Hello,
I have been reading your stories here for a week but this is my first post. My husband has just been diagnosed with a recurrence of his SCC. This time the cancer is in his right cheek, and possibly the mandible. We just met last week with the surgeon and today with the plastic surgeon to discuss what may happen in surgery. I know that a number of you have had the Fibular Free Flap done to replace the mandible, and my question is how long was your recovery time? The surgeon told him about 4 weeks but the plastic surgeon said 8-12 weeks. He is a farmer, and if any of you know farmers you know they don't like lazing around the house!
Also, did you have a tracheotomy, and for how long? What was the incision like? They said that his would be from the middle of his bottom lip, through the chin, down the neck and then over to the right. That just sounds so horrible to me!
I am trying my best to be positive and believe that he will again beat this thing. His mood is always positive--I don't know how! His last go-around he lost 50 pounds (that was with a PEG), and powered through his radiation and chemo without taking a break, but there were times when I didn't know if he would make it or not. I'm so scared that a recurrence is a very bad sign, but I don't let anyone know how worried I am.
Here's the kind of guy my husband is: he was explaining to a friend of his that they may have to take bone from his leg to rebuild his jaw. The friend said how awful that sounded. My husband said "Well, then I'll really be able to run off at the mouth!" lol
Thanks for reading this, I really have come to appreciate your wonderful survivor stories and your courageous spirits!
Lori

Lori:

Im so sorry to hear of your husbands recurrance. On the positive side, you have found OCF. There is a wealth of information and support here.

You mentioned your husband had a peg tube and lost 50 pounds. Thats similar to how I was, Ive lost a total of 65 and kept it off for now anyway. Did his doctor recommend getting the peg tube again? It really is very helpful, imagine if he hadnt had it last time. Its much harder to go thru radiation and chemo than having surgery.

Your signature says its Stage 2, has there been a pet scan done? How much have you found out about how advanced it is? My cancer was also in my cheek both the first time and my recurrance. First round was chemo and radiation. Somehow even after a clear pet scan, I had a recurrance in almost the same spot on my cheek as round 1.

Everybody reacts differently and there are so many different types and places a person can have oral cancer. Have you read "trach trouble" from Karen M? Her husband has gone thru something very simialr to what you are describing. The surgery I had for my recurrance went in thru my mouth and cut out the inside part of my cheek. No trach for me. I think my recurrance was much simpler than what you are describing for your husband. Mine was caught very early and it didnt affect the bone at all. I was told that once the surgeon got in there it could have been necessary to scrape the bone, luckily it wasnt. My surgery was done outpatient, but I probably should have stayed over 1 night. I was back to work the next week, but remember I didnt have everything done that you described your husband may need.

Hopefully your husbands case will be similar to mine. If your husband doesnt need to have the jaw reconstructed then it should be fairly easy to recover from the surgery. Im sure someone who has gone thru that will respond to your questions.

Your husbands positive outlook will be a big asset to helping him get thru this. Ive known many farmers and you are right, they cant sit still. There is always something that needs to be done. Best of luck to you both.

Lori- My husband had just about everything you described. The trach, fibular free flap, facial scars and all. All in all he looks amazingly good for all the surgery to his face. The scars didn't take long to heal at all. Unfortunately he has lost alot of weight and still has the PEG tube. We are looking into dentures but he had alot of sores in his mouth from all the treatments he has had. Right now he is on a trial that does not cause mouth sores so we may be on the path for dentures soon. He has alot of trouble opening his mouth wide enough though. His leg looked awful at first but once the tissie settled back it's hardly noticeable. It looked like a shark bite at first but just a scar now. Good luck to both of you-this is a great place for support and advice.

Sue

Christine,
Thank you so much for your reply. Yes, 3 years ago he had a PEG tube. It stayed in until 5 months after his treatments ended. I am so glad he had that in, it really saved his life. At this point, the doctors are only talking about putting in a feeding tube through his nose, just for the duration of his hospital stay. I'm sure if he has chemo and radiation again, they will suggest the PEG again. Or if they don't, I will!

His chemo doctor has already said that he will for sure have some type of chemo again, but he is consulting with the radiation oncologist about the possibility of re-radiating. 3 years ago, he was told he could never have radiation again, so I don't know what that decision will be. Does it matter that back then, the radiation was to his tongue and right neck, and now the site would be his right cheek and possibly right jaw?? I'm not sure if that matters or not, but those beams are so precise it wouldn't be radiating the same exact places.

Yes, right now the new lesion is being called a Stage II, simply because of its size. Since they won't know for sure if the bone is involved until surgery, the stage may change after that. He had both PET and CT scans done last week. The only thing that showed up was the lesion in his cheek, so no mets anywhere else, thank God. I haven't read about Karen M's husband yet, but I sure will.

Your story gives me hope that they will get in there, and it will be only his cheek involved. Thank you so much for your kind words and advice. I will be coming here many times in the next weeks and months. The advice and support here is unmatched.

Lori

Sue,
Thank you so much for replying. I will go back and read your story with your husband from the beginning. I think it helps so much if you kind of know what to expect, even thought everyone's story is unique. I'm so glad your husbands scars healed nicely. My husband kind of wears his scars with pride, be was a little upset when his large neck incision healed so well it really can't be seen! It's funny, when he got his first scar, it was 2 months before the cancer, he had his hip replaced (In fact, if he hadn't had a hip replacement, the cancer wouldn't have been found at all--it was found during the routine physical before his hip operation!). Anyway, after the operation he acted upset about his scar and when the doctor asked him why he said "Well, now there's no way I can compete for Mr. Nude America!" The doctor got quite a chuckle out of that!

I wish you the best of luck with your husband's dentures. I totally understand what a trial that is! Ron lost all of his teeth prior to treatment 3 years ago, and wasn't fitted for dentures until 6 months later, after giving the mouth tissues time to completely heal. He never could wear the bottom plate, it was just too difficult to keep it in. He did wear the top plate, but usually only when I insisted on it. If it were up to him, he would never wear them at all, and on a daily basis, around the farm, he doesn't. I understand that this is MY hang-up, not his. I really try to realize that in the big picture, it is not a big deal at all, but I must admit, I do like to see my husband with teeth!!

I wish you and your husband continued good health and thank you for your words of encouragement. They are truly appreciated.
Lori

Lori:

Im glad Sue responded, she has experience with what you have described. There are several others here who have also gone thru same type of recurrance too. I guess Im one of the very few lucky ones with a relatively easy recurrance that was caught very quickly. I hope your husband's turns out to be like mine.

I always thought the same as you did abotu radiation. You do it once then thats it. Even though it was a different location this time, it probably still would be considered the same place due to it being the same side. Thats how my doc explained it to me, still would have gotten scatter radiation. I dont understand that much about it, sorry. There are several people here who have gotten radiated twice, seems its something that doctors are starting to do in some cases.

Keep posting any questions you have.

Hi Christine,
I'm not sure about re-radiating either. I guess we will have to wait until after the surgery when we will meet with the Oncology team again to find out if they will consider it. When your cheek lesion was removed, did they do a flap to fill it in? I have a hard time picturing just taking out a chunk of tissue there, it's kind of thin to begin with.
I feel like I did 3 years ago, too many questions, answers will come when they come. I think that's the hardest part. The days that you sit at home wondering what's going to happen. I'm so glad I found this forum! Hope you're doing well.
Thanks again,
Lori

Lori:

Its ok to ask questions, thats how you learn how to handle this. Thats exactly what makes OCF so great is cuz there are so many different types of oral cancer and so many senarios. There is bound to be a few who have experience in the same kind as you.

You are correct in saying that cheeks are thin. My 2nd cancer was caught very very early. In Jan my pet scan was all clear and April I had a sore in my mouth. That explains how my ENT was able to get the tumor out without doing any kind of reconstructive surgery. Im a little lopsided with my left side looking skinnier than my right, but its ok. I dont have any scars at all on my neck or face which is amazing. He just went in and scooped it out, he took a chunk about the size of a quarter, and he got it all with clear margins. Maybe it wasnt so bad cuz I compared it to doing chemo and radiation. Had a few complications afterwards, but thats just me being unlucky with my procedures. Hope your husbands goes as easy.

An update:
Surgery has been scheduled for September 30. We will meet with his "Chemo doc" on the 25th to discuss possible future treatments. Since he had Cisplatin 3 years ago, would that be considered again? Also, I know that Erbitux is now being used for Head and Neck Cancers. I remember reading about Erbitux 3 years ago and I asked about it, but at the time I was told that it wasn't "standard" chemo for Head and Neck cancers. I'm wondering if he would have a better chance if he got Erbitux this time. Anyone?
Thank you,
Lori

Sorry to hear this. It looks like this was caught early.
Erbitux has a different mechanism than cisplatin. It selectively targets a growth factor receptor.
It seems to be easier available these days, which makes sense it is a relatively new drug. I think it was approved for H&N cancer in 2006, either as combination with radiation or as a single drug. Also there have been studies using Erbitux together with traditional chemo therapy agents.

It may be possible to have IMRT again. Eve if you do not do this the possibility that is available is good.

M

Hi Markus,
Thanks for responding. I am reading all I can about Erbitux just in case it is mentioned for my husband. I was sorry to read about your anaphylactic response to it. Very glad you were being watched closely! That must have been a frightening experience. Still unsure about more IMRT also. I hate for Ron to have to go through all of it again but from what I have read, I think chemo works better when used with radiation (?). So as hard as it will be, I kind of hope he will do both again. We just want it gone!
Lori

My husband had the Erbitux after radiation and Cisplatin together did not stop the spread into his lungs. The Erbitux gave him a horrible rash and splitting of his fingers and toes. Unfortunately it did not work for him. However, we have a friend who has had a recurrance after several years and it is working like a charm for him. Good Luck!

Sue

Hi Lori,
to be sure the anaphylactic reaction is quite rare and can be caught very early on if somebody watches. The majority of the people (>80%) on Erbitux get a rash (of varying severity).
Chemo agents enhance the effects of the radiation, this has been shown for platin compounds and I believe also for Erbitux. Both rad and chemo kill cancer cells and the idea is that the combination provides the extra punch to cause these cells to pack up an die. In addition to the local effect chemo also has some distant action.

Markus

Here is some more info on Erbitux.
http://www.fda.gov/cder/foi/label/2004/125084lbl.pdf

Hi Sue,
I'm sorry the Erbitux didn't work for your husband. Thanks for your kind words. How is your husband's trial going? Hope all is well.
Lori

Hi Markus,
Thanks for the link to the Erbitux info. Have a lot of reading to do. Whatever it takes to make the buggers pack up and die!
Stay well,
Lori

Lori,

So sorry for the recurrence - once should really be enough. My story is similar to your husband's. Diagnosed in 2006 with floor of mouth cancer. Had surgery to remove it and a skin graft from my left thigh. I went through radiation with no troubles and a positive attitude that all of the nurses just loved. Whne they see me cry now they put their arms around me and I am sure that they wonder where that smiling girl is.

In June this year I was diangosed with recurrent floor of mouth cancer, tongue and possible mandibel. My surgery is scheduled for 9/25 and I will start a blog this week so that my friends can stay up-to-date, Possilby you would like me to e-mail the blog address to you after you see what type of surgery I am having if it would help you and your husband,

They plan to remove the left half of my tongue and replace it with skin and arteries taken from my right forearm. I developed blood clots in the left arm when they put my port in so it can not be used. They plan to try to take only the inside of my mandibel, but could have to take it all. The plastic surgeon says that I am not a candidate for the replacment with the bones from my feet due to poor circulation. But they may have to do it and hope for the best. I had the radical neck dissection with my first surgery in 2006 and the nodes are still clear.

Well in a nutshell that is about it. If you think keeping up with my progress would help you and your husband just e-mail be privately and I will send you a link to the blog,

Patty, what I did when I went in for my free flap was set up a Yahoo email address, transferred addresses of all the folks I wanted to keep informed to it and then had a close friend use the email to update everyone.

I figured that I might not be up to it at first, which is exactly when everyone wants info, and it turned out that I was right. Everyone was kept informed, I could later read their comments and it allowed my friend to be helpful.

Lori:

Good luck with your husbands surgery next week. Hope it goes smoothly and he recovers quickly.

Lori-I'm keeping good thoughts for the both of you.

Stay strong!

Sue

I had the Erbitux and rads at the same time. Really I didn't think it was that bad, but it was no picnic either. Give him my best and the best to you too Lori

Thanks to all of you for your good thoughts. We are gearing up for Tuesday. I appreciate your comments so much. Special thanks to Sue, Christine, EzJim, Patty, PeteD, Markus, and anyone else I missed. The support is fantastic. I don't know if I can do this here, but I have a blog about my husband and it links to OCF.
http://ronswife.blogspot.com
Sorry if that's inappropriate to put it here. I hope to keep it updated as we go along.
My best to all of you,
Lori

An update: Ron's surgery on Sept. 30 took 9 long hours. The cancer was much larger than they thought. He ended up having an excision from his right cheek all the way back to the right tonsil. He was also expected to have his mandible replaced with his fibula, but in the end they did not use the bone, so they threw it away! They did have to take half of his mandible before they got clear margins. We are now still waiting for him to heal more before treatment again. He had a PET scan again 2 days ago. I am the kind of person that has to look at the scan as soon as he brings it home, and from what it looked like to me is he still has an area on his right cheek that reacted, along with a new spot like behind his bottom lip. I don't know if that's true, and I certainly hope I'm wrong. I know I shouldn't look at them, I just can't help myself. One thing that I am so angry about is the surgeon did NOT remove his right tonsil, even though it contained cancer cells. He simply "shaved" it until it was clear. Even Ron's Oncologist said that he would have been a hero if he had removed it. Can anyone explain why he wouldn't have taken it out? Ron ended up in the hospital for 11 days because of abdominal complications, but thankfully he didn't have to come home with the trach. If you check my blog you can read about the conversation I had with the surgeon in the hospital that made me so upset. Anyway, we go back to the Oncologist next Monday to discuss treatment. When we saw him last he was recommending 10-12 weeks of Erbitux. He still had not been able to convince the Radiation Oncologist to re-radiate. I hope by Monday he will have come around. Ron is so willing to fight this again with everything he has, so I think it's only fair that his team back him up. If not, we may have to go elsewhere for another opinion. It's not like he doesn't know what to expect. And we are both quite clear about his quitting point. When and if his scans show mets all over, then he will stop treatment and just ride his Harley and enjoy his remaining days, but this is not that time. Thanks to you all for your good wishes and great counsel.
Lori

Keep going until you get the answers you need. You sound very well informed and have a clear plan of action. I'm impressed!! I had radiation a 2nd time - but it was to the other side of my neck and mouth. I'm not a physician, but I do not understand the argument against re-radiation if it offers any hope at all. When I was diagnosed with a recurrance I told them "hit me with your best shot! Good luck.

Donna

Lori:

Thanks for the update. Glad to hear your husband is on the road to recovery, or maybe I should say partially finished with treatments. You mentioned getting a second opinion. To me, a second opinion is always a good idea. Best of luck with your upcoming appointments, hope they go as you want.

PET scans this early typically yield false positive results, I am almost surprised that they ordered one this soon - an MRI would have made more sense.

The partial tonsil resection thing doesn't make sense either?!?! I know it's a little late to ask this but is he being treated at a comprehensive cancer center?

Since he received IMRT he might be a candidate for re-irradiation if the cancer is not in the exact same spot. Also there has been some clinical trials with re-irradiation and the results have been promising. The side effects have been less severe then they anticipated.

Sorry it's been a while. We didn't get very good news from the PET/CT. There are now three new areas. Right parotid, right paralingual, and left Thyroid. Also there was uptake in the anal region, but the oncologist thinks that was artifact. He now has to have a Thyroid scan and a Colonoscopy before he can begin treatment. The waiting is agonizing for me--I feel like if within six weeks of the operation, the cancer is back with a vengence, how can they wait like this? We also don't even have an appointment yet for his port placement. Now we will be into December before chemo and radiation can start. I just get so angry at what I see as a broken system. When treatment does start, we know it will be Erbitux and IMRT again. We have not had our appointment with the RO yet, that is this Wednesday. Ron has it in his head that he does not want the PEG tube again. This worries me, but he knows what to expect this time, and I feel like it should be his decision. I guess if he is losing too much weight, it could be put in during treatment. Three years ago, he could afford to lose the 50-60 pounds he lost (and that was with a PEG tube). Now he really can't afford to lose that much.
Ron loves his team, but I am wondering if we need to at least get a second opinion. There is a cancer center in Madison, that's only about an hour from us. When we saw the oncologist for the PET results, he basically told Ron that there would be no more surgical options at all, we would just be treating from now on, and trying to buy a few years. He said that "If we're lucky, we will get another three years." That was hard to hear. I told the doctor that we would like to do some traveling, and asked him to let us know when we should start. He smiled and said probably after Ron is done with treatment and feeling better we should begin. I know that he has no crystal ball and Ron may do better than he thinks, but it scared me. I don't want to lose him, especially not that soon!

Have the majority of you gotten second opinions, or have you stuck with your original team? I don't know that Ron is even interested in a second opinion. I know that if I made an appointment somewhere else he would go, but would never think to do it on his own. Thanks for all your support.
Lori

I believe you can get a second opinion by "mail" by sending all his scans, reports, radiation history, etc., to someplace like M D Anderson or the center in Madison -- With the scans, he really doesn't need to be there unless someone wants to palpate him -- Not much to see...

That's what I would do before accepting a verdict like this -- If I did accept it without doing that first, I am sure my family and friends would give me no peace!

I would suggest considering MD Anderson in Houston. MDA is probably the finest CCC in the world with vast experience and treatment capabilities.

There web site has info regarding patient self referrals.

https://www2.mdanderson.org/sapp/contact/selfreferral/index.cfm

I can say nothing but good things about my referral and subsequent treatment at MDACC. A second opinion is always a good thing even if it simply confirms what your first team says...it helps eliminate the what ifs.

Susan

Don't listen too much about life expectancy. The amount of new drugs coming out every 6 months is something to think about. Some people have gone from one drug to the next drug for more than 3 years and are still going. What will it be like 3 years from now? Only better! Keep going. All the Best. Tom

Lori,

We were in contact while I was having surgery at the same time that your husband was. You have had a rough road since then and I am so sorry.

I am having my second radiation treatments following the second surgery with the Erbitux once a week. It was decided that I had enough new tissue and the margins were close enough to warrant the radiation a second time. I have been given some scary "worse case" things that could happen, but so far I am ok, just red and raw. You are not far from the Cancer Institute at St John's Hospital in Springfield, IL. They are nationally ranked as a cancer treatment center and affiliated with SIU School of Medicine which has some very good doctors.

If it were me, I would get a second opinion and try to go to a facility with a reputation as a successful cancer treatment facility. I find it upsetting that they are taking so long to get started with treatments. I am fairly aggressive about my treatments though. There are more treatment options available and who knows what they will approve for treatments next. If Ron will go for a second opinion I would ask him to. I wish you luck and will keep you and your family in my prayers.

Quick update all:
Turns out the PET was not exactly correct (as many of you said it might not be!). The Thyroid scan came back clear, as did the colonoscopy. There are some good things! However, the RO would not agree to start radiation of any kind until and unless he was SURE there was active cancer. He sent Ron back to the surgeon for a biopsy of the nodule under the tongue. The surgeon would not do a biopsy, instead Ron had another surgery on Monday, the 8th. When we went in, we thought there was just that one area, but once the surgeon was in there, he found another area on the side of Ron's tongue. Same side as the first time. So he sent a biopsy of each spot. We got the results today only from the tongue lesion and it was positive for SCC (AGAIN)! We will probably hear about the other site tomorrow. I want to thank all of you for your replies and thoughtful comments. I am thinking more and more that we need a second opinion on course of treatment from now on. I will let you know what else happens, and I wish all of you both with the disease and the caregivers around you the very best!
Thanks again,
Lori

Lori

Im sorry to hear the results werent good. When I started reading the latest update, it seemed like everything was ok. Im so sorry it wasnt good news. Seems like you do have competent doctors caring for your husband as they did procede with the biopsies and found SCC again. A second opinion is always a good idea. Wishing you and your husband the best of luck with this latest battle.

I am sorry Lori and Ron. You are in my prayers. Stay strong and positive.

Patty

Ron and Lori, My very best to you and yours through this hard time. It upsets me so when I hear of first case scenarios but when there is recurrence, I get plain mad at this stuff. Enough is enough already. The good part is, you have made it this far, you're not stopping now. Hang in there and lets trust this is the last time you have to hear those ugly words.

Keep us posted and be strong for one another. You will get there.

[quote=lorileona]However, the RO would not agree to start radiation of any kind until and unless he was SURE there was active cancer.[/quote]
Active? Or no active? In my case the nuking was after clear margins and was intended to get anything that might be lurking in the general area, a shot-gunning if you will, not a closely targeted spot remover.

Lets hope they can develop a Tx plan that gets it all this time.

My OCF Friends,
I am very low tonight. We met today with the oncologist. Both of Ron's biopsies came back positive, so this is his second recurrence within 4 months. His prognosis is not good. The Dr. said that without tx he would have 3 months. With tx, probably a year. He is starting Erbitux this week, and will stay on that indefinitely, as long as it's working. If it stops working, we move on to a clinical trial. He says that radiation would do no good at this point, since the cancer is widespread, and not localized. He has Perineural invasion, which I guess is like a scaffold effect for the cells to proliferate more quickly. Ron is, as ever, confident and ready to face it. I, on the other hand, am scared out of my mind. I know all of you have faced this with such grace, I just wish I could as well. I am not writing any of this on my blog, at least yet, because my "kids" read it, and I don't want them upset at my negative attitude. I just feel like I am going to lose my husband much too soon, and I don't know how to deal with that.
Lori

Lori,

I am so sorry for latest developments. You and your husband are in my thoughts. I was the co-caregiver of my brother David and we went through all of this. You have to have faith, I always think :you never know: we did not give up until the very end. It is a very difficult time for both of you, but stay strong.

I am thinking of you

Susan

First things first. You do NOT have a "negative attitude". How would ANY person feel when receiving the news you did and facing what lies in your path? You are doing great - handling it as well as any human could. And I only wish I had faced my trials with "grace" I don't feel like I faced them with any grace at all - I faced them with alot of help from my friends and family. I leaned on them, talked it out, dealt with and am dealing with my mortality issues - but none of it with grace. I think you are expecting far too much of yourself.

We are here to support you - to understand the fear you feel and will do anything we can to help you.

I have often wondered how long would be long enough for me. If I lived to be 70 would I want to live to 90, etc, etc. I know whenever it is that I move on, it will be far too soon, but I feel I will leave those I love to be with those I have loved. Whenever the fear grips my gut, I try to remember how blessed I have been. I got to be 54 - lots don't. I have family and friends and many other blessings in my life. Likely when it is my time, I will have had time to say whatever I needed to, to those I love. Those who have a heart attack never get a chance to say goodbye.

A very good (but short) book I read is called "Chasing Daylight". It is the story of a CEO who is given a terminal diagnosis and how he goes about dealing with it. I found it uplighting and insightful. He never spent alot of time with self pity. Worth the read.

You and your husband are in my prayers, and sorry if I sound "preachy" - just tryng to help.

Donna

Lori Donna is right you are being hard on yourself. You are just reacting. Give yourself some reaction time you are human and allow yourself to be. I can immagine myself being less than graceful in your situation. KNow that you do have a lot of support and some very broad shoulders here. We care,understand and are beside you. Like I have been told over and over and over again...you are not alone and never will be!!

Susan and Donna,
Thank you both so much. We are feeling much better tonight. We met with the surgeon today and he wants us to go back to St. Luke's in Milwaukee for Cyberknife therapy. He seems to think that Ron has more time left than the oncologist believes. And I have decided today that I will just keep thinking "one day at a time" like Ron does. Ron is to start the Erbitux this week, and if we can combine that with the Cyberknife, I will feel much better about his chances. Susan, I am so sorry you lost your brother, but I am glad that you remain here to help others. Your words were very much appreciated. Donna, I think you have a great deal of grace, and I will find that book for sure. You are so right about there never being enough time, and being thankful for all the days we do have. Thank you for reminding me of that. I truly AM thankful for the 24 years I have had with Ron, and look forward to many more.
Lori
Dianne, Thank you, too. It is so nice to come here and know that you have all either been through it yourselves or as caregivers. It means so much to talk to people who understand where you're coming from.

Last week was the week from hell. We were feeling much better after seeing Ron's first surgeon, and the possibility that he could have Cyberknife treatment. Well, that didn't last long. The following day we met with the Oncologist and he said that the tumor board recommended another "salvage surgery." (This is after he previously told us further surgery would not help!). We are now "sitting tight" (his words) on chemo!!! He does not believe that Cyberknife will work because the tumor is so large. It starts under the tongue and wraps around to the top of the tongue. He got us an appointment with the surgeon who did his Sept. surgery for tomorrow, the 22. Before we see him though, I had already made an appt. with an RO up at St. Luke's to talk about Cyberknife, so we are still going to go and at least ask about the possibility. My biggest fear now is that we are reaching the "quality vs. quantity" issue. I just can't imagine what the surgeon will remove this time. I mean, he could want to do a total glossectomy. I know that there are people here who have had that. Could I ask what is your quality of life? Can you still talk and eat? Ron said if he couldn't eat anymore, he would not want the surgery. I don't know what to think. Of course, I want him here as long as possible, but at what cost? We always talked about him going out still able to ride his Harley and that is what I want for him, too. I am feeling very hopeful about the Cyberknife, not so hopeful about the meeting with the surgeon tomorrow. I feel anger towards him anyway, from the last time. I still wonder if he had removed the tonsil that was affected and removed the entire mandible that HE KNEW had cancer in it (fibula was thrown away!), if this cancer would have recurred so quickly. I guess I'm just trying to find someone to blame for this mess! No one should have to go through this three times. Pete D., if you're reading this, I wish you the best on the 30th. Hang in there, and fight like a mule!
Lori

Lori, we all want reasons, answers and someone to blame - that is human nature. However, it is counterproductive to stay in that frame of mind ... so give it its moment and then move on ... I am so sorry your hubby (and you!) are having to face this again and I wish you the very best possible outcome. Nothing wrong with second or even third or fourth opinions if you feel someone else may have a better approach on it ... go with what you feel is what you want / need at the time ... I am sure this is a tough time but I hope you are able to have a happy holiday time together, letting this issue wait until Santa is back at the north pole to focus on too heavily. - all the best to you and yours -

Sorry you were both disappointed about the CyberKnife.

Lori, when I suspected this would be cancer again, I ran through the options as I saw them and concluded I would continue to lose body parts rather than surrender to the cancer. I was glad to find out that there was a step or two between now and losing my entire tongue and swallowing and tasting.

Life with a PEG is better than no life at all -- I know a family where the mother is deaf and has a hard time speaking -- There are plenty of people who can't walk and others who are blind -- Not being able to enjoy food is actually pretty easy compared to what they have -- Flexibility and adaptation are the keys to something like this.

If this were happening to David, I can see him biking up a storm with his hydration pack fixed to his PEG!

All I have to do is sleep through the part where I pay Dr Haakenslash and his Cutthroats to hack away and sew, then endure a night in the ICU (Intensely Comfort-Unfulfilled), then some good pharmaceuticals, then endure the physical therapists, then come home and recuperate, with my NetFlix subscription jacked up a little. It's still a lot easier than enduring radiation!

What we sometimes blurt out is not what we will decide when the time comes! Would you guys, singly or together, benefit from some therapy, either human or some anti-anxiety meds?

Rita and Pete,
We are planning on having a happy holiday season no matter what happens. We are going to drive down to MO. to see my sister and her family, and that is always fun and mayhem! I think it rejuvenates both of us and gets us out of cancer mode for a while. It also gives my sister lots of reasons to cook and try to fatten Ron up. Pete, I thank you for reminding me that things could always be worse and if Ron has to lose some more function as long as he is happy, it is worth doing. And yes, I am already on Xanax, especially for our stressful appointments. It really kind of keeps me in "secretary" mode instead of wife mode. I just make sure I write everything down and try not to react emotionally at that time. Ron doesn't need a thing! His attitude has never changed--he is always happy and ready and willing for whatever they want to do to him. It is me that has the problem. I am really trying to work on that, but it's hard at times, as I'm sure you know. Keep that sense of humor! You remind me a great deal of my husband. We have appointments on Monday and Tuesday of this week, then we are heading south to forget for a while! I wish all of you a wonderful holiday. Treasure those moments! Thank you all.
Lori

Lori,

I know it's tough right now but it is what it is and you both need to go into a fighting mode. Leave the sorrow behind and focus on beating this cancer anyway you can. At 56 he has plenty of years left and if he has to do without his tongue then that's way better than the alternative. I didn't have to have any surgery so it's easier said than done in my case but many others have done what he might have to have done and have been able to manage so please encourage him to talk to us or any support group that he feels comfortable with. I have seen many that opted not to continue treatment and none have survived so please continue fighting as long as their are options.

Oh, you people are like a (good) shot in the arm for me! Today we met with the RO up at St. Luke's and Ron IS a candidate for the Cyberknife. His best option is still a second salvage surgery, but if he decides he does not want the surgery, he can do 5 Cyberknife treatments and have about a 60% chance. The surgery would again be extensive (we met with the surgeon following the RO), this time his entire lower right quarter of his mouth would be removed and rebuilt, using hip bone this time. The surgeon also said that he would have to take at least half of his remaining tongue, which would leave him very little. There is the possibility that he could need a total glossectomy, but he won't know for sure until he gets in there. I think Ron is thinking hard about what he will accept. I know that he wants to live, he just needs to come to grips with what life may be like after surgery. I told him I am with him no matter what. I can handle taking care of a trach and a PEG tube, etc. None of that bothers me at all. I just want him here. Life will be different, but it will be LIFE and that is all that matters. Happy Holidays to all of you!
Lori

There are those on the board who have had total glossectomies and do just fine. I have only about 1/8 of my tongue left and I too am coping well.

You mentioned what the chances of success were for the cyberknife but you didn't say what was expected from the extensive surgery - success % wise, but I am sure you will consider all the options carefully. When is the planned surgery?

You're right - life changes and we adapt. We are here to help you cope with whatever adaptations you two might be making.

Donna

Just reading these posts made my day so much brighter. Have a great day all of you. Wisdom vs questions. very good.

Lori,
Enjoy your family time. I have been following your thread and am pleased to see that there is an upturn in Ron's treatment. May you continue to enjoy his great sense of humor for a long time. REmember: the doctors have permission to heal, not to predict.
Malka

Lori I hope that you remember me from September when Your husband and I had our surgeries on almost the same day. I also hope that you enjoy the holidays with your family. I pray for a brighter new year for you and Ron.

They removed 80% of my tongue in Sept and I am able to swallow. While there are things that are not possible for me to eat again, I am hopeful that I will be able to manage some foods in the future. For now I use the PEG and I am getting used to it. Once I have healed more I plan to try squash and other vegetables that I can mash, cooked apples with ice cream, and possible even some pasta depending on my swallowing abilities. I was surprised at how good pudding tasted!!!

At first I was really looking too much at what I could not do anymore and I am now focused on what I CAN do. I hope that this surgery goes well for Ron. You are a very strong person and I admire you very much. We are all pulling for you.

Patty

Another change of plans! I did get us an appointment up at UW-Madison for another opinion. We met with a very skilled ENT Surgeon last week and decided that he was exactly what we needed. Ron is having a second salvage surgery on February 2. We have been told that this is a "last-ditch" effort, but we are focusing on the future. This Surgeon's plan sounded much better to both of us. It will be a lengthy procedure, with a two week hospital stay. The tumor is too large for the Cyberknife treatments. He will have some type of chemo again after the surgery. We appreciate all of your good thoughts and comments. Lori

Lori,

You and Ron have been thru hell these last 7 months. I hope the salvage surgery is successful in February. Wanted to mention that I read an article in the Sacramento Bee over a year ago about a man who is in his 60's with SCC who had to have most of his tongue removed...was not able to talk or eat(by mouth) anymore. He became a gourmet chef and prepares these wonderful meals for his wife, altho he can't partake in them. It was a story about their enduring love and the changes and challenges in their life that the cancer had caused. My sister use to say she would not have more surgeries or have the radiation and chemo treatments, but when it came down to dying or going thru with the TX, she chose to live. Like your husband, the will to live is strong, he has a family who loves him and he loves, everyone adjusts to the changes that this evil cancer causes. Ron sounds like a real positive person who has the strength to deal with whatever limitations come his way.

My best to all of you,

Nancy

Lori...good news about the new plans for surgery. Having a plan and marching forward is so important when fighting this disease. I wish you both all the best as you face many difficult days ahead of you. I agree with Nancy - when it comes right down to it - you do what you have to do to live. And tell Ron that we know he can get through any thing - just keep his eyes closed!

Donna

Lori

Lots of positive thoughts and prayers being sent your way. Ron is a strong man and will come through this I am sure.

Patty

Best of luck and lots of positive thoughts sent your way for the upcoming surgery.
-Steve

Lori

Sorry to hear everything your husband has been thru lately. Your plan sounds very well thought out. Will say lots of prayers for both of you.

Hello all,
Long time no write. Ron's surgery was on Feb. 2 at UW-Madison. He was just released last Wednesday, the 18th. Nine days into the hospitalization he had to go back to surgery due to an infection and ended up losing his new metal jaw, along with quite a bit of the scapular flap tissue. His jaw will not be rebuilt. He is now doing well with a trach and PEG. Swallow study will be in a few weeks. Many good things have happened also. He still has some tongue left and all of the nodes that looked "funky" came back negative! We are hanging in there, and getting used to our new schedule. One very nice and surprising thing happened. The day of the surgery I was sitting in the surgical waiting area with my family, and a woman came up to me and said "Are you Lori?", I said yes, and it was DEJ from this website! She lives in Madison, her husband had Ron's doctor also, and she just came to say hello and give her support. That is this website in a nutshell. I hope someday I can be there for someone else. It was so kind of her to make a special trip just to let me know that she was thinking of us. Love the OCF!
Lori

Lori,

What wonderful and thoughtful thing to happen for both you and Ron.

Sorry to hear about the jaw and the infection, but the negative nodes are definitely something to celebrate. Having some tongue will help Ron with foods. He will be able to move the around in his mouth which will make swallowing easier for him.

I hope that both of you will rest and relax now that you are home and let us know how the swallow study goes. Glad that you are back with us, I have thought of you both so often.

Patty

Hi Lori,
I'm glad that you and Ron are home and that you had good news about the nodes. It must be a relief to be out of the hospital and back to your familiar surroundings. Please keep us posted about how you both are doing and any follow-ups for Ron. Pretty soon it will be Spring and that should lift all our spirits.... Geri

Lori

Glad to hear the good news about the nodes. Please keep giving updates, we are all here for you both. What a lovely jesture from DEJ to visit you at the hospital. OCF really is like a big family. I have met several members and every single one is very special to me.

Best of luck to Ron with the recovery, hope he is feeling ok by now.

When my doctor was describing to me just what I was in store for they explained that in replacing the bone with the fibula free flap that the surgery time would be 12 hours due to the need for the trac placement, the PEG placement first then the removal of the teeth, tumor and bone while Dr. Halvorson "harvested" the bone from the femur. It is strage that even working in the medical field did not prepare me for what I truly faced. It was explained to me that in doing this surgery I would have a "dimple" in my chim (she did not describe the scarring I would have to my neck and that in cutting they may cut through the nerve which when I stuck out my tongue it would hang sideways...kinda like a dog when he is panting. I joke with my family and friends about how it could have been but I was very lucky. The entire surgery took 12 hours and I was in ICU for 4 days because of a fever or 103. I have pictures of me in the ICU for I wanted to see each and every stage. I had my surgery on 3/13/08, came out into the private room on Monday, had my trach changed out and size reduced on Tuesday. By Thursday-one week post op- my trac was removed. On Friday I was released from the hopital and walked from my room to the elevator and out the door of the hospital (approximately 100 yards total) and was home from Chapel Hill the next day after staying over a night in the motel. I did not find out how much of my tissue in my mouth had been removed until a few weeks later. I don't know what I ws thinking when I found out I had hair growing inside my mouth. I tell people that the only thing that scares me is that when I get old and in a nursing home people will think I am a werewolf. The tube feedings were not sufficent for me so I asked my home town doctor if I oculd put some other food down my tube. I would send my husband out for oyster stew, strain it, put a little milk in it and use it as a supplement, I was allowed to put some Sprite and very thin chicken soup down the tube and even tea and Coca Cola which would prevent the tube from clogging. I think they realized when I was showering and washing my hair while I still had the trach in thatI was determined not to let this horrid disease get the better of me. By April 15 I was allowed to eat soft foods but not thin liquids. I began with creamed potatoes, yams pudding and anything I could think of. The only problems I had were getting a small area of the incision on my right leg to heal. By May 5th I was back to work on the 11-7 shift with no restrictions. Even though the tumor was 2 X 3 cms---I think, I will have to go back to the report--and I had one node test positive, the tumor board felt I did not have to have radiation or chemo for which I am truly grateful. The pitfalls of not having teeth did not stop me from gaining 30 pounds after surgery . I am now walking 120 mnutes a day and trying to take off the excess pounds. Think positive as I did. I will never forget the fear I felt when they expalined the need for the trach and PEG. I was able to remove the PEG myself on May 15th. I still have to see my oncologist but have not seen the plastic surgeon since last August. He did a magnificent job with what he had to work with. Good luck and as I said with his positive attitude he sounds a lot like me.