| | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2009 Posts: 108 | It has been a few weeks since I posted about Carol but do visit here every day, I suppose to reassure myself that there are others fighting OC, survivors and caregivers alike, with all the complications, the side effects and how people are living with it.
Last month Carol was diagnosed w/recurrence of OC - 2cm mass invasive SCC of the anterior left lower jaw with the mass sitting on the mental foramen. This mass was found within 3 months of completing aggressive radiation TX (maximum) and 6 weeks of carboplatin for left tonsillar pillar cancer. As a result of this mass the left side of her chin, mouth and lips are numb and even after surgery she won't have any feeling in the area. A few weeks ago they increased her fentanyl patch to 100 and they replaced Lortab with morphine for breakthrough pain. The Lortab might as well have been water as it didn't help with Carol's increasing pain level.
The plan, up to the time she went into OR, was to perform a tracheostomy, ND, resection and mandibulectomy using the scapula free flap. The tracheostomy went well, they removed all the left lymph nodes....the problems began when they started the resection. The more they cut out the more cells they found. The cancer had spread and gone deeper into the jaw bone (all this within a month!). As a result they had to remove the entire left mandible and replace it with a titanium bar. They sent the nodes and tissue from the floor of the mouth to pathology. It'll be a week before the results are back. The Doctors believe this mass is associated with the tonsillar pillar cancer. The surgery lasted 10 hours and the OR nurse called me every couple of hours with progress reports.
At this point I don't know what to think. Waiting another week to find out if there's clear margins or if it has spread. God I hate that word, IF!
It's too soon to tell Carol about the surgery. She's pretty much out of it, but knows when I am there as she seems to be relaxed...if there is such a thing! It'll be a few more days before they will allow her to wear her amplifying device so she can hear. I'm torn between it being a good thing she can't hear the suctioning and all the noises associated with ICU or a bad thing. I can't even begin to imagine what's going through her head. A person having major surgery, can't talk, can't hear...it's just not right.
I'm off to the hospital. They moved her to a room with longer visiting hours - 12 hours! None of this 1 to 2 hours, then "you must leave" for a couple of hours crap.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died
| | | | | 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 |
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 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Linda, I'm so, so sorry. I can't even begin to imagine how difficult this is for both of you. I will continue to keep you both in my prayers. Being a "caregiver" is emotionally and physically draining. Take care of yourself to. Hugs, Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Linda,
So sorry, praying for Carol's recovery and good path report. Glad you are able to spend more time with her, even though I was out of it most of the time, I felt more comfortable having someone there with me. You are an awesome caregiver, such a hard job, don't forget to take care fo yourself too!
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Linda, my thoughts are with you and Carol. You're both incredibly brave.
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 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: 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 | Linda, sending good thoughts your way for a better day today. You are not alone, we are right by your side. Praying Carol is kept pain free. One day at a time. There is hope that the path report comes back with good news. The operation she went thru was a very difficult one. I had the mandibulectomy almost a year ago. It was a 10 hr surgery and I was kept under for 3 wks. Im glad I slept thru it. I know how difficult it was for my son who came to see me every day. He suffered more than I did. I understand how hard this is for you. Never forget that there is always hope and Carol has the whole world pulling for her. Dont forget you need rest too. Please remember to take care of yourself. Best wishes with everything 
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 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Dear Linda,
Both you and Carol are in my prayers. This has got to be so tough on you....
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Linda,
Sending prayers and positive thoughts to both you and Carol.
Make sure that you take care of yourself too!
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Linda,
I'll keep Carol in my prayers that the surgery was successful and they were able to get all the cancer.
I'll keep you in my prayers to give you the strength you need to get through this also. Yes, being a caregiver is tough and seeing someone you care for suffer when there is little you can do.
Please keep us posted. Ditto everyone's comments � you need to take care of yourself also.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2010 Posts: 235 | Linda, I can only imagine how anxious and scared you must be. This is an awful disease to put people through this. It must be so hard to see her like this. My hope for both of you is that she heals beautifully and you get to hear those words"we got it all!!!"
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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