Hello Everyone,

I joined the site when I was diagnosed with SSC in August, following 8 months of being told by various health professionals that I did not have cancer, but a chronic infection. Since I live on a small island overseas, it was necessary for me to hurriedly bring my wife and kids with me to the mainland US, leaving behind our lives for now. That itself has been extremely taxing, particularly for my wife who has been an absolute rock. We have been able to stay with some family in-between hotels and rentals, but the cost of getting sick is enormous.

The 'abscess' in my cheek was in fact a tumor, subsequently diagnosed as T4 N0 M0. A PET confirmed no metastasis, and I had the tumor excised on October 1. The surgery (11 hours) included a partial maxillectomy with a free-flap inserted to fill the void.

I am currently recovering, with post-op visits to plastics, surgeon, and a new speech pathology visit over the next several days.

The surgeon indicated that radiation and low dose chemo were next for me, administered over a 6 week period, once I am recovered from the surgery.

Aside from the surgical area and flap donor site soreness I feel pretty good, although am on a feeding tube (nose) which will hopefully be taken out in the next week.

At this point I feel sort of odd, recovering from the surgery in preparation to be knocked to my knees again by the radiation and chemo.

I was an otherwise healthy individual, so was not compromised as such any in other way.

I am hopeful, in a guarded sense,

More questions will be on the way, especially after my upcoming appointments.

Wishing you all the best!

Hey MST,

Sorry to hear about your diagnosis, but welcome to the site. Feel free to aak many questions. We're all happy to share our experiences.
I love your positivity and attitude. It helps keep you going.

Looking forward to seeing your updates.

Hugs
Dizz

Well, I failed a swallow test as my flap is leaking into the buccal space, so I am on the feeding tube for two + more weeks. I hope it heals as I do not want to go to the OR again. I have lost 14 pounds since surgery. I am maxing the liquid feeds as much as I can tolerate. Does anyone have insight on how to up calories through the tube?

I also developed an infection in incisions area where the blood vessels were harvested for the flap. I woke up yesterday and it was oozing pus, so off to the Clinic I went. On antibiotics. The PA said it was connected to the flap leak into the buccal space.

Setbacks.

MST,

I wish you the best recovering!

I’m the champ of wright gain lol, and unintentional weight loss too. I believe if your body weight was higher before it would be easier to gain back. Even still, it’s possible. To help motivate my earring, watched all the cooking shows, read food magazines, and books! After that I was usually ready to bite into something. Even if you’re starting at 0, you can increase your intake and type of food slowly. I started off with just putting something in your mouth and spitting it out to slowly eating eggs , farina etc.

Exercise increases your appetite!.

There are vitamins and prescription medications to help you gain weight, and increase your appetite. I went from 120lbs to 200lbs in several years, but due to my kidneys my nephrologist said not to gain anymore. I’m back down to 160 though illness. My original weight before cancer was 250 averaging.

See your doctor before starting anything new. Good luck!

I passed my barium swallow test and finally got my feeding tube out today! What a relief.

I got home, was hungry so decided to drink a box of the formula I was sending down the tube. All I can say is that it tastes much better going down the tube...

Congrats on losing your feeding tube!

I’m sure many will agree with your observation about the formulas. My husband absolutely refused to drink it unless I put in other stuff to improve its taste.