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Joined: Jul 2007
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I'm going in for my 3rd surgery on monday. I thought my second surgery was going to be good enough but unfortunately my margins weren't clear of cancer. This time they're going to do a 1/2 glossectomy with a skin flap coming from my left forearm and attatching that to my tongue for reconstruction. To cover that flap on my forearm they'll take a skin graph from my thigh and put it on my wrist. They're also going to take the rest of my lymph nodes out of the left side of my neck since they found cancerous nodes on that side. Because of the severity of swelling I'm getting a feeding tube and a tracheotomy temporarily. I'll need the feeding tube however for a time being b/c I'll be starting chemo/radiation shortly after. I have no doubt that with the support of family and friends plus the great medical care I'm recieving that I'll be cancer free for years to come. I was a collegiate swimmer and now am currently serving in the military. Staying physically fit is a way of life for me. I've already decided that once this over I will do an Iron Man. However, going into the treatment is rather scary and I would love any advise from people that have been through it already or currently going through it.


Kurt
25 yr old. Dx 11 July 07 originated in tongue Stage IV. 3 surgeries had clear margins Had a hemiglossectomy 13 Aug and radical neck disection - Left side. chemo/rad Started 24 Sep 07 Finished 7 November 07-Never Smoked Drank on special Occasions
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Hi Martine,
While i can't give you any advice seeing as I am just beginning to battle this horrible disease with my mom (stage 4 scc) I will offer my best wishes.

Good luck with your final surgery. You have a fantastic attitude and I'm sure it will help.

I'll keep you in my prayers.

Jackie

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Hi Martine,

My husband also had stage 4 BOT cancer. He did not have surgery. He did have chemo/rad and that was completed this past Monday.

What was done during your first two surgeries?

An Iron Man is a great goal! I second Jackie in applauding you for the fantastic attitude.

What kind of questions do you have?


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Hi Martine

welcome to our second military member in the last few weeks.Your attitude sounds as determined and positive as our friend bob who looks on his fight against cancer as a war .Its a great analagy and i hope you too will be successful in your campaign


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Martine,

Welcome and I'll pray that you do well on Monday. I am active duty military too, E8 USAF. And many times I have raved about Tricare and our Drs. I was treated at Wilford Hall in San Antonio TX. And am cancer free today because of their skills and support of my family and the Air Force. As you can see from my signature I had some of the same treatments you are going to have.

After you start the radiation (RT) and chemo (CT) things will seem OK at first but then they will get tough, keep in mind everyone is different. I lost taste after 2 weeks of RT, then got sores, dry mouth, nausea etc...things got real bad around week 5. Around 3 weeks post treatment things started to turn better. I had a PEG too and used it mainly for my meds and a little liquid food. But someone that wants to be an iron man will get through it. And since your in great shape that will help a lot too.

There are numerous posts about the effects RT/CT, I suggest you hit one of the searches at the bottom. There was a very detailed post about the treatment side effects from a a member named DavidCPA, if I can find it I'll put it on here.

It's best if you just ask your specific questions and you will be amzed at the support you will get here. I've also been through the militaries MEB/PEB process so if you have questions about that too, I can let you know what my experiences were.

Take care and you are in my prayers.

Tim


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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The link below is from a post by davidcpa, I thought it was one of the better ones on what to expect.

Tim


http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/2/t/000850.html#000012


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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Martine
Read Lance Armstrongs book, I started it on my 1st chemo. I could not put it down. Don,t let anything get in the way of your goals, including Cancer. From the start just keep saying you will whip this. It is not and easy recovery, but nobody said anything is easy. My wife just had her 5 year from breast cancer yesterday. Stay positive.


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
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Martine, one more Stage 4, 5 years ago, here. Two things will work in your favor: 1, you are in great physical shape; and 2, you have a positive, can-do attitude. Both make a whale of difference when things start to get ugly about week 5. I had both and it was much easier for me than many of the patients I saw every day. Just remember this is a small part of your life and it WILL be over. And while you are going through it, there will always be someone here who can answer any question you may have. The OCF provides one heck of a cyber support group!

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Hello Martine

We will all walk with you through this journey.

Stay the course and this shall be overcome. You have a positive attitude to defeat this, and you will.

Do not hesitate to post any and all questions you have and you will recieve great information & support from the OCF.

Many here are praying for you tonight. Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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Everybody, thanks for the advice and encouraging words. I already bought Lance's book and look forward to reading it. Those that have had a hemiglossectomy how are you coming along? Is your speech ok and are you able to eat alright? I'm doing the forearm skin flap reconstruction. My surgery is tomorrow and I can't wait to wake up from it and be moving forward!


Kurt
25 yr old. Dx 11 July 07 originated in tongue Stage IV. 3 surgeries had clear margins Had a hemiglossectomy 13 Aug and radical neck disection - Left side. chemo/rad Started 24 Sep 07 Finished 7 November 07-Never Smoked Drank on special Occasions
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