Hi Michael,
I wanted to reply to you earlier today but simply did not have the time. I think one of your problems is that you have seen so many doctors at so many facilties that your are functioning on information overload. To not do anything is absolutely foolish and no dr is even suggesting it.

I am glad you have come out of the the 'pity party'. Don't think that is where Seth wants you and if you think about it, if the shoe were on the other foot, you wouldn't want that either. You guys got a great lodge to run to now is time to get you back to healthy and on with your lives.

I would suggest, unless RO insists otherwise, to take your surgeons advice and have neck dissection and tonsil removed, followed by rads. I have had two neck dissections and there are almost no discernable scars. The trick is to have the best plastics guy available. Operating on eradiated tissue is bad especially recently eradiated tissue. I'm not medical, but I would be surprised if you still didn't need surgery even after radiation and chemo so would suggest you follow surgeons first suggestion.

I have always opted for surgery.I want this thing out of my body ASAP before it metastisis to someplace else. So if it were me, I'd be in recovery right now. Neck disections are not that bad, especially if they don't have to cut any muscle. I've had two and stillwear dresses with shoestring straps so your should not have to worry about disfiguration from neck dissection.
Radiation is the worst part of the treatment and may knock you on your back for a while. It also has some nasty permanent side effects like lack of saliva.

I think you need to pick the treatment center with the doctors you most trust ASAP rather than looking at several more options. If it were me, I'd get the surgery yesterday and move on to radiation in 6-8 weeks.

As to your question will they get it all the first time, who knows. That is certainly no reason to not not have treatment. As to worrying about if you will have a reoccurence, I see no reason to dwell on it. As Brian so aptly pointed out, we can get run over by a truck just as easily. If you will read my signature, you will find that I did indeed have a new cancer after 4 years of being cancer free. Not a reason to give up. Had surgery and back on track 8 weeks later.

We are survivors here and will help you through this. Get your treatment started NOW and stop looking for the miracle cure. Unfortunately at this point it still does not exist. You got a lodge to run and Seth is depending on you, so let's get you better ASAP.

Take care,
Eileen

I'm sure you're right about the uncecessary delays.

Now I feel stupid for cancelling today's surgery.

I had direct instructions from a family friend who is a Duke trained oncologist to avoid surgery at all costs. He said the scarring and blood vessel destruction will make Erbitux (he alledges my best option for survival) not function. He's been practicing for 24 years and I took his advice.

Thanks for the feedback and kind words.

I showed your note to Seth and he agrees with you. :-)

- Michael

I'll let you know what the tumor board say's tomorrow.

Also I was wondering about the other implications of having the MRND now.

If we can rid me of the cancer now, doesn't it make better sense to save that in case of a relapse? Also, the nodes themselves might prove useful in dx. any future return?
(I guess next time (if it returns) I want to catch it early...BEFORE any nodes are involved!)

Don't feel silly for cancelling, Michael. YOU are in charge of your cancer treatment and must feel confident with your decisions. In my case, the more info I had, the lesser the fear I felt. You're doing well - I believe you have a better grasp on the detail than I did at the beginning of my journey. Love from Helen

michaelii
i am 2 and a half years out of treatment, yes we all have battles we must face but then again who dosent,i finished treatment in dec of 2002 and went back to work the first week in feb, with me it was my will to get back on my feet and the trust i have in the lord that got me thur it all and something that really got me one night at the dirt track races a elderly man can up and set down by me and asked me what kind of cancer i had i told him and he said well if it is of any help he said he had went thur the very same thing in the late sixties he was healthy and very much alive, i questioned him about several things and one of them was would i ever get over all that was done to me his reply was why would you not he explained to me that he had battles in the first few months but it all got better for him, and with the lords help every one who goes thur it will get better in there time, chin up and chest out it really does get alot better but you have to belive in the lord and belive in yourself, may god bless you and guide you thur it all

Listen to what your gut tells you and find a team that you have confidence in. Erbitux is still a relatively experimental drug, especially for head & neck cancers. According to the manufacturer, it is only indicated for metestatic colorectal cancer at this time. They have recently completed a phase III clinical trial for efficacy for head & neck application on 424 patients (in conjunction with radiation). An additional 104 with Erbitux alone. They are submitting an application to the FDA to add the H&N indications for use.

From AP, June 8, 2005 "He estimates ImClone will be able to sell Erbitux for head and neck cancer in the United States in the second half of next year, which will add $18 million in revenue in 2006 and $59 million in 2007. Reddoch estimates that Erbitux sales will grow 47 percent next year while they will accelerate 41 percent in 2005. (Maybe Martha dumped her stock too soon)

In the latest announcement, ImClone said data showed that when Erbitux is used in combination with radiation therapy, it prevents the spread of head and neck cancer more effectively than radiation therapy alone."

It is being treated as an adjunct to radiation and the outcome data would appear similar to Cisplatin.

Historically, head & neck cancers have never responded well to chemotherapy alone and are typically used as as adjunctive treatment.

The single treatment modality of Erbitux has only been tested on 103 advanced SCCHN patients. No other data was offered.

See: http://www.genengnews.com/news/bnitem.aspx?name=554150XSL_NEWSML_TO_NEWSML_WEB.xml

Erbitux shows great promise, but so did Iressa (see http://www.medicalnewstoday.com/medicalnews.php?newsid=26352 ) which has been pulled for general use for not meeting the FDA's efficacy expectations (the placebo performed better). Personally I think the the future of cancer treatment lies in genetic engineering, such as monoclonal antibodies (which is what Erbitux is). Are they really there yet? - do your homework and ask the tough questions to the oncologists.

I had radiation and chemo and I am 27 months cancer free and have most of my salivary function back. It was advanced stage and I had no surgery. But the surgery I could have had would have been very extensive - 14 hrs on the table and serious quality of life issues later. My entire team was unanimous that my outcome would be slightly better with the treatment modality I went with. If they told me the surgery would make an improvement in my survival odds - I would have gotten it in a New York minute.

Maybe you're a candidate for Proton Beam Therapy

See: http://www.llu.edu/proton/patient/sites.html

I guess I just have this inner fear of delaying treamment another week.

I feel my "symptoms" getting a tiny bit worse everyday, slight sore throat, ear ache, etc.

Sometime my low self-esteem takes hold of the paranoia and zoom...I have a meltdown.

When everyone asked me a week and a half ago, "well, you feel ok, don't you" I honestly responded, "Yup, no symptoms at all other than the FNA results"...now I am getting "symptoms" and am worried I made the wrong decision.

But, either way, can't go back in time, if I could I would go much futher than that! Back to when I was barely Stage I, and have it dealt with them.

So, I'll present to the board today, and let you all know their recommendations.

Thank you all!

Hi Michael,
My name is Minnie and I was diagnosed with Stage IV cancer in my left lower jaw in April of 1003. I had surgery to remove that lower jaw and replace the jaw bone with a bone from my lower left leg. I also had the neck dissection along with radiation treatment. Two years later my life is very, very good. It's not the same and it never will be but I still thank God every day that I am here. My old life and my new life are equal but different, if that makes any sense to you. The process of grieving and saying goodbye to my old life was very difficult at times but I worked my way through it and just in the last month I feel like I have exited that long tunnel!!
I am in agreement with everything Eileen wrote to you. She has given you excellent advice.
Please know that while this is the hardest challenge you will ever face, winning this challenge will bring you the biggest rewards you will get in life. And LIFE is the keyword here. It is amazing what the human spirt can adapt to, what we can handle and cope with physically. You will learn about yourself in the next few months then most people learn about themselves in a lifetime.
Minnie

Michael,

Please keep us posted. We have all been in your shoes...inundated with options and having to figure out which is the best path. Check out the book "From this moment on", by Arlene Cotter. It's a book for people recently diagnosed with cancer and helped me breathe and stay focused and calm. It's not a book on cancer....it's a "help you deal with your feelings" book.

One thing, I just wanted you to know, I also had ear pain prior to surgery. It was gone immediately once my tumor was removed. Not trying to sway you towards surgery, just saying it's a good possibility the ear pain subsides as treatment progresses.

Best wishes,
Jennifer

Michael,

In my opinion, you do not want to save anything for a recurrence. One of the major ways this cancer spreads is through lymph nodes. If they are not there, you have made it harder for the cancer to spread. You do not want to save radiation therapy for a recurrence -- it is the very treatment that may prevent a recurrence in the first place. Of course there are no guarantees, no matter how much treatment we have had, we are all at risk for recurrence, but you are much better off being aggressive right from the start. There is no question that treatment is difficult but we have all survived it and you can too.

Good luck.

Barb