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#148157 - 04/12/12 05:52 PM Re: Frustration [Re: ChristineB]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 691
Loc: Media, PA
Hi, Pat,

My husband also had a mandibulectomy and his procedure happened well after the initial cancer surgery. He has had numerous surgeries for infection control, and exterior flap replacements and most were done by the Plastic Surgeon. He comes home with one or two drains each time. It sounds like you are in a very good place to me (Duke). Everything you have said sounds "normal", although your husband seems to be getting everything at once. That must be so hard for you. Keep asking questions and voice your concerns to his team. You have every right to know what, why and when. Not knowing is the worst place to be. And scariest. Arm yourself with knowledge.

The leg pain lasts a long time, and so does the jaw discomfort. This is a process that will take months, maybe years, to get through. My husband is having his 11th surgery in 2 weeks for recurring infection related to radiation. As hard as all this is, you get to a point where you go along and do what needs to be done. Pain control is super important. No one should be a hero by not getting relief. While lots of things have changed for us, he is golfing and enjoying life. You guys will get there, too.

So, hang in there, keep posting here and know that you are not alone.

My best to you and your husband-
Anita

_________________________
Anita (60)
CG to husband, Clark, 70,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14

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#148160 - 04/12/12 06:58 PM Re: Frustration [Re: ChristineB]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
When they did the surgery they cut his throat in the wrinkle flap and raised his face up. Can't even tell he had that kind if surgery. He looks good, but he is upset this time. Just got a call have to go to Duke, they are going to do something. Will let you know. This is the greatest site. The people are wonderful. I read the site a while before I dared to write. Thank all of you and bless each and everyone.
_________________________
Pat Harris

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#148161 - 04/12/12 08:02 PM Re: Frustration [Re: Path]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
You've found the right place for information and support as everyone else glad you found us sorry you had to. Hope all goes well today with what they are going to do again. Please come back and keep us informed on Ron's progress!
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148167 - 04/13/12 12:05 AM Re: Frustration [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi Pat,
So sorry for all you and your hubby are going through. I, too, don't have experience with this tx, but have been a caregiver and can feel your protective instinct in your words. You go girl I have learned that my instincts were right almost everytime with Kevin. You have to be your husband's advocate here, so if you are really that uncomfortable, let it be known. Be patient with your words, but ask for explanations and expectations. They should understand your questions and concerns since this has gone a little different from the plan!!
Stay tuned in here. Will be praying for things to level out and you to find some peace.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#148181 - 04/13/12 05:13 AM Re: Frustration [Re: KP5]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 501
Loc: MA
Hi, Pat.

I just wanted to welcome you and offer my support. Although I don't know a lot about your husband's surgery, I just think that you have incredible strength. You have been through your fair share of the dreaded "C", so please don't minimize what you have endured!

Your spouse is lucky to have a caregiver such as yourself who understands what it's like to be a patient. It's unfortunate that all of this is happening to you both and I'm so very sorry for this.

You and your spouse will be held in my thoughts and here's to hoping for a full recovery and good prognosis...for you both! It won't be easy, I'm sure. Life is definitely not fair! Best wishes in getting through this one day at a time.
Lean on us any time!

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/SND 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.
Just turned 40 and grateful! Hoping for 40 more!

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#148198 - 04/13/12 01:20 PM Re: Frustration [Re: Kerri]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2600
Loc: TN
Pat - I'm so glad you found this great place to come to for great advice and support. As a caregiver, I don't know what I would have done without OCF. Be sure and ask any and all questions you have when you and your husband have your next appointment. Write them down or have someone else go with you - it helps to be able to remember what was said and check with each other later. Hope everything goes well for both of you. Stay close to us here and let us know what's happening.
_________________________
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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#148229 - 04/13/12 11:50 PM Re: Frustration [Re: Anne-Marie]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
Ok doctor said more surgery next week because the flap under the tongue is breaking down. Today they said they found a bug in his saliva that is causing the problem. They didn't say what the bug is, but it must be a strong one to eat through stitches that have only been in for a few days. Has anyone had this problem?

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#148230 - 04/14/12 12:39 AM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8460
Loc: PA
Ask for specifics. Dont allow them to be vague like that. Ask if your husbnd has MRSA or a staph infection. Both can be a serious problem especially with a compormised immune system. You are his best advocate and they work for you both.

Good luck!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148232 - 04/14/12 12:46 AM Re: Frustration [Re: ChristineB]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
I was not there when they told him...I will find out tomorrow. I know that he has or had predominate gram positive cocci. I have his medical report up until the last two surgeries and I will have those Monday. It does not mention how many nodes they took out, bit dr said all on the right front of neck. Again thanks.






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#148233 - 04/14/12 12:48 AM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8460
Loc: PA
If you dont see anyone to ask, call the nurse and ask her to check the chart. There is always a doctor on the floor just sometimes you have to ask for them to get the answers.

Im impressed by your excellent record keeping! Great job!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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