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New Member #199813
02-17-2020 04:44 AM
02-17-2020 04:44 AM
Joined: Feb 2020
Posts: 4
Yorba Linda, CA
C
CynthiaD Offline OP
Member
CynthiaD  Offline OP
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Joined: Feb 2020
Posts: 4
Yorba Linda, CA
Hello everyone. I joined because my long-time partner (> 30 years) is in treatment for oral cancer. I don't know all the abbreviations, etc. but I'll describe his situation.

His name is Hank. He is 76 years old; I'm 71. In October he went for his yearly dental visit, and complained that he had a sore on his upper gum that was not healing. The dentist, for unknown reasons, thought he might have an abscess on his tooth and referred him to an endodontist. It took a month to get seen (!!). The endodontist tested his tooth and did not find any problems, but referred him to an ENT for a biopsy. The biopsy showed he had squamous cell cancer. He has never smoked a cigarette in his life, but he did have chronic gingivitis, which I have heard is a risk factor.

To make a long story short, he had surgery on Jan. 30 and is in recovery now. They removed a good portion of the upper left roof of his mouth, including 4 teeth. To close the hole, they grafted some tissue from his leg. They also removed all the lymph nodes in his neck on the left side. The lymph nodes showed no signs of cancer, but the tissue removed from the mouth showed that the cancer had spread to the bone, so it was classified as Stage IV.

Currently, he is at home -- he's been out of the hospital for a little more than a week. Damn, it amazes me to write that, as it seems more like a year! He is on soft foods. His mouth is swollen, of course, but the swelling goes down a little every day. The worst part right now is the graft, which hangs down in his mouth and makes it hard to understand him, and makes it harder for him to swallow. Supposedly it too will shrink down somewhat.

A complication is that he has type 2 diabetes, which means he should not have too many carbs. Unfortunately, it's hard to find soft foods that have low carbs! Right now he is pureeing veggies in the blender and he got some pre-cooked bacon that he can heat up in the microwave, I am getting him baby meat, and he is experimenting with pureeing chicken. We'll see how that goes. I am worried because he seems to be losing weight. He's lost about 10 pounds since he went in the hospital. He is not overweight; he's 5'11" and 154 pounds right now. So I'm constantly trying to figure out how to get him the calories he needs.

The surgeon (at UCI Medical, a very good hospital) is recommending he have 6 weeks of radiation treatment because of the stage IV. He is terrified of this and doesn't know if he wants to have it.

Anyway, that's about it. That's where we are. I am joining this forum because I feel like I just feel so alone with this. I can see this is going to be a long struggle. I am happy that there is such a forum!

Re: New Member [Re: CynthiaD] #199815
02-17-2020 06:56 AM
02-17-2020 06:56 AM
Joined: Dec 2019
Posts: 19
J
Janey Offline
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Janey  Offline
Member
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Joined: Dec 2019
Posts: 19
I'm just a new member, so I don't k ow a lot.

However, I'm sending you and Hank good vibes.

Re: New Member [Re: Janey] #199817
02-17-2020 07:30 AM
02-17-2020 07:30 AM
Joined: Feb 2020
Posts: 4
Yorba Linda, CA
C
CynthiaD Offline OP
Member
CynthiaD  Offline OP
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Joined: Feb 2020
Posts: 4
Yorba Linda, CA
Thank you Janey!

Re: New Member [Re: CynthiaD] #199819
02-17-2020 11:14 AM
02-17-2020 11:14 AM
Joined: Aug 2019
Posts: 16
M
MST Offline
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MST  Offline
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Joined: Aug 2019
Posts: 16
Hi Cynthia,

Sounds like I had nearly the same operation as Hank. My cancer grew from a peridontal infection where I had the tooth pulled but the wound never healed. I had a partial maxillectomy with a free flap graft from my right thigh. My lymph nodes were not removed.

I ended up on a feeding tube - nasogastric- for 39 days as my flap came loose and had to reconnect to the roof of my mouth, which it thankfully did.

My speech was garbled for nearly two months post-op, but now my wife and family say I speak perfectly. To me it still sounds off and I did test it using a voice recorder and it sounded notmal to me on replay! So, his speech should improve. My graft has shrunk.

It sounds like Hank is doing great. I did 6 weeks of radiation which I will be honest with you was not easy, though not insurmountable. Radiation altered my taste buds, which are slowly coming back to normal 4 weeks 5 days post radiation. My saliva turned to the consistency of molasses, and that has yet to improve. My mouth is dry, and the facial hair that was exposed to radiation was burned away- half a beard and half a mustache.

It is difficult to eat anything but soft or pureed foods without normal saliva.

I have trismus which is a daily struggle. As yet lymphadema has been rather mild though I keep up with my daily exercises.

During radiation I was nauseaous most of the time and the smell of food was abhorrent to me. I lived on liquid meal replacements and lost 20 lbs. If Hank does radiation he needs to fatten up as much as possible.

The best to you both


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