Hello all,
My first post.
I have a late stage 3 tonsil cancer (HPV positive)that has metastasized into my neck lymph node. Initial doctor did not want to do surgery. Four weeks later doctor changes his mind. My second opinion doctor, who seems more thorough, always stated Chemo (Cisplatin) and radiation would be best. Doctor states that surgery may not even be needed. Both above doctors are ENT surgical oncologist.

Thankfully my cancer center oncologist started me with Erbitux.
I do not have insurance (currently not working) only a small savings for medical issues.
I did qualify for a reduced price from the manufacturer due to my income level. When I am cured I plan on writing a nice thank you to the manufacturer.
For most Texas state and/or county financial help you need to be less than 250% of the poverty level. Wife's job disqualifies us.

Also, paying the clinics and doctors up front has given me a 50% discount on the additional drugs and procedures during chemo, and my lab blood tests. I was able to get 25% off a CT scan for paying up front. The initial MRI, I shopped around and paid half of what most hospital imaging centers charge. My cancer center oncologist, bless her, waived her fees. She is my wife's doctor that I self referred to after my initial cancer diagnosis.

With Erbitux... very bad acne-like rash that started 7 days into chemo then subsided 2 weeks later. Very bad, bleeding, itchy, painful. Kept clean and used clindamycin topical lotion and took minocycline to prevent skin infections. Still have the rash but not as severe. My feet have shed skin after the 4th treatment and now after the 5th treatment the skin around my fingernails is beginning to fissure (use lotion). However, after the first week, my neck node was reduced in size almost by half. My tonsil after my 5th chemo feels much smaller because I can swallow much easier. It bleeds sometimes every couple of days. I am an allergy sufferer.

Radiation is next. I really plan on annoying my radiation oncologist with questions. Two of my main concerns is a cure and the most economical way to that cure. I have read that HPV positive tumors respond very well to radiation. I have read that an intensive course of radiation my not be necessary like in the case of other head and neck cancers that are non-HPV related.
My first appointment with my radiation oncologist will be Tuesday.

I'm trying to determine just what is the course to be expected. I really do not want 7 weeks, five days a week at $1000 dollars per treatment. Poor salivary glands ... poor savings account. Gamma knife , cyber knife, Intensity modulated radiation treatment?
Any advice from your own experience would be appreciated. Thanks everyone.
I'll write an update after Tuesday's appointment

Hi there okay are you being treated at a comprehensive cancer center ? Based on your information I'm thinking that maybe not. Normally at a comprehensive cancer center you will already have met with your radiation dr. And Erbitux is usually given in combination with radiation not before that I've heard of - this is standard - are they continuing it through radiation? Also cisplatin or carboplatin are the tried and true drugs of choice - as a chemo radiation, regardless of all this I did want to welcome you... and wish you luck.

I too wish you had consulted with a CCC before beginning any Tx. I'm not fond of Erbitux but I'm glad you avoided pre Tx surgery.

Re the HPV and less Tx, there have been discussions about studies attempting to lessen either the radiation and or the chemo for HPV+ SCC patients but to my knowledge no study has been completed so presently your Tx will most likely be the same as if you were HPV- meaning 6 to 7 weeks of 5 daily rads totaling appx 70 gys. If you do get more chemo it will likely be Cisplatin delivered once every week or 3 larger doses given appx 15 days apart starting with the 1st day of rad. IMRT is the choice of radiation delivery.

Have you been fitted for Fluoride Trays. If not see your local dentist quickly and begin using them.

Get your TSH check your next blood draw and record that number in case your thyroid craps out post Tx.

Eat all your favorite foods now. You will lose your taste quickly after the beginning of rad.

Do try and consume at least 2500 cals and 48 ozs of water each and every day during and post Tx. This is EXTREMELY IMPORTANT!!!

Try and add your own Signature Line soon. You can always add or change it as you go.

Keep us informed and do ask us any question you think of.

Welcome to OCF! Glad you have found our site to help guide you thru this.

Pay attention to your nutrition and hydration. That is one thing in your control. Every single day take in a minimum of 2500 calories and 48 oz of water.... more is even better! How easily you make it thru the treatments and recovery depend on you doing this every single day.

Best wishes with everything!!!

Welcome to OCF,

On the pay as you go plan, it really sucks to have to deal with "retail" pricing. I have a discrepancy in my billing which forced me into the whole world of coding and the crazy way the adjustments to invoices are applied based on various agreements and insurance schedules and such.

What I found in my case is the actual amount paid for service is between 5% and 10% of the "retail" price. I would be happy to share the common codes for radiation services and what I found are the standard Medicare reimbursement rates. So a $200,000 bill ends up closer to $20,000 of real dollars. Incredible as it sounds, that is what I am finding out thus far. Still not done but getting pretty close.

don

There are clinical trials with HPV reduction in treatment, maybe with a Erbitux, but outside clinical trials it's not recommended, but Erbitux is used for first line treatment in HNC, and Cisplatin is the gold standard. There is still much unknown about HPV oropharyngeal cancer, and appears there may be three different sub types, one which is more high risk. Also, for some reason, HPV failure rates are being seen after 5 years, in distant areas not normally associated with HNC metastases. while non HPV, levels off after 2 years. I had Erbitux for metastic cancer, with taxotere, last November with the same side effects. Sounds like Erbitux was used as induction/neoadjunt treatment, but usually chemo or a tagged therapy is also used as a radio sensitizer during radiation.

Since there have been no clinical trials on reduction of radiation, and we know that radiation is the thing that HPV+ cancers respond the best to, messing with the amount of it might be problematic. There is about a 30% survival advantage in HPV+ disease. Does that mean that you could reduce the treatments by 30%? Hardly. Nothing would be worse that to go through all this and find a year out from treatment it was back. Incomplete resolution of the disease is something that could be a result of lesser rads. No one knows. Asking for a reduction in treatment because of costs or statistics taken years after treatment will not get the doctors to agree to do something that is outside accepted clinical protocols. They would be setting themselves up for a huge liability if things went south, so would the hospital itself.

A Phase II clinical trial was completed at Fox Chase, and other institutions on treatment reduction, in qualified patents from their response to induction chemotherapy, Erbitux.

http://www.fccc.edu/information/news/press-releases/2013/2013-05-29-ASCO-Oropharynx-Cancer.html

This study was small, phase two, and will not post outcomes for a couple years. Even two year data will not satisfy most as 5 year survival is the standard period for reporting cancer free survival.

With great respect for the doctors doing this, I state that the criteria for selecting the people in the study is counter intuitive. We know already why HPV disease responds better. It is the radiation itself not the chemo. ( http://oralcancernews.org/wp/enhanced-radiation-sensitivity-in-HPV-positive-head-and-neck-cancer-2/ ) While chemo may be additive to the ultimate outcome, it is not the reason for the superior knock down of the disease. Several doctors that I asked about this also had the same question, that it seemed an usual criteria for selection given what we know. I should have said in my pervious post that no clinical trial with end outcomes reported.

That's what I thought...you meant no clinical trial with an end outcome was reported, not correcting that, but just wanted to add the clinical trial to the discussion since I mentioned hearing about an Erbitux deescalation clinical trial, not that I would have wanted, but seems a direction HPV OPC may be going in until proven otherwise, and like you said, takes years for the stats. I see the Gy was only 54. I had more than that to my lymph nodes. Thanks for adding some insight.