| | Joined: Sep 2010 Posts: 5 Member | OP  Member
Joined: Sep 2010 Posts: 5 | Hi all... brand new to the board. I have Adenoid Cystic Carcenoma. In Feb. I went to the dr. for an ulcer on the roof of my mouth that wouldnt go away. It turned out to be the dreaded C word. To make matters worse, I was pregnant at the time. I had surgery in March. Lost half the roof of my mouth, (into my sinus cavity) 5 teeth and a section of jawbone. I am 39 years old, dont drink, don't smoke. Lucky me. The baby was born in June, and is happy and healthy. (long story, she's not ours, I was a gestational surrogate for another couple) I just finished radiation treatment #13, and the side effects have just hit full force. My husband is handling things the best he can, but his idea of dealing with things is to ignore them and pretend they aren't happening. So when I need to talk, or need a hug, I don't feel I can turn to him.  Hoping to find support and information here. Thanx in advance!
Gretchen
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39/Female
Adenoid Cystic Carcenoma
surgery 3/10
currently undergoing Radiation
| | | | | 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 | Gretchen, welcome from another PA oral cancer survior. Im in the Allentown area so Im east of you.
Im glad you found OCF but iwhs you found it before your treatments began. Are you using floride trays to protect your teeth? Most patients who have gone thru radiation for oral cancer have specially desgned trays and floride gel. Are you being treated at a cancer center?
Most cancer centers have a therapist for their cancer patients. You will find tons of support here. It would be a good idea to get your husband onto this site so he can learn from other caregivers. This is one rough road as you are finding out. I feel sorry for you that your husband isnt 100% there right now. Hopefully he will turn around very soon. Unfortunately, radiation treatments get worse as they go on and even when its finishied it keeps on working. You will need help! Hopefully you have lots of friends and family who will pitch in.
Wishing you all the best with your treatments.
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 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Gretchen, welcome and our thoughts are with you. As Christine has said, you've indeed found friends here. It's a tough road but doable, and you have everyone's support!
Please keep us informed as ask any questions, no matter how minor or strange they may seem.
Courage!
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: 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 | Gretchen,
Anytime you need answers,support, a hug or just to bitch and scream we will be here 24/7. Sorry you got "lucky" but unfortunately there's a lot of that going around.
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: Sep 2010 Posts: 5 Member | | OP Member
Joined: Sep 2010 Posts: 5 | Thanks everybody. Had a bad night last night, and was pretty down. Hubby ran me a hot bath (my favorite form of therapy) and got me a cup of tea. He's trying. 
Gretchen
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39/Female
Adenoid Cystic Carcenoma
surgery 3/10
currently undergoing Radiation
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Gretchen - How nice that your husband is being sweet to you. A cup of tea and a warm bath is one of my favorite forms of therapy, too. He certainly seems to be trying, and the good old TLC (Tender, loving, care) is an important part of recovery from anything. When my son was recovering from his treatment, sometimes he was feeling so down, all I could do was give him a hug and it had to be a gentle hug because it seemed he was sore in so many places. For many of us caregivers, it's a "learn on the job" kind of thing. just keep coming back here and let us know how you are doing.
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Hi Gretchen. You have found a great place to be here with people who care and understand. I'll mthink of you as you face this battle and I'm sure your husband will be with you all the way.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2010 Posts: 235 | Just wanted to add my welcome as well. It is an incredibly difficult treatment but when my husband was at his most uncomfortable,I would read the posts from the folks that were done and doing well. It's a good reminder that it's a rough road but you get to the other side and ride your bike,or do your gardening, go back to work,etc. Hang in there. You found a good place for that extra support...
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | Welcome to the boards. It is hard for family and loved ones to know what to do. So be as open with them as you can be and patient. My family really had no idea what to do and I was just open and honest with them about what I needed and that helped out quite a bit. I am glad you have your husband, it makes it a little easier to get through.
Radiation is a tough thing to go through but once you get through about a month or so later you feel quite a bit better.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Gretchen!
Sorry you are here but we are a great group, ready to support you through this. You can do it girl!!!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Gretchen- So sorry to hear about your recent diagnosis. Sounds like you are near the end of treatment which is great! It will take awhile to recover but you will. I know this is a difficult frustrating time. Definitely feel free to come here to vent. It really helps to have people who can relate first hand.
XO Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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