Hi. I'm Hillary and my husband, Jeff, was diagnosed with scc in one lymph node with unknown primary about 18 months ago. Had a modified neck dissection at that time but no radiation. Was not having radiation a mistake? Can't look back. In December 2005, bimonthly monitoring revealed a small (less than 2 cm) tumor at the base of his tongue. Biopsy in January confirmed it was malignant. A petscan did not reveal any spread of the cancer beyond the tumor on his tongue.

We got three opinions re: treatment and were totally confused. All said my husband needed radiation to both sides of his neck and base of tongue. One (Greater Baltimore Med. Center) said to add carboplatin and taxol. (Husband is deaf in one ear so cisplatin was immediately ruled out due to high incidence of negative effect on hearing). One (Johns Hopkins) said that he needed no chemo but if he was going to have any, the carboplatin and taxol combo was way too toxic and he should maybe just have the carboplatin or maybe just erbitux. The third (Beth Israel) kept changing their recommendation. First they said just radiation, then radiation plus unidentified chemo, and finally external plus internal (brachytherapy) but no chemo.

We were totally confused. (Wish we had found this board back then). Having to make a decision, we went with the cancer care center we felt most comfortable with - Johns Hopkins and the radiation (IMRT with a special Tomo machine), plus the erbitux. He's also getting amifostene to protect salivary glands. Jeff is nearly three weeks into it and doing pretty well. He just quit work. (He's a P.E. teacher and was feeling too tired.) Had a feeding tube put in before radiation started, but is not using it yet and hasn't lost any weight yet.

I am beset by doubts about whether we made the right choice of treatment this time. Everyone says you only have one chance to get it right. But doubts aside, we are doing pretty okay I think. Jeff is a good patient and religiously follows all the directions about caring for his teeth, flushing his tube, drinking water, watching his nutrition etc., and his spirits are good. Kids appear to be handling it better than I would have expected, despite preexisting anxiety disorder of one daughter and unusual sensitivity to all things medical on the part of the other. I am okay, unless I get super tired - like this past weekend when an unexpected visit to the emergency room (because Jeff was running a fever) kept me up until 3 a.m. The result was that I, who ordinarily never get sick, came down with the flu. So, I'm home sick from work, trying to stay away from Jeff, and typing this e-mail.

I'm grateful to have found you all. I know I will be turning to this board often as we go through this journey and hope I, in turn, can be there for others.

Hi Hillary --

My husband Barry was also treated at Johns Hopkins and got carboplatin and TomoTherapy-- he also got a PEG and never used it but that was the exception. He is now 6 months' out from end of treatment, has had two PET/CT scans -- all clear, no sign of cancer -- and we met with our RO (your RO, too I'll bet) and he was very pleased with his progress. We also were told that if Barry were starting treatment this month, rather than last August, he also would have gotten Erbitux and tomo, possibly plus carboplatin . He took the amifostine all the way through, but not on chemo days to avoid nausea. It was pretty hard but worth it, he has pretty good salivary function now. The carboplatin (given in 7 weekly doses) was a non-issue to him (his words). He had no surgery post-treatment, neither his RO or MO recommended it.

I think you made a good choice for treatment, Hopkins is one of the three top CCCs in the country and we found the staff to be almost universally caring and approachable. I think the ability to ask questions and get straight answers is very important -- so don't be afraid to ask them!

Our nurse says that, in her experience, the patients who are best at following the instructions for oral care etc. during treatment tend to do the best. So congrats to Jeff on being a good patient!

I will send you a private message in case you'd like to call us and compare notes -- we are asked not to discuss specific doctors etc. on the Forum.

Gail

Hi Hillary,

My husband was diagnosed November 2005 with stage 3 SCC in 1 lymph node unknown primary. No neck dissection, Dr said (if I remember correctly) if it had been found in more than 1 node he would have done it. He had 6 weeks of Carbo/Taxol, then 39 radiation treatments with 2 treatments of cisplatin/C5FUs 3 weeks apart. Your husband sounds like mine as far as caring for himself. Mike made sure he was ALWAYS well hydrated...he also had the tube which we are so thankful for even though he was able to eat (sometimes not much) throughout treatment. He also had ethyol and stuck with every dose but one when he had an infection, although he did get sick from it a few times. Good luck.

Hi Hillary,
My Dad just began treatments for unknown primary. He had a neck dissection first and the size of the infected node was 4 cm. They said it could possibly be two nodes but all others were clear. He is on Erbitux once a week and began radiation this week. They are radiating both sides and all other possible areas. He is also taking the Amofistine as is doing ok but of course we just got started. Keep in touch as it seems we are going through this together. My Dad was in excellent health prior to this and has never smoked.

Hillary, Hi. Wish you, Jeff and your kids weren't having to go through this. How old ae they? You are really going to need to be dedicated to keeping yourself in good shape because you've got a tough job! I don't think it is good for you to dwell on "only one chance to get it right". You are at a great Cancer Center and should be getting the best professional care. Just keep talking and learning and being proactive for Jeff. Hang in thee. Amy

Hi Gail, Sue, Jessica and JAM,

Thanks for the words of welcome and votes of confidence for our choice of cancer treatment center. I'm taking seriously all the advice about trying to keep myself healthy, but finding it easier said than done.

JAM used asked about my kids and their emotional well-being is a huge concern of mine. My oldest is 17, a graduating senior, who has been suffering from panic attacks for about 15 months now. She had her first attack a few months after Jeff finished treatment for his first round with this cancer. (Coincidence?) Anyway, we've been getting her help (meds and counselling), trying to get her in good enough emotional shape to make the transition to college next year, and she's been doing fairly well, experiencing what I assume are normal worries about her father's health, as well as her own, (i.e., if Daddy has cancer maybe I do too), but last night had her first mini-attack in a while.

As for my younger daughter, she's 14, and is a very self-contained person. It's truly hard to tell exactly how she is doing with all this. She's complaining about being tired seems to be losing interest in school, which she used to really like. But, then again, she is in her last year of middle school, with one foot out the door.

I'm just so concerned about how all this will affect my kids, I may sometimes be guilty of seeing more than is really there. After missing the development of the anxiety disorder in my eldest for a while, I don't want to overlook any emotional issues for them. P.S . Can you tell where my eldest gets her tendencies for anxiousness from?

Hillary,
I don't have any wisdom on the choices you were presented with and ultimately made. I'm brand new to this, having just posted for the first time earlier this week. I've got a stage 2/3 (depending on which doc I talk to) SCC tumor in the base of the tongue, Rt. side, too big for sugery. I'm starting radiation and Cisplatin chemo next week. I got my feeding tube last week in preparation.
I was interested in seeing that Jeff is taking the Amifostine, as they are planning on trying that with me. Apparently many cannot tolerate it but it sounds like he's doing ok with it?
Pretty much everybody on here has more experience and knowlege on this stuff than I do - I was only diagnosed a month ago. But I wanted to wish you and your husband well and hope to hear more about his progress. I'll only be about a month behind where he is in treatment. You'll find that most folks on here will offer the same, but you're welcome to contact me if you want to share notes or experiences.
All the best...
Steve

Oh my, Hillary, 2 teenage daughters, hormones flowing everywhere It sounds like you are on the right track by recognizing what fears the girls may have about Jeff-voiced or unvoiced. A good counselor-psychologist-listener will help them both. I have told our 14 yr. old grandson, who lives with us that John's cancer is a serious disease that we are all fighting as hard as we can. I have also told him how much it hurts me to see John go through the pain associated with the treatments and that it is indeed scary at times. I have asked him to help me[in fact have given him new assignments around the house to make him feel more a part of things, we've been dealing with this since March a year ago.] I have also warned him that John and I both may be short tempered or grumpy at times and that he is not to blame for that[unless his room is a wreck or homework is not turned in] We try to talk alot about what is happening in his life at school. Hope some of this helps. Amy

Hi Hilary, and welcome.

My entire family was with me when I was diagnosed. We were all in a state of shock. It was the first day of spring break and we were leaving for a cruise the next day. I had a senior in high school and a sophomore. My then 17 year old was the most self absorbed child you could ever meet. She was also my best care giver. My 15 year old wears her heart on sleeve like her mom and had to toughen up. She pulled away from me somewhat during my treatment, probably waiting for the other shoe to drop as I was. Three years out we have all survived and thrived and are closer than ever. DH was and still is my biggest champion and possibly pushed me a little too fast in my recovery but, hey, the cancer is gone so you're healed, right?

We had our drama scenes "Mom might be dying, could you PRETEND that you care?" and the "I am packing my cheerleading bag and getting out of here..." but we all survived it, and developed some new family traditions from it. My favorite? "FLIPPING" - Joining mom and dad in their room on the king size bed and watching TV together as a family, flipping refers to when my husband has control of the remote. This grew to include their friends, boyfriends, whomever was around and was the best therapy ever. Still is! American Idol and mom and dad's room is the place to be!

Best to your family in what you are facing,

Sincerely,
Lisa

Lisa...........American Idol and mom and dad's bedroom..............your house sounds like mine! My husband upgraded to a huge plasma in the bedroom in January and when Idol is on, they all come running. Good thing we have a big bed. Chris is our favorite so far.

Hillary, we are here for you and your family. I have 7 kids so know how you are feeling. Be straight up honest with them and it will work out. At times, they will even be there when YOU are in need. Kids have more strength then we realize.

Hi Lisa and Minniea,

Today was a not good ending to a not good week that began with the trip to the ER last Thursday. Jeff is officially beginning use of the PEG tomorrow and also starting to wear a pain patch. I am thinking that there is a bottle of zoloft somewhere with my name on it. I'm so angry at myself for becoming so stressed and tired that I caught the flu, letting down Jeff and the kids in the caretaker department, apparently adding the straw that broke the camel's back for my oldest who had her first anxiety attack in months last night. Feel like I have been stressed for 2 years now, starting with the date of Jeff's original diagnosis and continuing straight through to today.

It was very comforting to read your posts because it reminded me that this too shall pass. I can't wait for the day when I will have your perspective. You both sound like you are so strong.

American Idol is a huge hit in our house too, although unfortunately NOT with Jeff. The girls and I wouldn't miss a minute each week. (Lena is a big Chris fan! I like alot of the contestants this year.) Right now, it's one of the highlights of my week.

Anyway, thanks for your words of welcome and support. Tomorrow will be the halfway point for Jeff's treatments. One day at a time, I know we will get through this.

What good family stories. In the end it all boils down to Love and support-doesn't it Amy

I don't know quite how to begin this post. I know that even though I only introduced myself a few days ago, I felt the connection and support that all of you provide instantaneously. And I know that no matter how I try to lead up to what I have to say, it will come as a shock. I don't meant to scare anyone and hope you won't be upset with me for writing this. Still, I feel that I want to tell you all what has happened and I know you will be supportive one more time and after that I will have to find some other place in cyberspace to find comfort in addition to the comfort and support I am, thankfully, getting from all of our friends and family.

This past weekend, Jeff passed away. Yes.

I can tell you all what happened, but I still don't really understand it. He had just been prescribed a pain patch that was to give him 72 hours relief at a time. He used it for the first Thursday night at about 8 p.m. He slept well all night and was still sleeping at about 8 am when the kids left for school.

Some time later I went to check on him and he didn't look right. I tried to rouse him and he didn't respond. I called 911 and tried to follow their instructions re: CPR. The paramedics came and took him to our local ER where he was put on a ventilator. They gave me little reason for hope as he was completely non-responsive. We transferred him to Johns Hopkins the next day but his condition never changed. The people at Hopkins were wonderful, as always, but there was nothing to be done. He passed away on Sunday. My kids and I had time to say goodbye although I don't think he heard us in a physical way, I like to think he heard us with his soul.

I was told that a CAT scan showed multiple strokes. I was told that it was not clear whether the strokes caused him to stop breathing or whether the fact tha the stopped breathing caused the strokes. I was told we would probably never know what happened.

Even as I write all this I feel completely disconnected from it. The phone rings and I'm sure that it's Jeff. Then I remember, but the facts have no meaning. LIke waht has happened does not fit into any frame of reference that I have. But once in a while, it has some meaning, and then I am crushingly sad.

Okay. I've told you and I know this is not a grief chat board so I'm not going to go on and on. I'm sure those exist somewhere. I am not going to continue to haunt you all. I want to wish all of you the best of luck and to say thank you for your support.

Hillary

Oh my, Hillary, I have no words that can possibly do justice to what you are going through right now. Please do not apologize for posting about this here and please don't be afraid to come back here as you process this. I am so deeply sorry for your loss and will hold you and your children in my thoughts.

Nelie

Oh Hillary, my heart goes out to you and the kids. Please do not feel you have to leave. We will try to help through this. My deepest sympathies to you and your children.

Take care,
Eileen

Hillary, I do not have any words to comfort you during this horrible time. You and your children are in my thoughts and prayers...Love, Carol

Hilllary
The worst part of this forum is the sharing the grief that is so heartfelt.
We can only supply words, I for one would love to be there to give you a hug.
Within the past few months I have lost both of my parents and I know the pain that you all feeling, it numbs you to the core.
There is a saying that time heals, it doesn't really but time does take the razor sharp edges from the pain.
Please stay with us, we will try to help where we can..
You are more than welcome to e-mail me direct..
one day soon you will walk in the sun again
Love and Hugs
Helen

Hillary
The strength it took to write your post commends you. I am so sorry for your loss.

Marica

Hillary, honey, now is when you will need us the most. It's what we're here for so let us help you.
Love,
Minnie

I'm so very sorry for your loss Hillary. Please look within this forum for comfort as there are so many people here that care and want to help you. I will be thinking and praying for you and your family.
Michele

Hilary,

I am at a loss for words. We are always here, don't hesitate for a minute to return and allow us to help you heal in any way we can.

Sincerely,
Lisa

Thank you all for all your words, which help more than you probably think. Because they are in writing, they are there for me to read and re-read and have a certain realness and permanence at a time when everything else seems as unreal and impermanent as a dream. At the same time, being able to write back to all of you gives me a chance to organize my thoughts and express my feelings in a way that helps me process all of this.

Our friends have all been pouring through the house during the afternoon and evening, to pay condolence calls and give me their company and bring food. I talk and talk and talk and often even forget that I'm not at a party, like so many other parties we gave together as a couple. On some of our friends' faces, I see the same disbelief that I feel and they shake their heads and have no words for me. Others, are starting to look sad, which means they have started to accept the fact that this is real and he is not coming back.

I know I'm stuck somewhere in the land of denial, but I feel like something, the end of denial? is coming. I feel it. And it scares me because I'm know that once the denial part gone, it'll be gone for good and I'll be completely unprotected and will have to actually feel the full brunt force of this.

My girls are doing okay, I think. Julie and I can talk and we seem to be traveling a relatively similar path. Lena doesn't really talk about any of it. She seems more upbeat and outgoing than usual, in fact much, much more outgoing than usual. I hardly recognize her. I'm not really sure what it all means.

But, we are surrounded by friends and family. We are definitely not alone, for now. We are making it through each day. I guess I should be grateful for that, for now.

Thanks again for listening,

Hillary

Hillary
HUGS and more HUGS
I went through a shocking loss this weekend and though it was not related to cancer one of the first places I came was to this community. While we are all over the world and most have not met face to face I found over the last two years that this is a genuine place of compassion and support. You are so very welcome to stay as long as you ever need and there is always someone here to answer. Even if you go away you can always come back. If you want come to the green fields and lilacs thread and visit anytime you want and say anything about anything you care to say.
Peace and prayers Denise

Hillary, we just arrived home, so my thoughts and prayers for you and the girls, belated as they are, go out to you. I'm so sorry. Amy