Hi

I'm new here and just been diagnosed with Stage IV BOT SCC. Am scheduled to begin Chemo/IMRT on June 15. Last week had a neck dissection to remove a few lymph nodes on the left side of my neck, it was then they determined the cancer is originating at BOT.

I'm from Chicago originally, but have lived in SE Asia for the past 20 years. Currently working in Cambodia and will have the treatment in Bangkok, Thailand. Fortunately there are several excellent hospitals in Thailand.

Cheers.

Jimbo, welcome to OCF. You will find lots of info here to help guide you thru your treatments. Now is the time to line up people to help you while going thru rad/chemo. You may need help with transportation, meds, daily living tasks. If you can enjoy eating, now is the time to fill up. Dont worry about gaining a few pounds, you may lose some during treatment. Best of luck with everything.

Hello Jimbo! I wonder what time it is there ! Anyway, welcome to our wonderful family! Always sorry to have new members join though. You & I are born in the same year,same month! I turned 55 on 5/10/10 ! We even had (have) the same SCC. All my trouble was on the right side of my tongue/mouth. You will overcome! I wish you tons of luck with your treatment & please continue to post. Ask any & all questions that come your way. There are soo many smart, helpful & caring people on this site!

Hi Jimbo,

Sorry you're here, but welcome!

There is another expat (British) who was recently treated in Bangkok that could probably give you some tips on the treatment in Thailand. Click here Teacher jon to view his profile and email address.

Hope everything goes well with your treatment.

Thanks for the welcome, it's appreciated. I had a FNA 2 weeks back which was negative, followed by an ND which revealed the cancer. A Pet/CT pinpointed the cancer to the BOT. I finished up with the dentist today and will get fitted for the mask next week. Kick off date for Tx is June 15. Chemo 3x and IMRT 35x.

Christine, my wife will assist with my general needs, transpo etc. She's a sweetheart, but I really feel bad for her. cause she is understandably quite upset. Our dog is not too happy either as he is back in Cambodia and we're here in Thailand. He is used to coming with me to the golf course every am and riding around on the cart while I'm working. And yes I've started to eat everything in sight, last night was lasagna and tonite was ribs, of course I couldn't pass up dessert with that.

Dianne, we're 14 hours ahead of you, about 1/2 day. Sharing the almost same B-day is cool, but sharing the same Dx not so. Thanks for the welcome.

Catherine, First what does the 'RPVC' stand for? The only acronym I can think of is Returned Peace Corps Volunteer. I read through Teacher Jon's thread, he's certainly had a difficult time of it. I will reach out to him soon. Thanks.

Jimbo, I know they have terrific medical care in Thailand. Looked into it a couple years ago when my brother needed a heart valve operation. He eventually elected to stay in florida for that, but my bags were practically packed.

Keep us posted all the way. Stupid questions is an oxymoron, so ask away.

Courage!
David2

(my situation at diagnosis was the same as yours: initial FNA negative, cancer found during the first surgery to remove that pesky "cyst"! And then the hijinks began...)

[quote=Jimbo55].
Catherine, First what does the 'RPVC' stand for? The only acronym I can think of is Returned Peace Corps Volunteer. [/quote]
Jimbo,
You are right. My husband and I were in South Korea 1973-1975 (then underdeveloped); first job after college. We worked in TB control. We backpacked through SE Asia and Europe in 1975 and spent 5 weeks in Thailand in May/June. Saigon had just fallen and it was not an era when one ventured into Cambodia. Of course, everything is very different now.

I hope your treatment goes smoothly. If you need help or have questions, you have come to the right place. People on these boards are a very caring family!

Catherine

I was a PCV in the Philippines in 1988 - 1990, forestry and have been living and working in SE Asia ever since.

Jimbo,

We spent 5 weeks in The Philippines during our travels in March/April 1975. We stayed with PCVs much of the time while there. Loved the country. At that time South Korea was considered a hardship tour (no plumbing, etc.).
Like you, there are quite a few of our fellow Korea volunteers still in SE Asia. It is an experience that remains forever.
Thank you for your service to you country.

NOW, Go Kick Cancer's Butt!!!

Well everything is in place to begin treatment next week Tuesday the 15th. I am finished with the dentist, picked up the flouride trays and was fitted for the mask yesterday. The schedule is to begin the rad treatment on the 15th and the 1st of 3 chemo treatments the following day. Any last minute advice???

Jimbo,
My last minute advice would be to start eating everything you like and lots of it.

Eat like crazy. Eat anything and everything you can imagine. Once radiation starts to affect your taste buds and salivatory glands, eating becomes more difficult. Things wont taste the same and it will become a struggle. So eat lots and lots now so you do not have regreats.

Have you had a hearing test? I assume you are getting Cisplatin which has a nasty side effect for some (me included)resulting in permanent hearing loss. I didn't have a baseline hearing test so it's impossible for me to prove that Cisplatin was the cause even though I know it was.

I would also ask for a baseline TSH as the radiation often destroys/damages our Thyroid leaving the "experts" to guess at the proper amount of meds to return us to normal.

Also start using the trays now and continue throughout your Tx and for the rest of your life. I did miss a few nights during and post Tx but wear them as many as possible.

Just listen to the ones saying eat while you can. After 3 years I still don't get hungry or have the abilty to have any taste at all except for the 1st bite. It;s strange to never feel hinger pangs and have the desire to eat. It's a force yourself that you will have to do and usually you will want to quit after a couple of bites. Good luck and fight, fight , fight this thing.

Jimbo,do you had a peg tube? Some have made it through without one but most have needed it as swallowing becomes very difficult or (in my case) impossible. I could barely swallow water and had to pulverise pills and take them through the tube. After treatment you may need to see a speech therapist to relearn swallowing as the muscles forget how.

I agree 200% with a baseline hearing test. Carol had carboplatin instead of cisplatin due to the well known issues regarding hearing loss due to cisplatin. Carboplatin has some issues with hearing loss but not like cisplatin. She lost her ability to hear out of her left ear about 2 weeks into treatment. (She had a right ear mastoidectomy when she was 14). I purchased one of the over the counter AMPLIFYING devices, as a short term hearing device until she was able to have a hearing test. It's torture enough having to fight OC but to have hearing loss added to the mix? Unfortunately, Carol recently had a hearing test and she was told there is no correlation of hearing loss and the use of Carboplatin.

Having a baseline hearing test along with a baseline TSH should be pre-requisites prior to treatment of OC.

Linda

I've got the "eat everything in sight" down pretty good, so no worries on that end. Thanks for the advice on the hearing test and the baseline TSH, I'll follow up on those tomorrow. Cheers

Hi Folks

Just finished the 1st week of Rads and 1st of 3 cistplatin treatments. Everything fine so far, only complaint is the almost-constant bloated feeling. I think its most likely from me eating as much as I can and all the water I'm taking in. I stayed in the hospital for 2 nights during the chemo treatment. They wanted to keep me on an IV drip before and after the chemo to flush it through the kidneys. Not to much to complain about at this point, though I do realize these are early days indeed. Just wanted to say thanks for your support and encouragement!

Well I will tell you my experience. I had 10 hour surgery, and am almost to the end of 30 rounds of radiation, only 12 left, so i guess a little over half way through, but i like looking at it as almost done. Not everyone is the same, and I have had people tell me I will be able to get through just fine without a peg tube, and boy were they wrong. I wish i would have gotten the peg in before starting radiation.
Starting about a week ago, I wasn't able to eat or swallow anything, and I went 3 days with nothing coming into my system till they put a PICC line in and started giving me 2 bags of liquids everyday.
I am scheduled to have the Peg put in on monday the 28th, and let me tell you, that day cant come soon enough.
I have mouth sores on my inner lip, and on the entire left side of my tongue, because that is the only part of my real tongue i have left, also sores around the entire mucosa of my throat. They said they wouldn't show up until the 3rd or 4th week, but mine started to show up before the end of the first week.
2 weeks ago the thick nasty saliva started showing up and about a week ago I started vomiting about 5 times a day.

I am hoping none of this happens to you, but you may want to take precautions to be on the safe side. The minute you think you will need the peg, don't second guess yourself like i did, and just get it in. I regret not letting them put it in before my treatments, but i was nieve.

Hope you sail through this a lot better then i did. But neck and inner mouth radiation give you some pretty bad side effects.

Good luck and stay strong.

Jim, week one finished without any significant problems. So far, so good. Sorry you feel bloated from eating so much, but keep it up. Eat as much as you can and drink lots of water. Being hydrated will make a big difference in how you feel, so push the fluids. Please keep checking back with your progress and questions. Remember everyone is different and some people struggle alot more than others.

oh yes forgot to say, everyone is different. Some people just sail right through with little to no side affects. I am very jealous of them. So hopefully you will be one of the ones I am jealous of,

My RO would not start treatment without the PEG tube. I am so thankful I had it. I had a rougher time than most with the stupid treatments. Had to take a break after week three, because my throat was so bad it had swollen almost completely shut and could barely breathe. Then I was in the hospital for a few days. Not everyone has the side-effects, I think I had a rougher time during treatment, but healed up rather quickly after treatment. I quit using my PEg just 2 months after treatment. I would do what you want to do or what you are comfortable with.

Well here goes... I'm David and i'm in the last two weeks of my treatments for head and neck cancer. Discovered Marched 22, 2010 via a protruding lymph gland on left side of neck. It was removed, PET Scan showed another node deep and below the first one and some cells but no tumor at the base of tongue. I have my last chemo treatment tomorrow with 8 more RT to follow. In a few weeks i plan to travel to Long Beach, California for further treatment using radiation implant therapy and hyperthermia for one week. I hope this is the right way in introduce myself and i'm in the right place... I'm 53 and my goal is to beat this demon on my terms. Look forward to anyone getting back to me.

David, welcome to OCF. You will find lots of info not just on the forum but also on the main OCF pages, both areas have search functions.

Please start a new thread when you post unless responding to others posts. This way we can properly greet you and the original poster gets the attention their post deserves.

Hi Folks,

Sorry I haven't been on the past 2 weeks, as it turns out the internet server here was blocking this website (and a few others) inadvertently. After finally figuring out the problem was not with my computer, it was easily rectified.

I am almost at the 1/2 way point in my treatment: 3 weeks of 7 RAD is complete and the 2nd of 3 chemos is this week. So far so good. I have a little difficulty in swallowing, but can still eat 'soft foods' and have maintained my weight so far. The taste is off, but not too much. The dry mouth has not been too bad yet. I guess I don't have much to complain about for now. I think this week with the 2nd chemo boost will be a real test, after that I will be more than 1/2 way home and hope I will be feeling as good next week as I do this. Cheers.

Congrats Jimbo on being almost 1/2 way through your treatments. Sure hope all continues to go well. Will be thinking of ya.