1/31/11
chemo Cisp, 5fu, tax
Heart attack 3-17-2011
7 Weeks Rad with erbitux
Peg out Aug 2011
Pet Sept 2011 good (no activity)
Pet Dec 2011 tumor hot
| | | | | 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 | Where is he being treated?
A tad surprised about the prospect of surgery post Tx but you don't mention whether or not there may be any nodes involved presently.
PEG placement pre radiation is not that unusual.
WE always tell newbies to take a pad & pen or tape recorder when going to a doc appt and don't hesitate to say "whoa, slow down" to any doc.
Hope he's quit smoking now.
What are they planning to do about the lung uptake?
You can always get another opinion but so far everything sounds normal.
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: Jan 2011 Posts: 23 Member | | Member
Joined: Jan 2011 Posts: 23 | He is being treated in northern michigan, it is a biopsy of the mass and a node in the area because the needle aspiration came back inconclusive. No, he still is having a occassional smoke related to the stress, he states it bothers his throat though. I was told that after the biopsy he will then see the oncologist to see what they say about the lung issue. I feel like I am not getting the real picture or is that just normal?
How did the radiation go? My biggest fear is that my dad won't be able to handle it.
Thank you for the support, it is nice to talk to someone who knows what it is like. Ceazar
Keep on Riding:)
Ceazar
Father 66yrs
S4 SCC left BOT
DX Jan 2011
X-smoker
Peg 1/31/11
chemo Cisp, 5fu, tax
Heart attack 3-17-2011
7 Weeks Rad with erbitux
Peg out Aug 2011
Pet Sept 2011 good (no activity)
Pet Dec 2011 tumor hot
| | | | | 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 | Hard to answer all of your questions without more info but as he progresses thru the Dx more will most likely be answerable.
You will hear this a lot and that is we all can respond differently to the same or similar treatments but again let's wait until we know exactly what's planned for him.
Re the smoking...you need to tell him that if he continues to smoke he will die. Period, end of his life. We have never had a poster, to my knowledge, on this site that smoke during or post Tx that has lived to tell about it and they die in a short period of time in the most gruesome way. Tobacco is what has caused his cancer and stopping it now while continuing to smoke will not prevent it from recurring and since he has shown a propensity of the tobacco to cause cancer in his body then he's playing with a bomb that will explode. Smoking with the stress excuse it just that, an excuse to continue a deadly habit. Getting him to stop using tobacco is just as important as killing his cancer. Doing either one without the other is useless.
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 | Ceazar....Welcome to OCF. Please begin your own posts instead of adding onto another persons posting. This way we can properly focus on what your post is about and not take away from the original post, Karen's. (Sorry Karen)
Ceazar, Im a former smoker. Quitting is not an easy thing to do but this is his wake up call. He needs to conquer the addiction and throw away the cigs and get serious about beating this. Upon diagnosis I was so shocked that I did not quit immediately. It took me about 2 weeks to wrap my head around the idea that I was sick and might not be around to raise my children. I was horrified and couldnt handle one more thing until I better understood the situation. Once I got a handle on it, I threw the cigs away and never smoked again. Please encourage your father to understand that he might not get another chance to quit. I hope you understand Im not beating you up about this, Im trying to help you to help your father. David is also trying to help in the above post.
If you dont think you are hearing the whole story, go with him to his appointments. Nobody should be going alone. They should take someone along to be their 'secretary' and write things down and have a list of questions ready. If he wont let you go, then have him tape record it and write down a list of questions. Most doctors do not mind being taped as they know it is helpful to their patients.
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: Jan 2011 Posts: 23 Member | | Member
Joined: Jan 2011 Posts: 23 | Thank you everyone!-- Karen- I am sorry to invade on your post, I am still trying to figure out how this all works. Thank you christine and Davis for your input, every bit helps. I will post new info as it arises. Thanks again- Ceazar
Ceazar
Father 66yrs
S4 SCC left BOT
DX Jan 2011
X-smoker
Peg 1/31/11
chemo Cisp, 5fu, tax
Heart attack 3-17-2011
7 Weeks Rad with erbitux
Peg out Aug 2011
Pet Sept 2011 good (no activity)
Pet Dec 2011 tumor hot
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