Hey everyone, this is my first post and I am in the midst of treatment for my cancer and have been reading from this forum for a while now and thought I should finally sign up and post. First I want to thank everyone for the vast amount of information on here as it has helped me greatly in hearing about people who have gone through similar situations.

I will try to break down the last few months quickly to give my story. I was diagnosed with SCC inside my cheek in Sept. and had scans done that confirmed cancer also in the left jawbone and possible nodes on left side. On November 12th, I had surgery which was the partial mandibulectomy with fibula flap and neck dissection. I had and still have a PEG, had the trach for about 8 days and spent 10 days in the hospital. I had a bit of bad luck after all that. one of the margins ended up showing cancer cells on the back cut of the jawbone, also the hospital "lost" 28 of the 30 lymph nodes that were taken out. The 2 nodes that made it to pathology came back negative, but with the bad margin and lost nodes I will be starting chemo and radiation soon. Healing is slow and has its ups and downs as everyone knows. I ended up with a fistula infection that took a few weeks of draining out of the neck to clear up and now has been causing swelling in the neck due to buildup. I am still really swollen in the jaw and I can't open the jaw much but am eating semi soft foods pretty well, just takes a lot of time. My leg is healing from the fibula flap and I am able to walk slowly. The skin graft is taking its sweet time to fully heal. The main drawback to having leg function is the skin graft and very limited ankle movement but it is all getting better little by little. I am set to start 7 weeks of radiation on Jan. 5th and chemo starts on the 6th. The chemo will be cisplatin every three weeks split between 2 days each time. I am just bracing myself for the side effects I've heard all about. I already have a lot of dry mouth and the left side of my tongue is very sore and sensitive which I am hoping is just from the irritation of the new jaw and dry mouth and not spreading cancer.
Again, I am very grateful for everyones posts on their situations and reading the stories. I know this is a long hard road and I hope to be around for long time to come.

Hi Jeff. You have indeed had a run of bad luck. I've never heard of nodes being lost before. I suppose the treatment would have been the same though with the lack of a clear margin on part of the bone.
It seems to me to be a good sign that you're eating okay.

I can sympathize with the slow healing of the skin donor site. It seems to be one step forward and two back with that one. But one day it will a piece of baby pink skin.

Rads and chemo are challenging but you will be well looked after, will get into a routine and wonder where the weeks have gone. When you are actually IN that tunnel you just put your head down and keep going. Staff in those centres are well trained to look after the needs of RT patients. You can develop such a good relationship with them that it blunts the sharp edges of the treatment and side effects.

Best wishes

Hi Jeff

It sounds like all is going well and you are healing . Its a slow process but you should start to feel better soon.

I'm responding because it sounds like your cancer is very simular to my mothers. My mother was diagnosed with SCC in the lower left jaw. She had surgery "Mandibulectomy" but the doctor left a piece of her jaw bone in the rear of her jaw. My understanding was to avoid having to do fibular flap. So a piece of her jaw bone was left in. The pathology report indacated the piece that was left in was questionable but the sergeon said he frooze it and all should be ok. After healing for a few weeks 35 Radiation treatments were done. The radiation my mother tolerated well. Towards the end of treatments she had sid effects.
My mother has also taken the Cisplatin. I cant say anything good about this treatment. My mother took the Cisplatin 3 weeks apart also. She was only able to tolerate 2 rounds. The side effects were really bad on my mother. But everyone is different. You may do well.

My mother did have a recurrence which the cancer is in her neck also and at this point we are going to a comprehensive Cancer Center for a second opinion and hopefully different treatment.

Manuca Honey really works well in healing the surgery fast. You can buy it at a Whole food store. Rub it inside your mouth on your toungh and all over your surgery. It works remarkable well.

Get yourself ready for these upcoming treatments. Try to eat as much as you can . Build youself up now to try and avoid to much weight loss.


If I can help in any way feel free to message me.
Heidi

Welcome to OCF, Jeff! You have been thru alot! A mandibulectomy is no easy road! Ive had it done as well. Recovery can take a long time after that major surgery. Hopefully, being young should help make things a little easier.

Rads is no walk in the park. I havent heard of splitting the chemo over 2 days before. Maybe that will make it easier to tolerate??? I hope so! Focus on your intake as much as you can to meet the daily minimums of 2500+ calories and 48-64 oz of water. This will help you get thru it easier.

If you are in pain talk with your physician about getting some strong pain meds to help. I remember when I was first recovering, the pain was so bad it would literately stop me dead in my tracks mid sentence. I found relief with neurontin. It works very well with nerve pain. Maybe that would help you too.

Im glad you found our site. We will help you get thru your upcoming treatments and recovery. Best wishes!

Thank you everyone for your replies. I will be keeping all ideas and suggestions in mind. It is good to have a place to go to for support when needed.

Hey Jeff,
We are starting chemo and rads at the same time. I can't offer you a lot of advice but I can offer support as we go through the treatments. I will be having weekly cisplatin and rads M-F for 7 weeks.

Lost nodes? That would worry me.


We've got the weekend to enjoy!

Jeff,

Thanks for introducing yourself. Even though I do not post much, I still read the introductions. So sad that the hospital lost your lab results. I am sorry you are having to do radiation and chemo. I also had cancer in the margins after surgery, but "only" had radiation and not chemo.

I am 2 years past radiation, and still dealing with Trismus, although things are much better than they were. I remember the days of not being able to eat, the sores, and not being able to taste food. Things will get better. Stay strong. Remember to stretch open your mouth as much as possible during and after radation to help prevent or reduce Trismus.

My life, two years past surgery and radiaton is a little different, but I am very happy and very blessed. Just stay tough during the radiation and chemo. Best Wishes!

Thank you QueenKong, I hope your treatment goes smoothly.

Thank you Eric. I am expecting to have some trismus as well as a lot of the radiation will be directed at the back of the jaw area. I am still dealing with it from surgery and stretching it as much as possible. Best wishes and I'm glad to hear you're doing well and happy.

If your docs and nurses have not given you the wooden tongue bade exercises to do, please post that here and I will tell you about what saved my ability to open my mouth completely after the maximum radiation doses before the advent of IMRT. It's cheap and simple.