| | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | Has anyone on this board survived a 4th recurrence? Im so scared that this is it for my Mom. And Im home by myself today so Im just festering and thinking the worst and crying while trying to clean because shes coming to spend the night tonight. We have to wake up super early to go to DUKECCC. We have an appointment with the chief of staff.
SHes so tired, shes in so much pain. Shes developed some cough. Is it possible to overcome this? It just feels like we're slowly being tortured
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Anything is possible! I'll be praying for you and your mom, I can't even imagine how you two must be feeling.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | There are many on here (Christineb for one) that have had multiple recurrances and are still in the fight. In Christine's case there were literally no "breaks" between recurrances.
As I've said on these forums many many times (and many agree with me) that the caregiver's role is the hardest job on the planet. With that being said, make sure you are taking care of yourself as well as your mom.
Best wishes, my heart goes out to you and your mom.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Carol L is another who has faced multiple recurrences and is still here.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | Thank you guys. We're headed out in the morning. Shes in a lot of pain tonight...Im hoping they just admit her and keep her there. Managing her pain with percocet isnt working
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | 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 | Ive had OC 3x in 3 years. I have had the all clear between each episode. I was Stage I the first 2 times and Stage IV last year. Thanks to my OCF friends around the world praying for me, Im still here. I may look a bit different and have tons of after effects, but Im leading a happy life. It can be done!
Ask the docs for the fentanyl patch. Its much stronger than percocet and lasts for 72hrs. Then they can give something else for days when she has breakthru pain. Nobody should have to hurt, it doesnt help anything only makes things worse.
Please add a signature line so its easier to respond to your questions. Its located under the My Stuff tab, then profile and write in the box on the bottom.
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: Jun 2010 Posts: 111 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | Well they just sent us the hell home. said theres nothing they can do. to set up hospice. im at a total loss
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | I'm so sorry. What exactly did they say about your mom?
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 2010 Posts: 111 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | he said she had dermal metastasis
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | he didnt offer any alternatives either. he just basically said youre fucked and youre gonna die. we couldnt even cry. i think his resident didnt even fully agree with him.
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
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