My name is Brian Krause. I am 48 yrs old and currently 7 months out of radiation and chemotherapy for a SCC tumor at the base of my tongue.

Three months after being diagnosed with Sleep Apnea and starting using the CPAP breathing machine at night, I noticed a small swollen lymph node high up under my right jaw. I went to my GP and she said that if it doesn't go away in 30 days ( maybe a small infection) a needle biopsy would be in order. It didn't go away and the needle biopsy was inconclusive. A surgery to remove the node showed SCC. Then a trip to a very good ENT showed a small tumor at the base of my tongue right next to where the lymph node was.

I started radiation (7000 rads over 35 treatments) and Chemotherapy ( Cisplatin, three treatments 6 hrs each) the next week. I think the Sleep Apnea was the biggest contributing factor in weakening my immune system to start with and was a big factor in my getting Squamous Cell Carcinoma. I don't smoke , drink heavily, chew tobacco etc... I was though, exposed to heavy second hand smoke once a week at a bowling alley for many years. I was treated at the Cleveland Clinic Oct

Brian ! Hooray for you. What a great attitude. I wish you could have talked to my husband about 4 weeks ago about nutrition. He wouldn't listen to me and is now down 10 lbs. and losing lots of muscle strenght. But his attitude is positive like yours. Thanks so much for posting. Amy

Hi Brian. Soory to meet you. Wish there didn't even have to be forums like this. I am glad to hear of your courageous fight. So how did you keep your neck from getting to burned and what did you do about your sore throat? Any tips on that you'd like to share?

Blessings and strength,
Barbara~

Hi Brian,
Welcome to the forum and glad you are beating this. You sound a lot like me. I was damned if I was going to let this thing beat me, but then my doctors gave me no reason to believe that I wouldn't get through it. I lost only 4 or 5 lbs which I needed to lose anyway, went back to work 3 weeks after radiation (no chemo). The one thing I did wrong was not get any exercise and I think that is what contributed to my being so cold. I think a positive attitude really helps get through these treatment issues and yours is great.

Take care,
Eileen

I must have had good genes because my neck got red but not really too bad. I think the skin peeled off about the end of treatments and the nurses gave me some creme to put on my neck every day which I did religously. That helped alot. I'll have to go find the stuff and post it. My throat was sore but really not too bad. I was on pain patches for about a month, more for my tongue soreness than anything. My tongue swelled up from radiation and my teeth rubbed the sides so much that it got really sore. I used BMX to numb my mouth to eat and drink. I truly believe that nutrition is what saved me. I was getting over 3000 calories a day with my shakes and that helped my body heal faster. One other thing I did during almost all of my treatment was to take a quart bottle of water and add 1 tsp of salt & 1 tsp of baking soda. Shake it up then rinse, gargle and spit out. My radiation Dr. harped on me to do that as many times a day as I could. I started the first day of radiation. He said it breaks up the thick mucous that the radiation burns produce so it heals faster. He was right..... It does do that very thing. I still do it several times a day. He told me that he has successfully treated 100's & 100's of patients the way I was treated and has had a very good success rate. His name is Gerold Saxton at the Cleveland Clinic.
You know, the parking lot at the Cancer Center at the Cleveland Clinic is ALWAYS full..... I hope to help anyone who needs it to get thru the treatments and continue to live their lives.

Brian
I sent you a message (I think it was under the private post).

My husband's radiation doctor was Dr. Saxton also. Who did you have for your ENT and chemo doctors?

Dr. Saxton is a stickler (sp) for not losing weight. My husband sees the ENT every six weeks and the chemo doctor almost as often. He sees Dr. Saxton again in a couple of weeks. My husband has been back to cycling (bike) since April so he hasn't gained any weight back. The ENT cannot believe he is back riding. The ENT just smiles and shakes his head in disbelief. My husband tries to ride five times a week. He rode 84 miles last Sunday.

Dr. Saxton treated someone I work with at over 13 years ago - he had a T4 no lymph node involvement so did not have chemo. Sounds like Dr. Saxton has a great success rate.

I went to every Radiation treatment with my husband and stayed with him in the hospital during his chemo treatments (96 hours - twice). I saw the patients everyday and now understand what the radiation nurse meant when she said that "THESE ARE STRONG PEOPLE TO GO THROUGH THIS TREATMENT".

I am glad to hear that you are going well.

My ENT is a wonderful doctor. His name is Sam Albert. He works out of a clinic in Akron, Ohio next to City Hospital. He is a good surgeon and when you look him in the eye, you know you can trust him. He told me that if I was "his" brother, he would send me to see Gerold Saxton (radiaton) and David Adelstein (oncologist) at the Cleveland Clinic. It wasn't to dis any local doctors but he trained under both of them and knew they were REALLY good.

My wife drove me to every radiation & chemo treatment and was truly my hero in all of this. It takes a special person to care for someone who is hurting like I was. I love her very much!!!

Tell your husband to keep it up and never give in!!

Brian,

You are truly an example of the power of positive thinking. Congratulations on your wondeful progress and good luck with the treatment for the osteoradionecrosis.

Please keep us posted.

Jerry

Brian thank you for the information. I am using Biafine three times a day but my neck started getting red today and it is only treatment #7.

I have Dr. Levy at the Jewish Kenwood Hospital Radiology Center in Cincinnati Ohio. He was recommended to me and he is such a wonderful man. I knew the minute he said he had a mask made on his self to see how it affected his patients so he could understand I knew he was a good man.

I have been using the water/ salt/ Bk. soda but maybe only twice a day. Guess I need to up that to lots more huh?

Thank you and may you continue on to a lifetime of health.

Blessings to you,
Barbara~

It is important to get in the habit of rinsing/gargling as you will be forced into it very soon. When the mucous gets really thick the rinse will cut it right out. Salt helps the healing too. Your skin effects are going to be what they are as everyone is different. My skin took it very well and all I have now is just a permanent tan. I think keeping it moistureized is good. The cremes really helped me. The tougher parts of the treatments are coming so keep your chin up and meet it with a positive attitude. You WILL get thru this and you WILL survive!!

Sincerely,
Brian

Thanx again Brian. I was surprised this morning when I took a drink of water and it bypassed a bing cherry. I am sure that "cherry" will soon be a lemon but I am trying not to think past today.

As I always say "Better me than one of my kids."

Blessings,
Barbara~

Hey Brian...

your story is very inspirational.

I was wondering about the osteoradionecrosis.

Do you think there is ANY thing I can do now prophylacticly (sp?) to help save my bones (or anything else for that matter) since most likely I will be having the lifetime max starting in about 3 weeks.

Also, maybe I could start now with the rinse and any suppliments which might help stave off side-effects.

Thanks!

Dear Brian:
Congrats to you, I also Im undergoing treatments now. I also feel a positive attitude makes a world of difference.
I am post induction chemo and 2 cycles of radiation and chemo, I have 3 more cycles to go.
I feel so strongly about the attitude, right now my mouth is full of sores, but I refuse to give in to them. I have been using a food processer for ease of eating. At times to look at food is nauseating but I know I have to eat to get thru treatments.
I try with a sense of humor to get thru this, after my second round of induction chemo I had severe diarrhea for 48 hrs. (which I was hospitilized for hydration) I told my oncologist I had a favorite new chair over the weekend and it was a commode. He said well you have not lost your sense of humor.
I was told not to cook during trt. (because of the smells) well I am cooking on my off weeks, and doing as much as I could physically. There are days that I am fatigued and I know when I have to rest.
Tuesday when I went for my weekly Dr. visit I was told I was doing very well, the Dr. looked in my mouth and said I have severe mucositis I told him it could be worse. He shook his head and said it is very bad. Well, it might be but it is not going to stop me from doing what I can do. I cannot dwell on the negative during treatment for if I do I know I will start feeling sorry for myself.
I work in the oncology field and during my first cycle of radiation and chemo I went to visit my co-workers (I work and am being treated at the same institution) and a very well-known oncologist told me. You have to keep a postive attitude, it accounts so much for a recovery.
God bless you and all of us that are going thru this.
Cindy B

Do you think there is ANY thing I can do now prophylacticly (sp?) to help save my bones (or anything else for that matter) since most likely I will be having the lifetime max starting in about 3 weeks.

I don't think there is anything that can stop the radiation effects to your bones if the radiation has to go thru them to get to the tumor. My oral surgeon said that under 6000 rads your bones will be hurt but not enough to make them die. After 6000 - 7000 rads, they said it is almost enivitable. I got 7000 rads (35 treatments @ 200 rads/day ) and since the tumor was at the base of my tongue, the radiation went straight thru my jawbone to get there.

I think the salt/soda rinse would be good habit to get into now as well as feeding yourself very well.

Good Luck. Keep your chin up and stay strong. You'll do fine. This is a curable disease.

Brian