We are starting our journey to recovery

Hi tgcap,

Sorry you found us but it's good you did as well. This is a great site for info, support and encouragement as you begin your battle with the beast. You're in good hands at MD Anderson as they're the top rated comprehensive cancer center in the US.  I was Dx'd - Tx (unknown primary) N2b, MO Stage IV. Treated at Johns Hopkins, 30 rads 6 chemos, finished 4-24-13. Doing well. 1st post PET NED  

I won't sugar coat it... Treatment is brutal but you'll both make it. Follow the advice of your team. Do the best you can to keep your husband hydrated and nourished and be sure to take care of yourself as well! Manage the side effects before they show themselves (nausea and pain) and pick our brains for advice and tips to get through this. Start prepping his neck with a cream now before the rads start. There are many that are good. I used 'Special Care Cream" throughout several times a day (NOT BEFORE A RAD TREATMENT) and had very minimal burning and peeling. 

Positive thoughts and prayers

"T"

I've walked your path, I'm now six months out of treatment (SCC BOT S4 N2C HPV+).  I also went though the MD Anderson protocol, 3 rounds of Induction Chemo followed Eributux and Rads though at Baylor in Dallas.  My family Doc also missed my diagnosis (thought it was strep) by six months so don't feel like the lone ranger.  The bad news is the treatment is not a walk in the park.  The good news is it is very doable and, with the help of this group, your husband will come through it.  The VERY good news is our disease has an exceptionally high cure rate especially using the MDA protocol.

Any questions feel free to ask, there is an amazing wealth of knowledge here.  If you would like to ask anything of me on the MDA protocol feel free to send me a private message.

Good luck to you and your husband.

Joe Cortney

Dallas, TX

As John said, you have found the best...most supportive forum on the internet.  Lots of tricks and tips up our sleeves for getting through treatment (things the Dr.s....who have never been through treatment....don't think about).  This place has become second family to me, as they held my hand all during treatment and after, with encouragement, shared delight....and laughter, too.

Read the top thread in this forum....Super Thread....lots of ideas there for what you might need to start treatment....lotions and potions for his neck.....food ideas for when things get dicey once rads start.....Ask your Onc about Mugard to avoid mouth sores (worked for many of us).....

Most all of us had a delay between the first time we went to the Dr. and finally getting a diagnosis...and another delay getting treatment started.....that's pretty par for the course. 

You and your hubby are going to get through this.....a mile or two on gravel in this road of life.....and then back to pavement....

Keep close to this board, ask anything you want, somebody here will know something about your questions....and you don't have to wait very long for an answer.

p

tgcap,

Welcome to the H&N forum, no delays from here forward (bold statement)

I did not have any delays in diagnosis, treatments that is a different story.  As mentioned you have a good team, a good medical facility and good family.  While you might not think so, it will be over before you know it and you can get on to living life.  We are ready for any questions, all heavy hitters have already introduced themselves.

Best of luck, enjoy eating all your favorite foods and start gathering your preparations you should have (superthrread)

Matt

I'm not one  of the "heavy hitters" on this board but I can vouch for them , and they are the best ! You could not have found a better place to be if you are having to go through Head and Neck treatments . I have been to MD Anderson Houston and it's a great place if you have to be there . Probably the best in my humble opinon . If I can answer any questions about MDA feel free to ask away or private message me on here . Do you live close or will you need a place to stay ? My best to you and your husband . Peggy

peggylulu said:

tgcap

I'm not one  of the "heavy hitters" on this board but I can vouch for them , and they are the best ! You could not have found a better place to be if you are having to go through Head and Neck treatments . I have been to MD Anderson Houston and it's a great place if you have to be there . Probably the best in my humble opinon . If I can answer any questions about MDA feel free to ask away or private message me on here . Do you live close or will you need a place to stay ? My best to you and your husband . Peggy

Hey..., I've been riding my bike, watching what I eat, etc......, LOL...

tgcap said:

Thanks for all the warm thoughts

Glad my wife signed me up for this.  Starting treatment next week. Scheduled 3 rounds of chemo followed by 6 pr 7 five day per week radiation treatments.  I'm claustrophobic and get very anxious.  Any suggestions on how to handle the mask?  Appreciate any feedback.  Thanks for all the support. Great forum!!

during my radiation treatments.....it's a tiny little anti-anxiety pill, but it also helps with nausea from the chemo.  If they haven't already gotten you a script for it, ask the Oncologist for one.  I was really nervous the day they made my mask....I honestly didn't know if I was going to be claustropobic or not.  I wasn't when they made it...actually felt to me like a warm washcloth placed over my face.  However when it drys it's hard, and not near as comforting as a warm washcloth.  My Rad assistants cut eye holes in mine, and I'm sure that helped in not feeling so trapped.  Still....Ativan everyday about 30 minutes before rads, and I was dozing the whole 12 minutes it took to get the job done.

p

As John said, don't be afraid to ask questions chances are we can steer you in the right direction. I was diagnosed with a thorndat (no speel check) cyst and acid reflux. The reflux never got better so was sent to another ENT and was told cancer was having its way with me. They sent me to the Hospital at the University of Pennsylvania and here I am today. I've said it before and I'll say it again, doctors have a ??????? practice............. which means they are never perfect. The man upstairs is perfect, follow his lead. We can help with the obsticles.

      Jeff

This is the most wonderful site for cancer patients and caregivers, you couldn't get this support anywhere else. Where else could you ask a question or get support 24/7? Praying for you both.

Debbie