| | Joined: Nov 2015 Posts: 6 Member | OP  Member
Joined: Nov 2015 Posts: 6 | Hi first post!! diagnosed 7/22/15. 3/4 hard palate removed. obutrator in place. eating is hard and messy ( comes out my nose yikes) Very angry, very sad and everything in between. refried beans and pureed peaches make me happy. Sherbet is helpful when I am VERY upset with my prosthetic. life has changed again. I am so glad to hear that I am not just a whinner, suck it up,and "you have the good cancer" and so on. I think my situation makes others very uncomfortable and they want it to just go away. Well that ain't happening. So glad to be alive and to share me.
malignant tumor of hard palate 722/15
surgery 8/15/15
clear margins
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! Its always great having another survivor join our family. You are among people who understand the obstacles you are living with.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I just LOVE your attitude, Miss Pam ! And I'm so glad you found this great place to be. It is frustrating when well-meaning friends just don't get it. They really are uncomfortable because they don't understand and don't know what to say. . . and then end up saying the wrong thing. But they do worry about you and want you to be OK. My son told me early on what he didn't like to hear and so I warned everyone. Just hang in there. Lots of people here can help you with their own experiences and knowledge, so keep coming back. And Miss Pam - I am so glad that refried beans and pureed peaches make you happy! Just keep finding things that make you happy and DO them!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | Welcome Miss Pam, your definitely not a whinner , your one of our family . We know how you feel . Life certainly does change , everyday things are more difficult for us and it gets you down. I'm still learning to adapt to things but you do and life is good again. X
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
| | | | | Joined: Nov 2015 Posts: 6 Member | | OP Member
Joined: Nov 2015 Posts: 6 | I was afraid no one would respond. Thanks so much!!!!! I am not alone anymore.
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | 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 | From one messy eater to another, I didn't think of refried beans.
Glad you have found us. You will always have a place to share problems, get advice and talk to people who understand.
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.
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | Hi Pam! Glad you are doing well. I also love retried beans and I always put some of the queso on them! I make a bit of a mess if I put too much in my mouth at once. I am just so glad I can still eat regular food. What a blessing that is! I am an RN also and live right next door in Kentucky!!
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: 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 | Hi Pam, I too want to welcome you here. It is a fabulous Forum . All of us understand the challenges of post treatment.
I too am an RN, on the other side of the world in New Zealand.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Welcome to OCF you are not alone, YOU have an ARMY full of Warriors on your 6 ready to help, listen and be there for you!!! Keep up the good fight. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Nov 2015 Posts: 6 Member | | OP Member
Joined: Nov 2015 Posts: 6 | does anyone have suggestions on how I can clean out my sinuses after I eat. boy does that sound ICKY, but it is a real problem.
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2015 Posts: 29 |
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | My son used a Neti-Pot and it did help him.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Nov 2015 Posts: 6 Member | | OP Member
Joined: Nov 2015 Posts: 6 | THANKS I tried the neti pot today felt clean for the first time in a long time Got a new book a guide to cooking and eating soft-pureed food.. I don't want to eat, but these two avenues will make it easier.
Thanks everyone. I love you
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Welcome, Miss Pam! You are never alone in OCF and in these forums. We are an elite club that no one ever wanted to join, but here we are...strangers who have become great friends and the family we always wanted! There are certainly some people on this forum that have done lots of experimenting with different food textures. ChristineB has a list of "easy to eat foods". I would suggest a crock pot and perhaps the Vitamix blender (OCF has a partnership with them). Here is the link http://oralcancerfoundation.org/vitamix/...or just go to the main page and you'll see the link. I hope this helps! 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: Nov 2015 Posts: 6 Member | | OP Member
Joined: Nov 2015 Posts: 6 | Hi, the neti pot was a success !!!!! I am making new recipes for soft-pureed foods. Still hard to accept the textures, but Its getting better
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | Joined: Nov 2015 Posts: 6 Member | | OP Member
Joined: Nov 2015 Posts: 6 | I have finally made my follow up appointment with my surgeon. Just don't want to know what he has to say.
miss pam
RN psychiatric hospital
67 years old
1st diagnosis 7/22/15
1st surgery 8/15/15
radical excision of hard palate
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Make sure and think of any questions you might have for him and it does help if you can have someone go with you to help you remember what he/she said. If someone goes with you they can help remind you of stuff. When my son was in cancer Tx, my daughter, my nurse friend and I all went with my son and later it helped when we checked with each other to "interpret" or remember something positive the doctor had said. Is your appointment coming up soon? If it's a long way off, sometimes they can move it up so that you have less time to worry about it.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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