I was very fortunate that Moffitt's one and only IMRT at that time didn't malfunction once during my Tx. I was warned by their staff to expect it but it didn't happen to me.

Anne

You have gotten so much good advice that I don't have anything original to add except to repeat Christine's advice about getting your TSH level checked. It's a simple blood test and MD Anderson may well do it automatically for all I know BUT you really should ask them to do one. While my CCC doctors were top notch on Cancer, for related issues like Thyroid & PEGs- "not so much".
After IMRT, I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again and back to 1.48

The key is to know what your TSH level is before IMRT so you can get back to it. It's not good enough to be "in the range" of normal, you want to recover to what you were. It's one of the few areas we can actually do that.
Best wishes
Charm

All of you are amazing. I feel like I would have a hard time keeping all those meds straight. Only a few have I heard of.

We are in Houston tonight and start things tomorrow. But I don't think the radiation therapy will start until next week.

Snow in Kansas and Oklahoma and even Dallas, but none of course in Houston.

My fellow teachers put together two baskets of goodies and cash to take on the road. Another totally unexpected random act of kindness . . . A friend emailed me: our thoughts and prayers are with you, show them down there what a tough Kansas girl can do!

But of course none of them understand quite the way folks do on this forum.

Best,
Anne

Amen to to Charms always cold. I can't add anything to what good advice you are getting. Good luck and make the best of everything as it can get tough.

Hello to all,
Thanks for all your help. Chemo is being added to my IMRT, results of microscopic extracapsular extension on my one involved lymph node. I am feeling much better about this than I thought possible. Just glad someone is getting it right from the "new" beginning, this time at MD Anderson. My medical oncologist told me: your lymph node is not a recurrence, it had to be there before your original excisional surgery--it was just not detected early on, because it was so small. . . . I really don't blame anyone for this, it just happened.

Everything was small: my original scc on my tongue and my lymph node, but the path report was moderately well differentiated, so obviously there are some wilder types out there, maybe we don't know. But doc says those kind are mostly easier to kill.

In fact, both my RO and MO think they have a good shot at curing, in part because everything was so small. I have 30 rad and 6 chemo (cisplatin). I have lots of confidence in them. We are starting middle of next week. Still have a little edema from my neck,tongue surgery 3 weeks ago. Not too bad, though.

I have gained 5 lbs, so am now 115, I am still working to gain some more. My appetite is great, and I have good energy. We meet tomorrow to talk more about meds with radiation folks, schedule, etc. MO said she/they would be in control from the beginning with nausea issues. "It's rough, but we will get you through it." I believe!

Again, thanks. I have the names of many of your suggested meds written down. Most of all, though, it helps to know so many of you have perservered, even if it meant taking additional treatments. (also impressive to me) At school, I have a sign that has 10 suggestions for success: mostly they all begin with "Try", with variations like, "try again," "try again a little differently", and "ask someone else who's done this and try again". It applies to virtually everything in a person's life, not just school.

Yes, I know I will have side effects, some long term. I'll deal with them and get help. When I start my treatment I will post under the treatment forum.

Best to all,
Anne

Hi Anne: I am also new to cancer (about a month since an initial diagnosis of SSC). They found the primary tumor on the base of my tongue; it's HPV+, metastatic to lymph node. I am working with a cancer center close to home (Baystate in Springfield, MA) but tomorrow have an appointment with three doctors at Dana-Farber in Boston. I don't have much to offer by way of advice, just wanted to let you know that I will be thinking of you and sending good thought your way. We are at the beginning of our journeys and we have to believe that we can do it. We can. As I know more about my condition I will pass along whatever might be helpful to you. Best, Michelle

Michelle Ann,
So are you getting a second opinion at Dana-Farber? Or did your docs want you to see them?

The fact that yours is HPV positive makes it more curable, all and all, so I am told.

Anne O