Patient / Survivor Header
Page 1 of 3 1 2 3 >
Topic Options
#135312 - 06/14/11 04:31 PM Father in law needs jaw removal....recovery tips?
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2504
Loc: TN
You have come to the right place for the latest in information and compassionate, helpful advice from those who've been there! It helps to find out everything you can and if you go to the main page (see above link) you will find lots of links as well as a couple of search functions. It does help to have others go with you to appointments, so you can better remember what was said or recommended. I'm sure someone will be along from here who has a more similar experience to your father-in-law's. I'm so sorry to hear about your own father, but this probably has prepared you to be even better at understanding some of what your father-in-law is going through. You seem to be a wonderful, supportive family and that is a big plus in recovery. Let us know what happens at today's appointment.
_________________________
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.)




Top
#135323 - 06/14/11 07:24 PM Re: Father in law needs jaw removal....recovery tips? [Re: Anne-Marie]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7937
Loc: PA
Welcome to OCF! Im sorry to hear about the loss of your father and now what your FIL must go thru. Its not an easy surgery to go thru. Its very long , mine was 10+ hours. Only a couple days ago I wrote to another new member about the mandibulectomy.

If your FIL is able to eat at this point, try to get encourage him to eat all your favorites before the operation. Especially things like a cheeseburgers, mexican, pizza, a nice thick steak or any spicy foods. Its not an easy surgery to get thru but it can be done. It will be a while after this kind of operation before he will be able to eat these things again.


I want you to understand we are all different and will respond to procedures and medications in our own unique way. While I had my share of set backs and struggles, others have sailed thru it easily. I would say your FIL will need help for at least 6 months. I prepared by writing out all my checks for my bills and wrote detailed instructions for my son on how to pay everything and when. I gave my dogs away and moved to an apartment near the hospital and my doctors. I had lived out in the woods about 45 minutes away. Here is a blog I made about my mandibulectomy.


http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=102049#Post102049


The best thing you can do is to make sure your FIL never goes to appointments by himself. Always write down all the questions and the answers. Ask if the doc minds the session being recorded as its nice to sometimes be able to go back and listen to what they said again. Ask for a possey muir valve for the trach. It will enable him to talk without any difficulty. Make sure you ask every single doctor and nurse about this prior to the surgery. I was still telling everyone about it on my way into the OR. Even with the possey muir valve trach, still take a dry erase white board and markers. While your FIL is in the hospital, try to always have someone there with him.

Best of luck with everything!!! We are here to help guide you so dont worry. You will have lots of support to help your FIL.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#135343 - 06/15/11 02:36 AM Re: Father in law needs jaw removal....recovery tips? [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4593
Loc: Toronto canada
You've gotten some great advice - being at the hospital to help advocate for him would help as well at his early recovery stage. Good luck and I too am sorry about your dad... Take care!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

Top
#135364 - 06/15/11 03:16 PM Re: Father in law needs jaw removal....recovery tips? [Re: Cheryld]
Mancias10 Offline
Member

Registered: 06/14/11
Posts: 7
Loc: TX
Thanks so much! we only met with the ENT yesterday and he went over everything about the surgery...man!!
there are so many issues at hand! He will have his entire right jaw removed, replaced with fibula and a leg flap inside and pectoral flap on outside with skin grafts.
my concerns are the feeding tubes, trach, etc...They have moved in with us and we will be there to care for him but it is all scary!
there are a team of 4 surgical teams to do the surgery.
1-gastro for the feeding tube
2-ENT for removal of jaw, lymph nodes, etc.
3-oral surgeon to line up new jaw/ plates
4-plastic surgeons for flaps/skin grafts

This is a lot of doctor's to line up so they won't schedule him for another 3 weeks or so. In the meantime, his tumor is aggressive so he is set for a round of chemo to keep it somewhat at bay until surgery.

The biggest concern that showed up in the imaging was the nerve channel that goes directly to the brain is a few mm wider on the cancer side. Though suggestive and not conclusive that cancer is involved in that nerve. that is what has us all scared the most, is that we go through all of this and it comes back right away.

I started reading on the forums yesterday and looks like everyone has a lot of experience. I know that we have a very LONG road ahead!
We are all very close and all live in the same city which I know that type of support is of immeasurable worth but this is the hardest thing we have ever faced together!

Thanks for your advice so far!!
_________________________
Father in Law Stage IV SCC right mandible. Had resection jaw, replaced with fibula, plate and free flap from leg and chest 07/12/2011...currently has trach and feeding tube through recovery. My in laws are living with us through the process and we are co-caregivers.

Top
#135387 - 06/16/11 02:42 AM Re: Father in law needs jaw removal....recovery tips? [Re: Mancias10]
nicki74 Offline
Senior Member (100+ posts)

Registered: 11/26/10
Posts: 128
Loc: NO
hi, first of all so sorry about the loss of your father to this terrible disease and God bless you for stepping up and getting this information for your father in law.. he's truly blessed to have you.. my father had this surgery in December 2010, it has not been the easiest 6 months, but he is still here and trucking along.. he too has the trach and g-tube, you will be amazed at how second nature this will become to you.. the recovery like all the survivors on this amazing site have mentioned is different for everyone.. i find myself getting up in the morning and immediately getting on this website, it has been my sanity.. these amazing people can tell you what doctors just do NOT understand..
many prayers go out to you and your family.. please keep us posted..
God Bless
Nicki
_________________________
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12

Top
#135392 - 06/16/11 03:23 AM Re: Father in law needs jaw removal....recovery tips? [Re: nicki74]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1843
Loc: Idaho
A few of us here have had a mandiblectomy as well as Perineural involvement (pni) and are still around to give advice about it. It is a big surgery and PNI can be an issue but nothing that can't be handled. Feeding tubes are no big deal....I miss mine as it was easy to shoot scotch down for a quick buzz.

This ordeal is trying but with a good support network , good medical care and the will to live there is life worth living afterwards.

Keep your chin up and welcome to OCF

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.

Top
#135577 - 06/20/11 11:20 PM Re: Father in law needs jaw removal....recovery tips? [Re: EricS]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Christine, you forgot to say just eat anything. That is within reason. Hell, even burnt toast would be a treat and as you know. I have my jaw removal on hold. Not chicken just fighting harder. Listen to Christine. She has had more than enough for 4 people and knows what goes.
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April

Top
#135599 - 06/21/11 03:39 PM Re: Father in law needs jaw removal....recovery tips? [Re: EzJim]
Mancias10 Offline
Member

Registered: 06/14/11
Posts: 7
Loc: TX
Thank you everyone for the advice and he is going through Chemo this week. This is to keep the tumor at bay while the surgeons schedule a date and we do all the pre-op visits / tests. He is responding really good to this new "cocktail" low side effects so far and the tumor is visibly smaller after 2 treatments. Two more this week....Looks like surgery will take place in about 3 weeks if all goes as planned. We really trust and like our doctor's here (we are in san antonio,tx) but i can't help but think that maybe we should go 2hrs away to MD Anderson and just see what they say. I have suggested it but not sure if my FIL wants to make the trip.
He has an appointment tomorrow with the plastic surgeon which I am anxious for because I am sure there is equal risk in reconstruction like there is with resection. Thanks again for the posts!!
_________________________
Father in Law Stage IV SCC right mandible. Had resection jaw, replaced with fibula, plate and free flap from leg and chest 07/12/2011...currently has trach and feeding tube through recovery. My in laws are living with us through the process and we are co-caregivers.

Top
#135600 - 06/21/11 06:26 PM Re: Father in law needs jaw removal....recovery tips? [Re: Mancias10]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7937
Loc: PA
MD Anderson is a top rated cancer center. It would be well worth the trip for a consult at this hospital. They treat hundreds of cases similar to your FIL every year, much better to be one of that group than to be one of only a few at another smaller facility.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#136205 - 07/02/11 04:41 PM Re: Father in law needs jaw removal....recovery tips? [Re: ChristineB]
trishga Offline
Contributing Member (25+ posts)

Registered: 11/29/10
Posts: 38
Loc: GA
Oh Mancias, I have been going through a good bit of what you will be going through-my mother has Stage IV SCC of the jaw-and I want to make sure that you promise us here that you set some time aside each day to take care of yourself, please please!

WARNING--NO SUGAR COATING AHEAD!__
I'm not sure how old your FIL is, but the next few months are going to be very difficult at best. There may be times when he is so sick you aren't sure he's going to make it. THE GOOD NEWS is that I'm confident he will be receiving the best care he needs in these months. Your presence will be vital, but you're not going to have to worry about physically caring for him for at least 6 weeks (hospitalization and rehab, my mom is still in 16 weeks later). By that time you should hopefully be an expert as long as you regularly post on this board.

I have found the family politics to be as challenging as my mom's recovery. It helps me so greatly to come to this board for advice and venting. Everyone here is so well informed in all areas. PLease keep us updated and god bless.
_________________________
Mom age 84 dx stage IV papillary cancer mandible 10/10; non-smoker, drinker, HPV-. Surgery 2/16/2011; mandibulectomy. 0 pos lymph nodes, has been in long-term hospital since March 2011. Returned home 8/11, permanent PEG tube.

Top
Page 1 of 3 1 2 3 >


Moderator:  Eva Grayzel 
Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
1 registered (AnitaFrances), 48 Guests and 3 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
9740 Members
23 Forums
15552 Topics
176607 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8035
ChristineB 7937
EzJim 5260
Brian Hill 4637
Cheryld 4593
April
M Tu W Th F Sa Su
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
Newest Members
Heike, martie_2014, bfbf, Keleigh, lssiii
9740 Registered Users