newly diagnosed Base of Tongue with lymph node involvement

buellman91 said:

Morning guy
Once things start rolling, I will be getting rads at 8 AM and then going right upstairs.My schedule is Mon. then Hydration on Wed. and Fri. In 2006 I did the same thing then went right to work and never missed a day. Just FYI if you have to miss a radiation treatment, that is no big deal.....they just add it on at the end. Do your Docs say Robertwill need surgery after the burn/poison regimen?We live in Zionsville?
Bill

Denise & Robert
Wishing you best of luck as you go through treatment. I am 23 months post and doing well.
My suggestions to you are eat, eat, eat, all you can now. Eat calories, try to gain some weight in the early days of Rads. Make sure you are hydrated and most of all, make a daily journal of all the meds and when you take them...you can get confused real easy if you don't. When you can't get enough calories in use the peg alot. Try to keep your weight up and get all the nutrients you need during this time. It will help you in 6-7 weeks when you feel like crap.
This is doable and the cure rate is great. So stay focused, be positive and you'll be giving advice to other newbies in a very short time....
all the best,
Steve

hdwchisholm said:

treatment
Hi Denise. I do not know all of the jargon of T1-N2b-MO yet. I was diagnosed MArch 2011 with stage 3 and a nickel sized tumor on the base of my tongue. The tumor was surgically removed with a Da Vinci robotic machine. It was actually dime sized and the edges were clean and clear. 38 lymph nodes were removed from the left side of my neck. Pathology showed that the evil little guys had made microscopic holes in node. Right side of neck did not show signs of cancer. I had 33 sessions of radiation from a tomo machine which can specifically locates the direction and strength of the radiation. I was scheduled for 3 large doses of cisplatin though only had 2 as the chemo doctor only wanted to have the chemo during the radiation. My 2nd dose was postponed as my blood counts dropped too low. Ask your doctor about this. I did not get tatooed as the mask was tatooed. The first time with the mask being clamped down onto your face is kind of freaky and claustrophobic. Had them take it off several times so that I could adjust physically and mentally. The radiation burns the outside of the neck and inside of the throat. I used aquaphor cream to help with the neck burn. I found this better than the radia gel which the hospital gave me. It was hard to swallow after a week. Thought pain was going to be real bad then it backed off. Suggest carnation breakfast drink for g tube feeding. 500+ calories per can and is less expensive than ensure. See if Lehigh Valley has a dietician. For the chemo take the anti nausea meds before you feel ill. After the first chemo, i took my meds when I felt ill. Next time I took them right after the treatment. Much more effective. Ask the doctors and nurses [which mat have more time] a lot of questions. Hope this helps. Try to stay positive. My October 2011 PET scan was clean. My January 2012 CT scan was clean. Best, Homer

Denise tongue cancer
Denise you had the surgery how much of your tongue was removed ?
They said 40% at time of diagnosed but with the waiting time of pulling
Teeth a d healing time it has grown

hdwchisholm said:

treatment
Hi Denise. I do not know all of the jargon of T1-N2b-MO yet. I was diagnosed MArch 2011 with stage 3 and a nickel sized tumor on the base of my tongue. The tumor was surgically removed with a Da Vinci robotic machine. It was actually dime sized and the edges were clean and clear. 38 lymph nodes were removed from the left side of my neck. Pathology showed that the evil little guys had made microscopic holes in node. Right side of neck did not show signs of cancer. I had 33 sessions of radiation from a tomo machine which can specifically locates the direction and strength of the radiation. I was scheduled for 3 large doses of cisplatin though only had 2 as the chemo doctor only wanted to have the chemo during the radiation. My 2nd dose was postponed as my blood counts dropped too low. Ask your doctor about this. I did not get tatooed as the mask was tatooed. The first time with the mask being clamped down onto your face is kind of freaky and claustrophobic. Had them take it off several times so that I could adjust physically and mentally. The radiation burns the outside of the neck and inside of the throat. I used aquaphor cream to help with the neck burn. I found this better than the radia gel which the hospital gave me. It was hard to swallow after a week. Thought pain was going to be real bad then it backed off. Suggest carnation breakfast drink for g tube feeding. 500+ calories per can and is less expensive than ensure. See if Lehigh Valley has a dietician. For the chemo take the anti nausea meds before you feel ill. After the first chemo, i took my meds when I felt ill. Next time I took them right after the treatment. Much more effective. Ask the doctors and nurses [which mat have more time] a lot of questions. Hope this helps. Try to stay positive. My October 2011 PET scan was clean. My January 2012 CT scan was clean. Best, Homer

Denise tongue cancer
Denise you had the surgery how much of your tongue was removed ?
They said 40% at time of diagnosed but with the waiting time of pulling
Teeth a d healing time it has grown

hdwchisholm said:

treatment
Hi Denise. I do not know all of the jargon of T1-N2b-MO yet. I was diagnosed MArch 2011 with stage 3 and a nickel sized tumor on the base of my tongue. The tumor was surgically removed with a Da Vinci robotic machine. It was actually dime sized and the edges were clean and clear. 38 lymph nodes were removed from the left side of my neck. Pathology showed that the evil little guys had made microscopic holes in node. Right side of neck did not show signs of cancer. I had 33 sessions of radiation from a tomo machine which can specifically locates the direction and strength of the radiation. I was scheduled for 3 large doses of cisplatin though only had 2 as the chemo doctor only wanted to have the chemo during the radiation. My 2nd dose was postponed as my blood counts dropped too low. Ask your doctor about this. I did not get tatooed as the mask was tatooed. The first time with the mask being clamped down onto your face is kind of freaky and claustrophobic. Had them take it off several times so that I could adjust physically and mentally. The radiation burns the outside of the neck and inside of the throat. I used aquaphor cream to help with the neck burn. I found this better than the radia gel which the hospital gave me. It was hard to swallow after a week. Thought pain was going to be real bad then it backed off. Suggest carnation breakfast drink for g tube feeding. 500+ calories per can and is less expensive than ensure. See if Lehigh Valley has a dietician. For the chemo take the anti nausea meds before you feel ill. After the first chemo, i took my meds when I felt ill. Next time I took them right after the treatment. Much more effective. Ask the doctors and nurses [which mat have more time] a lot of questions. Hope this helps. Try to stay positive. My October 2011 PET scan was clean. My January 2012 CT scan was clean. Best, Homer

Denise tongue cancer
Denise you had the surgery how much of your tongue was removed ?
They said 40% at time of diagnosed but with the waiting time of pulling
Teeth a d healing time it has grown

Scaredsister. said:

Denise tongue cancer
Denise you had the surgery how much of your tongue was removed ?
They said 40% at time of diagnosed but with the waiting time of pulling
Teeth a d healing time it has grown

sorry
so nervous did not realize I had posted same question 6 times...

Is there any one on this site that had part of their tongue removed ??
Please I need to talk to someone!!!

Kenneth J said:

THE JOURNEY BEGINS
1 COMPLETED 33 RADIATION TREEATMENTS AND 3 CYSPOATIN TREATENTS OVER SEVEN WEEKS. I ALSO HAD
PART OF MY TONGUE REMOVED AND RADICAL NECK DISECTION. LAST TREATMENT DATE WAS NOVEMBER 18TH. ONE OF MY ONCOLOGIST NURSES ALWAYS TOLD ME THAT THIS WAS A JOURNEY.SHE IS WRITE, EVERYDAY SOMETHING IS DIFFERENT. CHALLENGES OR VICTORIES. MY BEST ADVICE IS FOR YOUR HUSBAND TO MAINTAIN A JOURNAL. DR APPTS, PERSON HEALTH, PAIN AND NO PAIN DAYS. THE RESON FOR THIS IS WHEN YOU GET FAR ENOUGH THROUGH THE JOUNEY YOU WILL HAVE A RECORD OF EVETS AND FEEL BETTER WBOUT WHERE YOU ARE AND THE ACCOMPLISHMENTS THAT YOU HAVE MADE.

TAKE CARE AND KEEP THE FAITH!

Hello Kenneth
Your the one I need to talk with if your still on this chat room.. I need anwsers and someone to talk with about the cutting of the tongue thing..I am very scared and freaked out for my brother and is name is also Kenneth.....Please get back to me when you have the time....

Thank You,.

scaredsister

Scaredsister. said:

sorry
so nervous did not realize I had posted same question 6 times...

Is there any one on this site that had part of their tongue removed ??
Please I need to talk to someone!!!

Plenty of people who post here
Who have had part of their tonuge removed. I'm sure if they see your post they will respond. I tried to send you a PM to help you figure out how to post more easily here, but the system, for some reason, does not redognize your username. I've not run into this before, but assume it is a temporaray glitch in the system. I copied the PM, therefore, and will post it to you right here:

Hi,


The board is hard to follow sometimes. Some people will not re read a thread beyond the first time, and will miss what you need if you are posting in the middle of a thread. It looks to me like you are a new poster, with problems that partly fit into the thread I saw you on, but are also unique to your situation.

If you have individual questions for indicvidual posters, go to your CSN email and write the q's to them as email. When they come back to the site, it will notify them they have private mail. That works pretty well,, and if they don't respond, there's nothing you can do about it.

Your general situation and your bigger questions you should create a major thread and post your own topic on this. That way everyone gets to see who you are, and can respond within YOUR individual thread. Don't be embarassed to create a thead and say HELP!!!!!

Also, FILL OUT YOUR BIOGRAPHICAL INFORMATION RIGHT NOW. Otherwise, we are all having to guess what your background is, and that's not fair to you, nor to us. It will take some time to get all this answered. On Sunday, not too many people are around. More onthe weekdays.

So welcome to the board. There are plenty of us here with plenty of background in this nasty malignancy. Hope to hear from you.


Pat

Hope you see this, as its the best I can do without being able to send you a PM.