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.

Paul - Just an FYI, OCF is one of several funders of an RTOG clinical trial looking at replacing cisplatin with Erbitux keep radiation the same. This trial was started a long time ago, and should publish results next year. The idea was to use a less toxic chemo and see if the end results would be the same. Our portion of the trial was to pay for 100 (100 clinical centers in the trial) iPads that were custom pre programmed with a questionnaire that patients would fill out once a week. It looks at the obvious things like pain, nausea etc. but we also are looking a general quality of life questions too, that no one has paid much attention to. (Treating the disease and not the patient as usual is the norm too often). So we had a chance to piggy back on the existing RTOG with a new portion - the QOL questionnaire. While some people have referred to this one as something that is looking at "dialing back treatments" it really isn't dialing back the one that has the greatest long term negative impact, radiation.

Thanks Brian. Look forward to seeing the end results with Erbtux vs Cisplatin. I had both, but at different times. For a while, a few years back, I was seeing quite a few mono first lind Erbitux treatments, but not as msny now or maybe it's just my perception.

Thanks for the responses everyone. I really do appreciate your time.
The cancer care center that is helping me does not have an ENT on staff. My initial ENT surgical oncologist did not communicate with the center. So I have dropped that person and will use the guidance of my second opinion ENT surgical oncologist. The second opinion doctor has been more thorough and helpful. Plus the doctor has communicated well with me and the chemo oncologist and the radiation oncologist that I will now be using.
Even after losing a month of comprehensive treatment, the Erbitux has localized the tumors and has even reduced their size slightly. I should be starting IMRT radiation within 2 weeks.
Most likely 6.5 weeks of therapy and I am considering using cisplatin in place of the Erbitux. For all the bad things I have heard about the toxicity of cisplatin the written info seems to say that only about 10% of patients have problems with it. I am sorry that I do not have the source info for that statement.
Take care everyone.
Steve

Steve,

Not sure where you got your Cisplatin statistics but IMO 10% sounds more like the percentage of people that it DOESN'T cause problems with.

There are 2 practiced delivery methods for Cis; 1. I call it the Big 3 Bag Method in which larger does (bags) are given 3 times during rad; one before the first rad; one appx 15 days into the rad Tx and the last on the last day of rad before that rad and 2. smaller doses (bags) given once a week during Rad. The patients that seem to fair better, adverse side effects wise, receive the weekly method. The weekly method also does not seem to have a negative impact on the overall Tx success rate but I know there has not been any study concluding that. My observations come from this site only.

Hi Steve,

I had 6 weekly infusions of Cisplatin. It definitely kicked my butt but the side effects were manageable with drugs. I was fortunate that I didn't suffer many of the listed side effects. Long term, I have neuropthy in my toes. Get a baseline hearing test prior to starting and make sure you report any hearing issues immediately. Tinnitus is a possibility.

Positive thoughts and prayers

"T"

It's probably 100% likely you will have some sort of side effect from any chemo or targeted therapy, like Erbitux. To what extent may be different in everyone, and depends on the chemo, the dosage, rate of infusion, duration of infusions, if combined with another chemo and or radiation, general health, age, and comorbidities. I made a link to a study or paper on weekly Cisplatin vs 3 big bag Cisplatin, a few months back. From what I recall, the weekly seemed to have better overall survival, but higher degree of mucocitis than 3 bag, and less effect on kidney function impairment. I'll have to go back to find it.

In addition to baseline hearing test Mr. T mentioned, have a baseline TSH test for the thyroid, the creatine, GFR, for the kidney function, which they do or should every week before infusions, an eye exam, vision test, and testosterone levels.

I had the "3 big bag" Cisplatin and I guess looking at these post I was pretty lucky. Besides the extreme N&V after the first dose, nausea for a few days after the next 2 doses and the usually taste and lack of appetite problems and hair loss so far so good. As far as I can tell I have no lasting effects yet. I take that back, I get an occasional ringing in my ear, and I mean very occasional, maybe once a week for less than an hour. And I get a tingling in my left shoulder blade sometimes that the docs don't seem to think is connected to any of the treatment but it was never there before.

I can always count on you Paul for technical backup!

It takes so long to gain, and so quick to loose. I can't remember anything anymore. I also have a bad habit of using my email as a filing cabinet, and I have 14,000 messages lol, so I doubt I'll find the link. But it may be in one of my posts, I think lol.

http://www.ro-journal.com/content/pdf/1748-717X-7-215.pdf

Paul,

From my experience it only gets worse.

[quote=rosymonroe]I had the "3 big bag" Cisplatin and I guess looking at these post I was pretty lucky. Besides the extreme N&V after the first dose, nausea for a few days after the next 2 doses and the usually taste and lack of appetite problems and hair loss so far so good. As far as I can tell I have no lasting effects yet. I take that back, I get an occasional ringing in my ear, and I mean very occasional, maybe once a week for less than an hour. And I get a tingling in my left shoulder blade sometimes that the docs don't seem to think is connected to any of the treatment but it was never there before. [/quote]

It is from treatment and some from inactivity during treatment. The tingling and numbing is usually from vascular constriction and nerve impingement. Scalene muscle entanglement with the brachial plexus is instant relief for shoulder pain, numbness and tingling in limbs.

Cisplatin x 3 here. Tinnitus got worse. No n & v that I can directly attribute to the cisplatin. Chemo was what I most feared going in and it was pretty anticlimatic. I was given the choice (cisplatin or Erbitux) and was told the "book" says cisplatin kills it every time. By "the book" I think he meant conventional wisdom and by every time I think he meant it was very successful. For me, he was right.

I had TPF Induction Chemo, which is high doses of Cjsplatin 160mg, Taxotere 160mg, and 5-FU1600mg in five days. That put me in the hospital for 270 days.

For my 2nd chemo, last October, I had Erbitux, and Taxore, which Taxotere was cut out the in the 4th week, due to worsening of the preexisting neuropathy, and was hospitalized for three days for blood transfusion due to low hemoglobin, dehydration.

Hello everyone,
Thanks for the article Paul. According to the research article the Cisplatin once every 3 weeks was actually better in terms of less toxicity and adverse side effects than the lower dose every week.

In discussion with my Chemo oncologist, she wants to try a less concentrated (75 mg/m squared) once every 3 weeks approach during radiation. The therapy should begin next week, still waiting for the phone call from my Radiation oncologist.

Take care,
Steve

Good luck with treatment. Watch out for constipation. Cisplatin and/or anti nausia drugs really screw up the whole solids processing. Have a piece of paper by the medicine stash. Write down date, time, and drug. I found it very hard to remember what I took and when. Strap yourself in tight, the next 14 weeks are brutal. Have a driver on call at all time, you might not need them but its good to have. For me chemo days, driving was impossible.

But for me, 9 month out, the ligering side effects are just a mere inconvience. Although having to get only mild chicken wings at the bar is not quite the same.

I had 8 weeks rads with the 3-bagger of Cisplatin. The Cisplatin kicked my butt everyway but loose. I lost 38 lbs in less than 90 days.

But - I drove myself to the hospital every day, even though I had to be very alert, looking for a place to pull over and call for my cousin, RALPH, if I ever went over that thin line between feeling like I'll lose it and actually losing it. Oddly, I never lost it on that drive, despite the fact that it was 24 miles each way.

I've experienced neuropathy with every bout of every form of chemo I had. I was warned to be alert to tingling in my toes or fingers and never experienced that. HOWEVER, I did get some dandy neuropathy in my toes, only because it feels like my toes are being crushed by a shoe that's too small, that's what I thought was going on. Surprise! It's annoying, but not the end of life as we know it.

As an old cannon-cocker and paratrooper, I'd lost a good deal of hearing range already. My tinnitus is always (still) around, but it comes in handy at night because when I tune it IN, it sounds like sitting at the edge of a clearing in a forest, complete with katydids, tree-frogs and crickets. Very relaxing!

Black clouds and silver linings, eh?

I've had some loss of fine resolution of feeling in my fingertips, but it's minor. Still, I have to be careful about holding folding money and trying to carry on a conversation, the paper slips out when I'm not concentrating on it, and I never know it.

So far, no damage to my "grin" muscles, thoug...