Hi all,

I am doing some research to help with my coping and understanding of a recent diagnosis to my future father in law.

my future father in law (ive been engaged about 2 and a half months) has been diagnosed with a cancerous tumor that resides near his left jaw bone. He�s been going to a bunch of specialists for a while to try to pinpoint the cause of the pain he�s been feeling for the past 6-9 months, and they�ve finally found the tumor. He has surgery scheduled for Wednesday to remove it (along with some of the surrounding bone, tissue, and muscle), which will then be followed by rounds of radiation/chemotherapy as appropriate and then reconstructive surgery when the area is cancer-free. They have also seen some "bumps" on his neck so they will open the neck during the surgery and check that out/clean it out as well if necessary. I�ve been told that the surgery will be tricky, most likely an all day affair, but that they are optimistic about it and the chances are good that the cancer is localized to only this area. He will be in the intensive care unit of the hospital for about a week and then either return home or go to general care based on how things go.

I am trying to remain optimistic but get very scared when i read about the survival rates and everything that he will be going through in the upcoming months.
- does anyone have similar experiences- with tumors near jaw bone? this happened to my future father in law in the past and they did surgery to remove it. the current tumor is behind his scar tissue.
- what is he allowed to eat/drink, what can i bring him that will help?

feeling very overwhelmed, scared, nervous. but it has helped now that i have found this website to talk to others. thanks in advance for your help.

Does your future FIL also live in NJ? If so,he has access to several excellent CCC's Comprehensive Cancer Centers and I hope that is where he is being treated. What is the name of the hospital?

There are many members that will be giving you some feedback, but it would good to know some things about his diagnosis and treatment, such as staging and the name of the chemo. This information can be put into your signature section so you don't have to keep writing. Take a look at some of th signatures so that you will have an idea of what should be there, then go to your profile and add the info at the bottom.

Palmtree, welcome to OCF. You will find lots of support here and help with your concerns. An important thing to remember, everyone here is different. We all heal and respond to treatments/meds in our own way. Please add a signature line when you are able to. There are several members from NJ/PA.

Ive just gone thru a similar operation. My lower L jaw was removed and replaced with a steel jaw. It sounds like my surgery was more involved than what you described. My cheek was removed, thats where my cancer was the cheek and it invaded my jawbone. I was in ICU for a few weeks, then a few weeks in other parts of the hospital. Radiation/chemo I had during my first round of cancer so I didnt have them. Thats also why it took me a long time in the hospital. Skin that has had radiation doesnt heal as well.

Let your FIL eat/drink anything he can. Currently, I use a feeding tube and eat only very soft foods like yogurt, soup broth and pudding. This is only temporary, things will improve.

Your FIL will have whats called a neck dissection. It takes a few lymph nodes from his neck and checks them for cancer. It will be done while he has his other surgery. My surgery was about 11 hours with 5 surgeons. You will see the neck dissection abbreviated as ND.

There are a few of us here who have gone thru this type of treatment. Best of luck with everything. Let me know if I can be of further assistance.

Hi christine, im glad you have been through a similar experience. i think he'll be having the same surgery you did, but will have chemo/radiation after he heals. he is supposed to heal for 4-6 weeks before that part starts.

i will update my signature, once i know more details- i honestly dont know much ive only been told 2nd hand info from my fiance.

my future fil lives in syracuse, i know he is having the surgery done by an ENT but i dont think its a CCC.

See if you can get him to visit this site. It will be invaluable to him.

i definitely will... he'll be in the hospital for up to a week and then home recovering- once hes at that point and has a lot of "time on his hands" so to speak, ill suggest this place for him. thank you!!!

Palm,

I too have had a similar surgery. My primary tumor was on my right side, in my molar area. It was a large tumor that destroyed my jaw and took up nearly the whole side of my face. I also had 3 lymph nodes that were cancerous.

My medical team needed to shrink the tumors before surgery so my radiation and chemo was before surgery. The surgery was done at UWMC in Seattle and was a 17 hour fun fest. Due to the size of the tumor there were complications, during the surgery my facial nerve was compromised, paralyzing the right side of my face.

My jaw was removed and replaced with my fibula and my inner cheek tissue was removed and my mouth was lined with tissue from my fibula area (fibular free flap). I had a ND removing 40 some odd nodes during this surgery.

Christine (my hero) is completely right in having your FIL eat whatever he wants as he can. A PEG tube may be inserted and be fed by that or if he can eat orally he may only be able to get down liquids. Have your FIL sign up to this sight so that he can get support from those of us that have walked down this path. It will be important for advice, support and just to vent.

Your FIL may only get 1 chance at beating this beast so be sure to get the best care available...Cancer Care Centers are a great option there. Good luck if I can be of any help I'd be happy to help, although ChristineB is my hero (among others on this forum) and I believe so valuable in the info department.

Good luck

hi thank you for your story and advice eric S!
future FIL went into surgery on wednesday. the tumor was removed and the doctors are fairly certain and optimistic they got it all out. the flap was taken of his chest/side area and inserted- apparently during the surgery they were at first not going to insert the flap, and leave it open, but then decided to.
i am not sure if there was a full neck dissection or not.
he was in the ICU wednesday through sunday and then today he was moved into regular surgical inpatient! they said hes been healing well and is no longer considered "urgent care".
thank you for your advice so far and ill continue to keep you updated/ask questions.

forgot to mention- he did have his whole side of the jaw removed/teeth included, steel jaw was insertd. facial reconstruction will happen down the road. right now he has trach and peg tubes in. will he be getting fake teeth inserted during reconstructive surgery? thanks!

Sounds like your FIL is doing very well. Thats great news. I have a jaw made of steel too. The teeth would be done by a specialized dentist or oral surgeon familar with prosthodontics. Sometimes teeth are put in immediately during surgery.

hi Christine. I heard you are famous here on these boards! its comforting to know you have been through the same thing.

the residents helping my FIL out have said "he looks like what they study in their textbooks of what a patient should look like after surgery". The doctor comes in with a flashlight every day and checks the flap and says its healing well. yesterday apparently it started to pull a little bit, but my fiance says that "always happens"???

today was not as good a day- apparently my future FIL was a little more anxious and very drugged up.. prior to today though hes been walking and stuff and healing well and they had started taking out stitches. they also replaced the trach tube with a smaller trach that he can talk out of. they also took out

i dont mean to sound harsh, but i was wondering if there will come a time where the doctor will sit them down and give them more indepth info about what happened during the surgery, what stage of cancer he is in, what the prognosis is, etc...

Famous, thats funny!!!!

It sounds like your FIL is doing very well for having gone thru surgery so recently. This might help you with understanding the stage. My ENT explained to me that since my cancer was in the jaw bone, I was a Stage 4. However, it was caught so early it didnt even show up on the PET scan. I would have been a stage 1 but it was in my jaw bone.

When your FIL has someone there and his doctor visits, they should ask him/her questions. All of this should have been discussed before his surgery. Im glad you have found OCF to help guide you. Maybe it would be a good idea to write a list of all your questions and pass it along to someone in Syracuse. Then they could ask the doc directly. Once yor FIL is released from the hospital, he will have a follow up w/ the doc. That would be a good time to ask too.

When you have time, please add a aignature. It makes it so much easier for other OCF members to help you. Its under MY STUFF, then click on profile to add your info.

Hope I was able to help you.

thanks christine... i added what i know about him in the surgery. im in NJ and theyre in syracuse and i've been getting limited info. I think part of this stems from my fiance's family being unfamiliar with the medical field and possibly being nervous to ask questions. You're right- I am sure this may have been discussed before the surgery and it just was not communicated to me.

with the steel jaw, are you still able to eat or drink I see you have a PEG in now, but when you didnt?

i feel really bad that he might be coming home right around thanksgiving... it will be really torture for him to not be able to eat with us
i dont mean to be rude but do you have suggestions of how i can kind of "comfort" him in that regard? he said he would just be sitting in his room while we ate. What can i bring him that will help him feel included? do you miss food when you're at that point or do you stop craving things? thanks so much for your advice.

PS i made a signature... i realized its not as technically advanced as some others are like yours, im just putting in what i know right now. ill add to it more... thanks.

I eat smooth peach yogurt, chocolate pudding with whipped cream, milkshakes, Wendy's frosty's, mashed potatoes, mashed sweet potatoes, won-ton soup broth and french onion soup broth. I just bought some jello cups to try.

Im hungry most of the time. I watch others eat and wish I could have just one bite. TV is the worst, too many food commercials. I had the peg tube for 1.5 yrs which got me thru 2 rounds of oral cancer. I just got rid of it in Jan. Since I lost my teeth from the radiation treatments, its not easy for me to eat. I had planned on having dentures by the end of this year. Now that got delayed and Im hoping by next spring. Then I should be able to eat much more.

Since you arent that far from me the grocery stores might carry the same brand of yogurt. I eat LaYogurt smooth and creamy peach yogurt. Its the only kind out there that doesnt have a single chunck of fruit in it. It has a yellow wrapper. That would be a good starter food for him. Mashed potatoes with gravy are easy too, just so they are smooth without chunks. Im a stubborn patient and refuse to have the peg tube one minute longer than I need it.

Is he able to drink water? Has the hospital given him a swallow test? He doesnt want to eat til the doc or a therapist says its ok or he could choke.

Palmtree, he will be fine with his life as it progresses daily. Don't go by what he says he will do, but what he does do. We might have all had the feelings about food that you guy does, but we forgot them when the time was here. It is much easier to forget about the great foods and deserts at Holiday times than many imagine. I enjoy the odors as much as watching happy faces eating and enjoying. Have great Thanksgiving and enjoy. Give your man my best. EzJim... Make him a plate of dressing with gravy and other things he can handle. Watch the pie because of the sugar burns our mouths get.

hi thanks to both of you christine and ez jim!
he had water for the first time today! i thought he might have to use a straw or something at first, but he has was apparently able to just sip it. he was happy about that. hes expected to be discharged sunday or monday and will come home with the peg tube. im not sure if he'll be able to eat mashed potatoes and all that yet but ill keep it in mind as that time comes and he can do more.

we were told hes going to have to keep the trach in through radiation since the face might swell and it might be harder for him to breathe- is that normal?

also, although at first we were told the flap was healing well, now weve been told its pulling in a couple parts but theyre "waiting to see what happens"- what are the various options? my fiance says it will either take or they will 'cut some stuff out'...

future FIL came home monday 11/23 just in time for t-giving. today the visiting nurse was at the house, and he had a strange odor that we thought may be from the dead skin of the flap but it was much much stronger today. he also apeared paler and is having a hard time coughing up flem from his trach tube. they sent him to the ER in an ambulance because they are worried this may be a lung infection. he is stable now, nurse said this was precautionary....

future FIL came home monday 11/23 just in time for t-giving. today the visiting nurse was at the house, and he had a strange odor that we thought may be from the dead skin of the flap but it was much much stronger today. he also apeared paler and is having a hard time coughing up flem from his trach tube. they sent him to the ER in an ambulance because they are worried this may be a lung infection. he is stable now, nurse said this was precautionary....

i have a question re: swallowig. future FIL has trach and peg in now, supposedly he was told to swallow water but he doesnt want to. should be making sure to do this so he does not lose his ability to swallow? is this a possibility?

Yes, he must keep using his throat muscles or he will lost his ability to swallow maybe forever. Water is good. He also must keep opening is mouth as wide as he can, yawning helps, or he will get trismus.

What are you using to pull the phlegm out of his trach tube? Does he have a portable suction machine? A long handled QTIP may help as you can wind the mucous around it and pull it out as a string. Sorry he is having so much trouble and hope he is feeling better.

Take care,
Eileen

thanks christine!

we found out that he will be having both chemo and radiation at the same time starting two weeks from now (at first we thought it would be radiation then chemo).
has anyone had this kind of treatment or is this the best path to take? I heard it is very aggressive but works well.
I am keeping my fingers crossed that things go well, any advice any of you have on this kind of treatment is much appreciated.

I had rads and chemo combined then had to have my teeth removed for radiation seed implants a week after the removal. It is no fun and maybe it wasn't necessary. The rads and chemo were a pain but the rest I have doubts about. Good luck and I hope this works well for you.

Most OC patients have concurrent chemo and radiation as the chemo is supposed to weaken the cells making them more receptive to the killing power of the radiation. I was told the concurrent chemo would increase the rads kill rate by 20 to 30%.

What type of chemo are they using?

thanks jim and david.
what are radiation seed implants?
i have no idea what type of chemo they are using- as soon as i learn i will post here- i get limited info.
he already has his teeth/jaw on the one side of his mouth removed... would they remove the other half also? he went for his mask today...

The only reason teeth would be normally be removed is if they were already in poor condition. If his remaining teeth are in good shape, he might want to see a dentist to get floride trays made. I dont know if that is a possibility for him since he very recently had such major jaw surgery.

Best of luck to your FIL with his upcoming treatments.

He's going to begin chemo (Cisplatin) beginning January 4th. He'll receive 7-8 weeks of treatments once a week and he'll be having radiation 5x week during the chemo treatments.
christine, what is cisplatin like, i see you had the same thing?
is this a normal duration of chemo/radiation? thanks

A side effect of cisplatin is hearing loss. I was not affected by this. Having the weekly chemo treatments make it easier to tolerate as it is given in a lower dose. I was scheduled to have 3 large doses, the third dose was cancelled due to my reaction to it. I was very ill. Davidcpa can explain cisplatin much better since he had his hearing affected. What your FIL will be getting is what most patients now get.

great thanks- i have been talking to davidcpa about similar issues too- you guys are the best resources!!!!

I had Cis the older way which was 3 larger bags during radiation. We have recently seen more members say they got it in 6 weekly doses. The only "study" if you want to call it that since the 2 pools were not very similar, didn't conclude there was a benefit favoring one delivery method over the other. That said it does appear that the ones getting it in smaller weekly doses seem to fare better in the side effect arena. I don't remember many complaining about the nausea and none complaining about hearing loss. I did talk to my docs at Moffitt and they still favor the 3 dose method.

Re the hearing loss, if he experiences any "ringing" or a buzz in his ears then he needs to inform his MO immediately as that is the damage occurring. Not all of us (like everything else) seem inclined to get the damage but the ones, like me, that do have damage it is permanent and most always affects the higher frequencies. Of all my side effects it's probably near the bottom of my dislike list but certainly if it can be avoided it's better.

Nausea is another common side effect of Cisplatin. There are many different anti nausea meds out there. Some that provide instant or breakthrough relief and some intended to work in the background for longer lasting relief. Again what works for some doesn't mean it works for all and vice verse. I was one of the lucky ones that nothing seemed to work for me. I will also say that I didn't have the benefit of this site's wisdom during my Tx so maybe I gave up on some meds prematurely? I was such a stubborn pigheaded scared idiot during my Tx.

My teeth were in good shape until the PC started to play with them, I was having teeth break off , fillings fall out, andwhole teeth were falling out of my mouth. I was one that went to my Dentist no less than 3 times a year pr every 3 months. He could,t bekieve how bad things got in my mouth. In implant is Radiation radiation seed implants that they insert into your tongue from beneath your chin. This is very miserable and I at times wonder about this decision from the Drs.

LOL that is OC not PC for sure. Sorry about that.

no problem. thanks guys to both of you for your advice.
im guessing he wouldnt be getting seed inplants in his tongue because his issues are in his cheek/jaw not the tongue...
i'm going to advise them to be on the alert for ringing in the ears

hey everyone,
just thought i would send an update. i realize i now likely fall into the "in treatment" forum but it seems to make more sense to just continue the convo with those of you who have already responded to me along the way from when i first started posting in november.
future FIL is doing well. he is tired a lot, but i think its good for him to sleep. trach and peg are still in, he is in his third week of radiation and chemo. hes been getting chemo 1x per week and rad the other 5 days. i visited last weekend and he was in good spirits, just tired a lot. sometimes he falls asleep while you are talking to him. is this normal??? i know this is very tolling on the body so i would rather him sleep and recover. due to the surgery he has no movement on the one side of his face. it is very swollen, but has decreased significantly since the surgery. ive been told it wont go down any more until facial reconstruction.
our wedding is planned for september, i am hoping everything is going to go OK.

after the rad/chemo rounds end, how long does the team of dr's wait to do a PET scan?

Some get the scan a few months out. My team is waiting for 5 months. They say they get too many false positives with early scans. My tumor area is visable with the naked eye (soft palet) so most of the early follow ups have been simple visual exams.

Kelly

andy is on IMRT 26 and he falls asleep while im talking to him...so i hope it is normal...maybe im just boring him lol.

This Tx is very taxing on our body, both physically and mentally and each of us can handle it differently so whatever is normal for him right now is just that. I know that starting about my 4th week things really went south and I spent most of my days laying in my bed watching TV and drifting off to sleep whenever I needed to. I don't ever remember falling asleep when someone was talking to me but whatever works. I will say it will probably continue to be more taxing on him especially the few weeks POST Tx so be prepared.

thanks guys. its hard because i am in NJ and they are in upstate NY so im not there but i know theres much to prepare myself for.

As far as the swelling is concerned, my docs told me after 6 months its pretty much what its going to look like. However it may go down a tiny bit more. It takes a year to heal from this type of operation. After the 1 year mark then the docs know what they will be working with and can do reconstruction surgery.

I cant wait for mine. Im tired of people staring at me. I stare every single one of them down too. If they want to speak to me, I would gladly tell them why Im so funny looking. I was told it may take liposuction to make my face more symetrical.

Best of luck to your father in law.

im sorry for the cruel staring, christine. they just dont know how inspirational you are!
i know my future FIL is very self conscious about his appearance currently and does not want visitors, i am sure he feels the same way you do and have for a while.
i did not realize it takes a whole year until reconstruction- is that typical? looking at the timeline in my signature, is that what you would predict as well?

sorry ur FIL has to go thru this...and ur family as well.

people can be so cruel. mostly ignorant...

Yes it takes a year to recover fully from this surgery. It is so invasive. At one year after treatment I got scar revision surgery. They did liposuct some extra fat out of my face so that it looked more symetrical to the side where they took out so much tissue. It looks alot better. I still have a big scar under my chin to my neck which I may get lasered down at some point.. Some of the scar revision was covered by insurance-- some of it was considered "cosmetic" and wasn't but at least some of it was.


So sorry to hear about your father in law. I hope he makes a full recovery
and at least with some time will feel comfortable around family and friends while he recovers.If people love you you they don't care what you look like. I understand how painful it is to go through this and have such an assualt to the face... Its really hard.
K

Palm tree I read your post but forgot to answer your question about Rad seed implants,, sorr about that.. Implants are done this way, They put you in a coma and then take you to the OR and go up thru your chin and make some holes in youe tongue. THen take you to radiology and Xray where the made to holes to make sure they are right. Then back to the OR where they put Radiation Seed Implants up thru thr holes and insert the Rad Seeds. Then you are put inside a lead shield , because you are radioactive and then put in Isolation and no one except A nurse checks on you for supposedly 3 days of the coma. After the 3 days you are taken to a room to wake and recover. I was out for 4 mot=re days and I guess they thought I was going to die. I was readied for an extended care facility for the 8th day but woke up on the 7th one. The implants and mt ongue give me more problems than any of the surgeries or biopsies 2 years later. I have no idea if it helps kill the Cancer, but I am alive and smiling thru it.

WOW jim that sounds really scary and intense. i am very impressed that you can speak of it so calmly! i dont know if he'll be going through that, currently hes just been having his rad treatments through the mask. but i guess we never know what is down the road. god bless you for getting through all of that.

Palm...I was told the same thing as what Kate described. At the one year point my docs will go back and fix things to make me more symetrical. Most important thing is to remove the cancer, all the rest is cosmetic and can be taken care of later.

Hope all is well with your FIL.

thanks guys...
so he had his last chemo treatment yesterday. He was supposed to have the final one next Monday, but he is losing his hearing in both ears-- because of the hearing loss he's experiencing, the doctor decided to stop with the chemo yesterday. he goes to an audiologist on Thursday for an evaluation. He still has 7 more radiation treatments. The surgeon told him after the last radiation treatment that he has to 'heal' before talking about reconstruction surgery. He was/is in alot of pain from the radiation/chemo and had the doctor prescribe a pain patch (fentanyl). It seems to help a bit. it makes me a little nervous that the stopped the chemo- did any of you experience something like this? hes been going for a total of 7 or 8 weeks now... do you think theres a chance they may resume the chemo later?

are they just cutting one chemo out but he is still going ahead with radiation?

yes thats correct. hes been doing 5 rads, 1 chemo each week for the past 7 weeks. they are cutting out next week's chemo session but he still has 7 more rads.

correct me if i am wrong but they normally do chemo with radiation. i dont think he will have to "make-up" one chemo.
in andys case, he did 3 rounds of chemo, then 35 rads/1 wk chemo. he was scheduled for 40 rads but due to complications, had to give him a break. he is scheduled to resume both in 4 weeks.