Hi am back to posting after more than six years. Thaat is how long my husband lived as a cancer survivor until last month. He was diagnosed with cancer ot the right tonsil in 2002. Last month he was diagnosed with cancer of the tongue and jaw. The pain has been intense and was first thought to be a dental problem. His teeth have been a mess since his radiation. Well long story short he had a biopsy and now he is scheduled for surgery on December 24 and two weeks in the hospital. This forum was so helpful last time and I hope to find some friends to with whom to share my experience. Best of luch to all of you who are in treatment and their caregivers. elem

What kind of surgery will your husband have? Mine had half of his lower right jaw removed and replaced with bone from his left calf. He also had about 1/3 of his tongue removed as well as the floor of his mouth. I'm sure they will biopsy his lymph nodes as well. Has he had a PET scan yet? Six years is quite a long time to have been clear-that's wonderful.

Sue

I wish our welcome back were for congratulations on six years clear, rather than this new diagnosis, but the welcome is here just the same.

I imagine there are some changes/improvements to treatments and maybe the handling of some after-effects in that six years that you are as yet unaware of. I'm sure the people here will be able to catch you up on all of them.

I'm sorry to say welcome back,

Lani

So sorry you are looking at more of this. My husband is just under 6 years post treatment, so I can really empathize with how you must feel. Keep us posted with how you are both doing.

Best,
Anita

So sorry that you are back, but happy that you found the people at this site supportive enough to come back to. I am recovering from surgery due to cancer of the tongue and left jaw which recurred after surgery/treatment for floor of mouth cancer. I sympathize with your husband about the pain. It was horrific. I could not eat, drink or at times even talk due to the pain.
I hope that his surgery goes well.

my wish for your husband is that this round is the last, that it is beaten quickly and that treatment is better than last time. going thru it once is bad enough ... twice should be against the law. i am sorry to hear of your husband's recurrence and my thoughts are with you. having surgery the day before christmas is not fair either ... but i guess this disease doesn't know what fair is or means.

First off really sorry for the re occurrence. You said that your husband's teeth had been a mess since radiation. What type of rad did he receive? And did he use the fluoride daily since treatment? Have his doctors given you their reason why it might have come back? What are they suggesting treatment wise now?

Thanks to all of you who welcomed me back. Can someone share with me how they did after tongue and jaw surgery? How is the talking and eating? The doctor said he might not replace jawboe to make swallowing easier. How long is the recovery? My husband cannot have any more radiation and chemo is not an option. He will also have lymph nodes removed same as last time. First time was on the right side this time left side. Her was told he would need speech therapy. Elem

Elem,

I'd like to try to answer you, but I'm a little unclear. Is it that the Dr says swallowing will be easier if he DOESN'T replace the jawbone? How much and what part of the jawbone will be removed?

I've had most of my tongue removed, but I still have most of my jaw. It was more like they just shaved the top off of it.

Lani

Lani

I had my free flap (no bones involved) done in June and just started really eating in November -- The recovery took longer than I thought it would -- My throat is still somewhat constricted.

It strikes me as strange that I hired this guy with a sharp knife and his band of cutthroats to knock me out, hack off a large part of my tongue, slit my throat, hack a big chunk off my wrist and sew that into my mouth!! It seemed like such a good idea at the time....

Pete,

Have you ever had your throat dilated?

I'm not sure exactly when it started, but my throat completely closed up last March, 17 months post Tx. I mean completely - no water, mashed potatoes, pudding, or ice cream - absolutely nothing. It all tried to go up into my nose or down into my lungs. I was admitted into the hospital, and that's when I met my gastroenterlogist. He dilated my throat and I was able to swallow that evening.

He said that the throat constriction can first start as long as 2 years post rad. He couldn't dilate me all the way in one shot because it was SO constricted (didn't want to tear it), so I had it done twice more, each a few weeks apart, until it was of "normal" size.

I was having trouble swallowing again lately, so I just had my esophogus dilated again (4th time) and again Blessed relief. It doesn't solve all my eating problems, because I still have tongue stub, dry mouth, and no teeth issues, but the difference is incredible.

It's no problem to have done, either. Mine is done in the Doc's office under anesthesia. Go to sleep, wake up, It's done. And that night you're swallowing like a champ. There is no sore throat or anything either. You feel just fine.

Lani

Lani, I've been considering doing just that, although I didn't realize the Gastro-Doc does the work -- Did you do a self-referral or was it done by your cancer Doc?

Pete,

I was admitted into the hospital because I couldn't swallow anything at all and needed to be fed and hydrated by IV. He just showed up at my bedside the next day, so I guess the hospital Doc-in-charge called him in.

Since then, my disability Medicare became effective. I chose Humana Gold (with Medicare) to manage my health care, so since then it's a referral from my Primary Care Provider - everything's supposed to go through her now.

That hasn't been a problem for me because she's very easy to get along with and doesn't question anything I need. Before I signed with Humana I made sure that they would have no problem with all cancer-related issues going through Shands too. That was a deal-breaker for me, and so far,so good.

I don't know, but probably ENTs would also do the procedure. Check with your PCP, or your cancer Doc should be able to help out, too, if you need a referral. Maybe you could just call on your own, though, if your insurance allows it. Gastroenterologists take care of the whole "gastro" thing top to bottom - esophogus, stomach, and on to that colonoscopy we're all supposed to get. (So if you go in to have your esophogus dilated, don't let them tell you to strip from the waist down.)

Do this. I promise you'll be thrilled with the results.

Lani

I have a call in to the nurse practitioner on my cancer team (Along with Dr Haakenslash and the Cutthroats; good name for the OCF official rock band!) to see. Rather get it done on this side of Puget Sound as it's more convenient for me.

This is a banner year for me, what with two CT, one PET and one MRI, cancer surgery, colonoscopy and enlarged prostate treatment later this month (I am pushing the extra stuf because I have already met my out-of-pocket for this year!). Might as well have my throat messed with on the inside as well as the outside...

Pete,

Well since you already had the colonoscopy, you'll get the throat done and you'll be clean & clear, through and through.

Lani

Yeah Pete, get the whole tuneup and be done with it.

I also had the PEG in and out about five times (once by Doc and the others by me), so even the middle of my system has been affected. Even had a couple of fillings done this week at gum line!

Pete...I love you comment. It made me laugh out loud. It does seem like a good idea at the time doesn't it?

Elem,

I wish your husband luck on his surgery. Let us know how it goes.

Suzanne

My husband has also decided to give up the fight after nine years and many surgeries and hospitalizations. He has fought with radiation and chemo. He has had a total glossectomy, he has a trach and can not speak. He has a feeding tube and now has difficulty hearing. He just wants to be comfortable and surrounded by his loved ones. Hospice has been wonderful and I feel we have made the right choice for us. It may not be right for everyone. He is resting comfortably in a hospital bed in our living room and not spending his days being prodded and poked.

It is a personal choice and no judgements should be made. No one said this was an easy choice. Watching my husband decline everyday is the hardest thing I have ever done. I was a nurse for 20 years working in Nursing Homes and I have seen families in pain no matter what final decisions they made.

I loved reading Pete D's posts WHEN HE WAS ALIVE and while you obviously mean well, resurrecting a three year old thread with his posts makes me hope that Brian locks down the old posts ASAP. This seems to be a new trend here that I hope does not catch on

Charm,

I agree with Brian's suggestion to lock down "old posts". Lani G also passed away a few months after she posted these comments.

An OCF newcomer may not notice the date of the post and certainly won't know that some of the OCF members who participated in this discussion are no longer with us.

It is sad to read the comments of those we knew who are no longer here. Gone, but not forgotten. May they rest in peace!

I take full responsibility for resurrecting this thread! Remember I am still learning!

Im sorry if it upset anyone seeing posts by Pete, Lani and Good1 (Patty). May all three of them rest in peace!

The recent posts were originally written in the middle of a thread that had become a war zone. This member had no signature and it has been years since their last post. This makes it impossible for regular members to know this persons history. I felt the most sensible place for the 2 new posts would be with this thread.

Mackay, I sent you PMs with the above info. Im sorry if I caused you any inconvience.