Good evening, My name is Ana and i am the caregiver to my husband, who was diagnosed 3 weeks ago. After having a sore throat for 6 weeks, he went to the family doc, who immediately sent him to the ENT, biopsy April 16th, poorly differentiated 4cm base of tongue tumor, spread to nodes on both sides, but no distant mets. After a 2 week marathon looking for treatment options that took us through Mayo Clinic, MD Anderson & Univeristy of Chicago, he has decided on treatment at the U of C...6 weeks of induction chemo followed by 10 weeks of concurrent chemoradiation. Today, we went for his radiation simulation, first chemo scheduled for next Friday.

I've been reading this site for the past few weeks, have already gotten some very useful informationl, thought it was time to introduce myself.

Hi Ana, welcome to you and Vince. Glad you found your way here. Lots of good folks and good info. whereabouts in IL are you ?
I am in Huntley, about 60 miles west of Chicago. wanted to let you know that there is an OCF walk/fundraiser in Arlington Heights on Sunday, June 10th, if you and Vince are up for it.

Hi Ingrid and thank you for the welcome. We are way north, almost in Wisconsin, not far from Gurnee. With chemo starting on next week, we'll need to see how he reacts, but thank you for telling us about the fundraiser. My husband is hoping to work at least through induction chemo, but we shall see.

Ana,

I'm curious, what were the Tx plans from Mayo and MDA? Haven't seen many get 10 weeks chemo Post Tx.

Hi there.. Welcome..l sorry your husband ended up here... And you as well - but it's a great place for support. I have to mimic David, my first thought was 10'weeks...?!!!! That's a VERY long time for chemoradiation - unless their doing smaller amounts... I was curious about the treatment course offered at MDA actually because they are supposedly the best. I'm thinking because there is bilateral node involvement this might be the reason for the ten weeks (the number of nodes probably also comes into play..) and likely the poorly differentiated status as well. however if it's poorly differentiated it's more sensitive to treatment so that's a plus - so hopefully the 6 weeks of induction chemo will kick the crap out of it prior to radiation.

The longest radiation term I've heard was 8 weeks, but that was on a young guy - 18 and I believe they only extended it because it was discovered 2 weeks into rads that he had bilateral involvement, so the rewrote his treatment to involve both sides and maybe only radiated the second side for the extra two weeks. Not sure maybe he'll pop in and clarify.

Is your husband HPV + ? Highly likely if it's a base of tongue tumor.. If so it does respond well to treatment.

Best of luck and hugs to you and your hubby- 10 weeks will be a crazy long haul. - tell him to bulk up now eat tons!!!! (healthy stuff) and if he doesn't want to be eating from a tube for the rest of his life, swallow swallow swallow during treatment. Even if he's using a feeding tube for nutrition, he should drink small amounts of lukewarm water, flat club soda - or anything - frequently - just to maintain his swallowing reflex!

Take care we'll be here to lend an ear.

Hi there Ana, Welcome to the best place on the net to get support and info. I too have not heard of 10 week rads treatment. Curious as to what the other places have said as well. Sorry you all had to come here, but you found the right place for support.

Welcome to OCF Ana! Im glad you shopped around to get the best treatment for your husband. You have found a great place here with all kinds of info and support.

Wondering about the treatment plans as well. Must be due to the nodes on both sides.

Best wishes with everything!

Hi Ana,
I know what you are going through right now as the caregiver. I'm so sorry you guys are having to deal with this. My husband only had the lymph nodes on the right side, but his tx was similar. You can see it in my signature. We only had radiation for 6 weeks, but it twice a day and a very high amount each time. It was hard, but we made it. You guys will too, but it will be hard. Kevin lost 56 pounds, but had it to lose. If Vince is not a bit overweight, the bulking up now is a good idea. Have him eat anything and everything.
Please keep in touch with us and let us know what's happening.
Blessings,
Kathy

Hi again folks, thank you for the warm welcome. Re: TX plans....

Opinion #1 Mayo: We went there, 30 hours after dx, to talk about robotic surgery. Quickly realized that's not an option due the heavy burden of my husband's tumor. That doc wanted to slice and dice right away...my husband would never swallow again.

Opinion #2a MD Anderson: Original tx suggestion by ENT surgeon was 6 weeks induction chemo, followed by surgery, no radiation. Left Houston back for U of C

Opinion #3 U of Chicago: 6 weeks induction chemo followed by 10 weeks chemoradiation. Clarification....it's not 10 straight weeks, it's 6 days on, 8 days off....so it's 5 weeks of actual treatment, with off weeks inbetween. As he's HPV16+, they expect the tumors to react very well. He was offered to also do a clinical trial, adding Everolimus (a kidney cancer drug)...the theory is it will make chemo even more affective. If there is at least a 50% reduction in total amounts of tumors, the field of radiation will be reduced...hopefully producing less function problems. Rad Onc is one of the IMRT pioneers.

Option #2b: Return to Houston, to meet the rest of the possible team. Husband's case has now been discussed at the tumor board, surgery not an option. Plan is, induction chemo, followed by chemoradiation, almost identical to U of C. Liked the ENT/Surgeon & Med Onc...did not care for Rad Onc at all. Basically told us not to do any research, ask any q's, just let him be the doctor. Several of the docs at MD Anderson knew the docs at U of C very well...had great things to say about them, said we would get the same level of care.

That was our first 2 weeks in Cancerville....or as my hubby says, at the Cancer Casino. At the end of the day, our only deciding factor was, where will my husband have the best outcome...and after doing our research, we firmly believe that's U of C.

Cheryl...thanks for the swallowing advice, that totally falls in line with what we've read, and heard from the speech path...its a use it or lose it thing. He's very concerned about losing function, so he's highly motivated. That said, I'm also highly motivated to push him as needed...I plan on feeding him like a goose being prepped for fois gras if necessary. Luckily, he's starting out ahead of the curve BMI-wise. Even though the tumor is big, covering 2/3rds of the base of his tongue...deeply invasive into the tongue...he still has great function, passed the modified barium swallow study with flying colors. We know the node business is challanging. That said, we're very grateful that there are no distant mets, nothing below the collar bone...otherwise this would be a whole different game.

So the team has been chosen, scatterguards are made, simulation done, first chemo scheduled for next Friday (downtown Chicago as the NATO summit stuff fires up...what could go wrong with that...arggg) and caringbridge site up and running for support and as an outlet for hubby. It's time to kick the crap out of this cancer.

One other thing I meant to mention....the doc at Mayo impressed on us that we needed to make a treatment decision very quickly, due to the nodal involvement...told us we had two weeks, made our heads spin. Surgeon at MD Anderson told us that we were lucky, we had plenty of time to make this decision. We breathed a sigh of relief, told him the guy at Mayo had scared the crap out of us, told us we had only two weeks to make a decision...he responded...that's about right. I guess it's all in the perspective. A