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.

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.

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!

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!!

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

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

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.

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!!

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.

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.

As Eric said, there are a few of us around that can speak to this surgery. It is a massive surgery, with involvement of a lot if different disciplines, and a large part of the body overall. Recovery is not quick, but it is measurable. Three weeks after release from hospital following my surgery ( which was very similar) I was on an airplane across country for a conference.
There WILL be surprises, good and bad. Likely some setbacks too, along the way. I thnk the single biggest thing that will get you all through this phase is your perspective; it is a PHASE of treatment, it will be short term in the grand scheme of things, and he will adapt to all of the elements of his "new normal" at his own pace, in his own way, but HE WILL adapt. Some of us fixated on different things during the surgical phase...for me it was the trach...I could NOT wrap my head around that and it scared me to death.
Once The surgery was over, I discovered that it was really much less than I'd expected, it was not nearly as awful as I'd thought, and I kept thinking over and over again...."this is helping me to get well"...
It's a tough time, but it sounds like he has what we all need most; a good support network. Be there for him, and he'll make it work

Mancias
Before surgery a family member should speak with the nutritionist/dietician at the hospital about post-operative nutrition. Depending on the doctor's instructions and progression of healing he will go from liqiud feedings to more solid foods and there is much that can be done to accomodate the various challenges that this surgery brings to swallowing and taste. Check with your FILs dr. and insurance about post operative support. Occpational and physical therapists usually start care in the hospital and there are followup home visits. The hospital had a medical social worker who ordered at home visits by a nurse, for oc and pc and got a walker and portable potty chair delivered to my house. It is important to help make him as comfortable as possible after at home. For a while he may need some one available to assist in normal grooming and hygene tasks, taking medications, and feeding. I found it helpful to have disposable cups, napkins, spoons, and bottled water in my room at home. This save a lot of work for my helpers - husband daughter-in-law, and 10 yr old grandson - who came and went. One of them could leave me with individual containers of applesauce, soft drinks, juices, and such so I could have something when no one was there. My biggest problem post op was that our tubs were too high for me to get into and for a bath chair to span and there was nothing close enough for me to use for leverage to swivel in. Eventually I got so frustrated that I put a thick towel over the track for the shower doors and sat on that to get in and out of the tub. The family will find that such trial and error solutions are not part of the doctor's field of expertise, but you will find answers from those of us who have "been there" here.

Wishing a speedy and complte recovery,
Malka

Thank you all for your continued support! I can't believe this but I cleared my internet cache and couldn't logon!! anyway, I am back and my FIL is in the hospital as I type. He had surgery a week ago today. It took 14 hours to resect his jaw, replace with plate and fibula, and free flap from his leg and chest for inner / outer jaw area. Skin graph from his thigh....after 7 days, He is up to 2x a day of physical therapy, he covers his trach and talks really well and I can't believe how great he is doing. Honestly, my mind/imagination was so much worse. His doctors have been wonderful so far. He moved to regular room out of ICU just a few days after surgery. Thankfully he is swallowing his own saliva which is really good and we did training on maintenece of the trach and feeding tube yesterday. Our doctor wants us there the day they release him from the hospital and wants to see us clean / care for the trach and give him a feeding with no nurse help so he can make sure we know what we are doing. He will go to a rehab facility from there and then home with nursing. The doctors say that the surgery couldn't have gone any better. They did several biopsies and all his margins were benign which is awesome. He had nothing in his cranal nerve that we were concerned with and I can't believe how well he says (or writes) that he is feeling
My biggest concern now is him coming home and us making sure he gets his nutrients and stays as strong as he has been. They want us to feed him 6 cans of ensure type formula a day. I want to ask how long they forsee the feeding tube to be in place if he is already swallowing but this is where we will need your expertise....but I am sure we have a long road ahead....
Thank you to all of you for your notes and advice. (Christine, your advice on the trach was perfect) Now we just pray that his recovery continues to be as good as it has been. I am sure we will hit some bumps in the road but we pray his margins stay clear. The dr.'s want to give him 6wks of recovery and then another round of radiation / chemo just to be sure. The radiation is what scares me. I want the new tissue / bone to survive it and I pray he isn't in loads of pain.
Right now, he looks really strong...I am assuming he will be able to do a lot himself but I think we will be nervous to go to work with him at home ( I only work 1/2 mile from home and am flexible to go home at lunch every day so is my brother in law) just praying we all have the strength to get through this like we have so far THANKS to all of you and I will be back with questions I am sure

Mancias, congrats to your FIL!!!! It sounds like you prepared for the worst but it turned out much better than you had hoped. Clean margins are what you want to hear. It sounds like your FIL is doing excellent. He is sailing right thru! I know its rough and there is a long road ahead, but he is doing very very well. Im so happy for you that he is recovering so quickly.

A huge part of the recovery will be continuing to get proper nutrition. Make sure you get the feeding pump for when he comes home. There are 3 ways to do the feedings. Try them all and see what works best for him. If he gets nausea from the formula, add water. If it is being done with the pump, then slow down the rate. Its alot of trial and error when it comes to getting it just right.

Im glad the possey muir valve trach works so well for him. I had that kind and it made things so much easier for me.

Keep up your positive attituide. Im a big believer that a good attitude helps make things easier on the patient. Best wishes to your FIL's for his continued recovery.

Thanks Christine! I will make sure and get with the case manager tomorrow about the feeding types. I want to make sure he is comfortable, getting the proper nutrition and digesting correctly...so far it is a 750ml of water after each can but we will see what works best for him.

Thanks again to everyone for the advice

When doing feedings, make sure he is inclined, never lying down. I have the head of my bed raised about 6" and then also sleep on 2 pillows.

Well, he has been home for a little over a week and it has been smoother than expected. The "new" normal is really become kinda normal. Skin graphs and his leg are healing great. he is able to swallow but still has his PEG so, he'll enjoy a glass of ice water and loves that treat. The Dr.'s want to keep the PEG and Trach in until all radiation is done. He starts 6-8 weeks of radiation next week. (5 weeks after surgery). The results from the actual operation were exciting as the lymph nodes were clear and so we are shooting for a possible cure here! I am not sure what to expect from radiation. I know it is every day (mon-fri) for the next several weeks and I just hope that the new tissue and flaps survive it all. We have been extremely fortunate at his healing so far and hope it continues. It is good to read everyone's posts and get tips from other posts. Thanks again!!

Its always nice to hear someone is doing well. Thank you for posting such an encouraging post! I know its been difficult, the surgery is a rough one. Excellent news with the clear lymph nodes.

When doing radiation and chemo, make sure you pay close attention to his intake. A minimum of 48 oz of water and 2500 calories daily is what he will need to maintain his weight and energy. Even more is better!

We are all in your corner rooting for your father!

Thats awesome. Glad he's doing so well! Radiation is hard but Woth support he'll do fine! Take care and healing vibes being sent his way.

I wanted to log on and thank everyone for the advice and support in what was such a tough year. Having your in-laws move in your home while trying to raise little ones is one thing, but to go through this surgery & recovery etc just adds to the cake!
I am happy to say that last week we got news that my father-in-law is in remission!
His PET, CT and blood work came back great. He will have to follow up every 3 months for 2 years then every 6months etc...
We are just ECSTATIC with this news.
On top of that this week is the first time when he has skipped tubal feedings and is eating solid foods for EVERY meal. My culinary expertise has been challenged but we are getting along great! We have come so far! He is regaining strength by the minute after all of that radiation, chemo and weight loss. Our holidays were filled with gratitude and love. Thanks again to all the support here, your advice was so well used and appreciated
~Marlen Mancias

That is fantastic - you are a great daughter inlaw and caregiver!!

Hi Marlen,
I just became a member last fallish so was not really a part of your journey, but from one caregiver to another...you ROCK!!! It was my husband going through tx, but we also have 3 kids and my 86 year old mom moved in with us August of 2010. I can completely relate to what you have been through and you sound positive and upbeat!! You are obviously a gracious, loving person. I got chills reading your post!!
Best of luck on the continuation of your journey.
Blessings,
Kathy

Marlen, I am so happy that you have come back with such great news! I love when members have success stories. Im sure the past year has been a very long difficult one. A mandibulectomy is one rough operation. Recovery can be very long for some of us. Thank you so much for coming back to check in. I had wondered how your FIL made out. Please dont be a stranger!

Marlen - How wonderful to hear the great news! Sounds like your father-in-law is making such good progress! I'm sure the love and care that you and your family share with him have been a big plus in his recovery. Hope everything continues to get better and better ever day.

One thing I was forced to become aware of, is role of lymph glands in healing. fluids normally flow to lymph glands, and when they are removed by surgery, or damaged by radiation, swelling is difficult to reduce. In my case, I still have oozing wounds on the scar line, and bleeding gums while sleeping, but have found, if active enough, muscle action dramatically helps, 15 months post surgery.