p.s. Paul, I was diagnosed with second primary tumor on soft palete 11/10, going in for surgery 12/14, they will use muscle from my right arm for this one!

Paul - your having the same surgery my mother had at Mass Eye and Ear 2 years ago. Stay strong!

Paul,
Welcome!!
Your first post caused a flood of many emotions to come back to me. I'm not an OC survivor, I had clear cell sarcoma in my right leg. I was treated ten years ago. The reason I hang out here is that I feel I can offer advice and information to people as a result of my profession.
I was 37 when I was diagnosed, my son was 7 months old. I have experienced the load of a father with an infant son when such a wall is put in front of you.
As others have said, you have a positive attitude and a plan, and you are looking out for yourself. Keep this up!!
If I can be of any help to you please contact me.

My thoughts and prayers are with you and your family.

Cheers

Mike

Paul,
You are so fortunate to have found this site. The support and information passed between the members is astonishing. I join the others in wishing you a speedy and complete recovery. Be strong and accept all the help you can.

Malka

Paul,
I too had tongue cancer.it's been almost 4 years now,no sign of it coming back.Good luck with all your tests and my prayers and thoughts are with you.
lynn

Hello all,

Thanks for the many kind comments and I do apologize for the long delay in updating about my condition. The surgery went well at Brigham & Women's hospital in Boston on December 17. I was released from the hospital on 12/24. Just in time to spend the first Christmas with my family--more than I could have dreamed for. Dana Farber said the cancer was limited to just 1 lymphnode and my tongue, they took 7 test biopsies in my mouth during surgery and all of them came back negative for signs of cancer. So we are hoping that they got it all.

I currently undergoing Radiation and assisted lower dosage Chemo treatments. This week will be my fourth and last Chemo treatment. I have completed 16 of the 30 scheduled radiation treatments, and will down to 9 after Friday of this week. My mouth has started to become fairly sore from the radiation. Lost most of my taste buds by the end of the second week of treatments, so the need to eat is pretty discouraging now. Looking forward to having my radiation over with on March 27th. So I can begin healing, doctors seem to think it will take 2-3 weeks after my last treatment for pain to go away. Then from what I gather it takes months before tastebuds can recover.

Thanks again for all the support!


Paul

Focus yourself on the remaining rads and look to the 3rd week or so post Tx before you will walk out that tunnel your in. For most of us the 2 to 3 weeks post Tx were our worst so be prepared and don't be discouraged if have the same reaction. Even though "eating" is tasteless and mentally deflating please do yourself a huge favor and pour in at least 2000 cals and 48oz of water each and every day. Not saying it's going to be easy to do that but I can say it will definitely be much harder if you don't.

When your out of the tunnel there will be plenty of time to discuss your recovery but don't expect anything to recover for months and months. I am almost 19 months post Tx and I just recently noticed a big taste/saliva improvement and I hope I'm still not finished.

David you were certainly right about being in a tunnel. This past week things have gotten progressively worse. I caught a cold part way through the week, and things have been extremely bad since then. My mouth is extremely sore, and I have been coughing up pleghm. They postponed my Chemo treatment from last week to this week, and put me on a z-pack antibiotic for my cold. I can no longer eat or drink anything by mouth. Lost 7 pounds last week, and have been trying to put as much Jevity and Boost through my peg tube as possible. Been pretty depressed, but yesterday my RO prescribed Duke Solution. I tried that last night, and it worked very well. It has given me the encouragement that I can make it through my last 8 treatments.

Paul

Paul,

I have reposted some things that may help you:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.




Editing Signature Line:

It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.

A quick addendum to David's information about adding diagnosis and treatment information in a signature (which was accurate the way the board was previously structured, but has changed):

To include signature information: Click on My Stuff (at the top of each message board page), then on My Profile. Scroll down until you see the Signature box, then type the info in there. Be sure to hit the Submit button at the bottom of the page when you're done.

-- Leslie