Michelle, from a planning standpoint, you should be ready for things to move pretty quickly from now on. The rad Doc and the Chemo Doc will work out the schedule for both of those things. Radiation will most likely be at least once a day, 5 days a week, and the chemo schedule will depend on what they are giving him. I'm glad to hear your brother has you for support. Amy in the Ozarks

Update on my brother so far.

Yesterday the ENT put him to sleep to explore more. My sister took him and this is what I found out. He placed the peg tube and said he only see's the cancer on his tongue and in one lymph node. The cat scan said 3 lymph nodes enlarged. So I don't understand what he means by one lymph node. How he can tell by looking. He also took more biopsys. He's saying stage 4 based on size. We go this thurs to oncologist and friday to radiation dr. We will then find out the plan then. I know he has to get fitted for the mask and does anyone know how soon after that do they start treatment???
The dr. did say that it looks like he has had this for sometime and it started on tongue and bored out, is how he put it.
The path report stated invasive moderately differentiated squamous cell carcinoma.
The dr. did say he had greater that 50% chance of beating this.
Since he had peg yesterday his stomach is sore and he didn't feel like eating much today.
He is on percocet for now.
He will see the ENT who put the peg in on thursday. So we haven't gotten anything set up yet to start tube feeds yet. I don't know which dr. orders that???
He is drinking boost and the carnation 560cal cans and liquids. He's having trouble swallowing
most foods.
Thanks David for the info on the carnation drinks. This is going to be a big help for him.

I am so ready to help him start the fight and get him through this. Very overwhelming at times.
He is very scared and very down and quiet.

Any help would be greatly appreciated.
I continued to pray for all of you every day.

Michelle

HI, Michelle, Glad to hear your brother got the peg as that will probably make it easier for him [and caregivers] to get the calories and liquids he needs. When you get a report [the lymph node stuff] that you don't understand- ASK for clarification and write it down so that you understand what is being said. When his radiation starts, there will no doubt be some questions we can help with? Is chemo still part of the plan? The fact that he [and your family]is scared is very normal. We've all been there. It will take alot of courage and strenght going forward. Best wishes to your family. Amy in the Ozarks

Michelle,


i cant answer many of your questions, however i can tell you that I am prayin for you and your brother and all of your family and I am always here to listen !! (((HUGS)))


SHar

Went to oncologist today. recommendations for my brother are
Cisplatin and 5FU. Week one he would stay in hospital and get chemo and then come back week four and get it again. Along with radiation.

other option was a clinical trial with Bevacizumab and Docetaxel. Has anybody heard or done any of these treatments. From what my sister told me the oncologist said it's been in trial for 18 months, they have 20 people in already with good results. They gave booklet on this to read and it is loaded with information. and many side effects. I will have to do some research myself on these drugs.

tomorrow we go see radiation dr.

Michelle

Michelle-

How are you & your brother doing? I have been thinking of you & haven't heard anything. Hope you are all hanging in there. You're a good sister & a great support for your brother.

Hi, McGee - I have stage IV, cancer of floor of the mouth, but the tumor was in my lower left jawbone. I am a breast cancer survivor, having finished lumpectomy and radiation in 1994 just before my husband was diagnosed with CFM (cancer of floor of the mouth. NOTE regarding heritady: My husband died of cancer of floor of the mouth in 1994. Certainly, I am not related to him I never smoked, had a drink or two during holidays. My husband was heavy smoker and drinker. He was 59 when he died, I am 73 now and was diagnosed when I was 69. Many people think that second-hand smoke can cause oral cancer, but there does not seem to be any real studies about second-hand smoke. I had surgery in 2004, left lower jawbone was removed and a plate inserted. The surgeon grafted skin from my left leg, just above the knee and also from just below my left breast. The grafts were intended to cover the plate; but it "failed" and all the grafted skin pulled away, leaving the metal plate with no skin coverage. Prognosis at that time was about 2 years, and chronic infection at the plate site. It has been 3 years and 5 months; and during that time I've had 4 biopsies and one surgery to remove part of a tumor. Last month I had another biopsy - three sites were checked all in and around the plate. All came back as cancer and the prognosis is 2-6 months. I was offered radiation, but the plate would have to be removed and probably could not be replaced, as the bone it is attached to is too fragile. I would have refused radiation in any event as I personally feel the side effects are too gruesome to even think about. Doctors say chemo is only offered in conjunction with surgery and/or radiation. The tumor is growing almost daily, and there is a new problem - bleeding from the site of the original tumor. So, I am praying and hoping for something which would prolong my life without horrible side effects.
My nickname is Katie if anyone wants to respond.

Hi Katie, I am sorry to read about the situation you are in.....I will be praying and hoping, too, for something that can help you....Carol

Oh, Katie, I hope you can find something to help.
This just a horrible disease. Prayers being said for you and yours.....

Katie


My heart and thoughts are with you ! All you have been through and are going through . You sound like an amazingly strong women though to have over come so much , Please know that we are hear to listen and offer as much comfort as we can !

Shar