John,

My treatments(s) had a more unusual path, circumstances, than most, like yourself. I had two peg tubes, the first was without my knowledge when in ICU losing over 110 pounds from cancer cachexia, and only on IV for several months. Then when I was finally released 6 months later, I had it removed after a clear PET/CT, which everyone was amazed with no further treatment other then chemo 8 months earlier. But I had a recurrence a month or two later, and already had compromised swallowing, and trismus, that a Peg tube was recommended for radiation. My oncologist said would not be able to tolerate chemo. I kept it for four years though 10 more radiation, chemo and surgeries, some were tube dependent, and I finally had it taken out or say yanked out, two weeks ago, approved by my doctors, SLP, after I was free of cancer for a year as I have had persistent cancer the past 5 years,10 months.

I tell you this to never lose hope or give up. The body is amazing in it's recovery, and was about to write myself off several times, but after waking up each day, but that's only half the story, I had some hope, and basically able to eat most foods now with a mechanical soft diet, due to no teeth, otherwise I would be eating pizza, but I whip up all kind if foods I can eat, and enjoy.

Best wishes!

Im so sorry that you are facing further treatment for MC. It certainly sounds like you have had your share of ups and downs. Im very sorry you are struggling with this mentally. We are always here to listen. We understand what you are facing, we have been thru similar things ourselves. Im glad you are seeing a therapist. Its very common for OC patients (and even many caregivers too) to have a need for a therapist, maybe even anxiety meds. Its a traumatic experience being diagnosed with a serious illness. That event is something not one of us will ever forget.

I understand exactly how you feel. After 3 rounds of OC, Im now disfigured and using a feeding tube for life. I have quite a few really bad days where Im so sick I can barely walk or talk. This usually ends with a trip to the ER. Being disfigured in a society where everyone focuses on appearances, being a woman who is missing half her lower jaw sticks out like a sore thumb. Ive handled this very well and after 6 years I have a productive, happy life.

If I can overcome my obstacles, I have faith you can get past this too. Try your very best to focus only on things within your control and avoid the "what if's" like the plague. Staying very busy will help keep your mind tied up which keeps you from worrying too much. Nobody needs any extra anxiety, especially when facing an upcoming major surgery.

Hang in there!!! We are all in this together. You can lean on us to help get you thru what you are facing.


PS... Ive sent you directions on how to add your signature. Click in the tiny flashing envelope next to the My Stuff tab which is near the middle of the top of the page.

Thanks Paul,
I just wonder if I can be as strong as you and some of the other people that are on this forum.
The problem with my swallowing is that I had to have more than half my tongue removed and the tongue is so important to swallowing. Combine this with my 70 gray radiation. I have some signs of aspiration on my chest CT.

You're stronger then you already know, and if I could have ran away, I would have! Don't think I'm strong or positive, I'm more realistic, and I say just get me through however which way I can, even if it's cursing and kicking along the way. My oncologist once told me, it's not a matter of what has happened or can happen that matters, but being able to pull through when it does, that matters most, and did.

Concentrate on yourslf, and moment, although helping others has helped me, in addition too, educating myself to this disease. I had oropharyngeal cancer in the tonsil, somewhat different than oral, had 70Gy bilateral radiation once, ipsilateral 4x totaling over 192Gy to the same area in my neck, aspirational pneumonia several times. was on a respirator too, and all cleared up. It's not something to ingnore either, and listen to your doctors.

Thanks Paul,
I will keep in touch. I am fortunate in that I have a wonderful wife and family as well as friends that care. Sometimes I keep going because of them.

I just got back from M. D. Anderson and it looks like I am having surgery to take out all the lymph nodes on the left side. They will then do a flap to cover the area operated on with a flap from the chest. In addition, I am having a msndibulectomy on the right side to remove all the dead bone that has occurred from the radiation I received. I have also now developed a malocclusion that cannot be fixed because putting in a fibula flap would be too difficult due, probably, to the fact that I already have a flap there that replaced half my tongue. I am still working on my swallowing but I have developed some ground glass opacities seen on the CT of yhe chest. I have not developed aspiration pneumonia. The surgery will be about four to five hours. I am still working on my swallowing, but I am scared that I will not be able to get rid of the feeding tube. This is a big quality of life issue for me, since I enjoy going out to dinner with my wife and travel that we do. I wanted to keep everyone informed and get some advice from all.

Also, I am not sure how to update the info that everyone has describing the individual's condition and the treatments and responses to treatment they have received. This is the abbreviations and info on the bottom.

Im sorry you have to go thru such a major surgery. Ive had a mandibulectomy (thats one word I never wanted to know how to spell much less pronounce) in 2009. Its a big surgery, mine was 10+ hours. Its not easy but I have faith if I can get thru it you can too. Expect to stay in the hospital for at least 1 or 2 weeks. Recovery with this type of very involved surgery can be a long road. Make sure your doctor writes prescriptions for 2 different pain meds while you are hospitalized. This way you can alternate between them instead of having to wait for the right time to take your next dose. I had significant pain when I had my mandibulectomy, lots of stitches, staples and skin graphs all had me feeling like I was run over by a truck (and it backed up and hit me again and again). In some ways, your mandibulectomy doesnt sound as involved as mine was so hopefully you wont be hurting too much.

As far as eating goes, that is very individualized. Some patients cant ever eat properly after surgery or radiation while others have been thru OC multiple times with some major impacting treatments can manage fairly well. To me, I feel the eating ability also takes some determination which you have. I hope after your recovery you will be able to enjoy dinners out with your wife again. The most important thing is to eliminate the cancer, after that everything else will fall into place. Collateral damage can wreck havoc on a survivor but in time everything is manageable.

Wishing you all the very best with everything.


PS...Check your private messages. Ive resent the link to the thread that teaches you how to make a signature and navigate the forum.

Thanks Christine (I think),
Was your mandibulectomy combined with a free flap reconstruction? They do not plan on reconstruction. I imagine that is because I have had a free flap reconstruction there for my hemiglossectomy. The plastic surgeon-Dr. Garvey from M. D. Anderson thinks that would be too "heroic" and that the downside risks are too great and would leave me with an inability to open my mouth hardly at all. Have you come across anyone who has had a mandibulectomy such as mine without free flap reconstruction? What they want to do is to cut out only the dead bone and stop when the bone is healthy. It is being represented that this is to be to about the corner of the mouth, although they are not sure. I only have the OR for about 5 hours and that includes a left side selective dissection to get rid of the nodes in my left neck. That will be accompanied by intraoperative radiation treatment and two weeks later 23 radiation treatments measuring 46 gray. One year ago, I had 70 gray directed at the tumor and lymph nodes that were on the right
side. Thanks for your advice and I will update my history soon.

JPT68, luckily for me my tongue was not involved in my surgery, it was primarily my L jaw. I did have tissue moved from my wrist to my jaw area.

As you will notice, every patient/survivor here is slightly different. No two situations are exactly alike, everyone's case is unique which makes it very difficult to compare. The doctor can always tweak your surgery down the road if any reconstruction would be needed. I understand the apprehension with the upcoming surgery. Its scary going into this unknown territory. Do your best to stay busy to keep from worrying too much. As much as you can focus on whats controllable in your life and avoid the "what if's" at any cost.

Best wishes!


PS... Im looking forward to seeing your signature. I had forgotten about your previous rads when I replied yesterday.