Hello all;
I was diagnosed with HNSCC on May 15th. Had robo surgery at a leading med center on the West Coast on 6/17. The removal of the cancer(s) included my right tonsil, 21 or so lymph nodes on the rt side of my neck, a portion of the base of my tongue on the right side, numerous small lesions and a large lesion that is effectively the width and length of an upright can of span sliced to a thickness of approx 0.6 inches. All the margins came back clear; however, one the primary cancerous lymph node exhibited an extracapsular extension, which, according to the Rad and Chem Oncologists requires chemo in addition to rad treatment to the right side of my neck and throat. They state that cisplatin is the gold standard but I find the 10 - 29% occurrence of side effects too big re: potentially life limiting for my purposes. I pushed them to utilize cetuximab (erbitux) instead in conjuction with Rad Therapy. They were reluctant but ultimately agreed. I begin RT/CT in two weeks. Do any of you folks have experience with RT & Cetuximab following surgery. If so, what are your thoughts for this approach to therapy?
Welcome and sorry your here. First of all, Do you know if your cancer is HVP related or not. They should be able to tell you. Most Tonsil or base of tongue cancers are HPV involved.
I had Cisplatin, others Carboplatin or Erbitux. I don't think it has been statistically proven yet, but My RO did not favor Erbitux with HPV related cancers. His opinion was Cisplatin first, Carboplatin as fall back. All of theses have side effects but I do not believe anyone could tell you which side effects you will have and how bad they will be. Cisplatin may cause hearing loss. I think it is about 20% of the time. Luckily I was in the 80% and I did not have this problem.
I am no doctor, but "gold standard" is a treatment that has proven to very effective for HPV related cancers. Carbo and Erbitux have been trialed against Cisplatin. Carbo yielded similar results. I am not sure if the Erbitux study is done or what the results have been. You might get some strong opinions either way.
Cisplatin is rough, especially the 3 big bad methods. That what I was given. However I was in pretty rough shape and had to cancel the 3rd dose, which is common. Weekly doses is an option you and your docs should consider.
Over the past 3 year of being on the board. Cis has been the most popular but carbo is gaining ground. I believe carbo has less side effects.
Good luck with the treatment. It is brutal, but doable. Post often and ask questions.
What benefit do you expect from Erbitux alone? Cisplatin and Erbitux serve very different purposes.
Welcome to OCF. Im sorry you have a need for our group but glad you have joined. We will help you with info and support to get thru your treatments.
It sounds like you are a very well educated patient and able to be your own strong advocate. Thats excellent!!! Im glad you research your illness and the appropriate treatments. Knowledge is power and can only help make this easier for you.
On the main OCF pages you can find tons of info about both Erbitux and Cisplatin. Please understand that our group is made up of patients/survivors and caregivers without medical training or backgrounds. We can speak from personal opinion and what we have seen others go thru but as far as giving a credible opinion on which chemo is better, we simply arent qualified to speculate. Recurrences can happen regardless of which type of chemo. It could be any number of things that can trigger it. Unfortunately our type of cancer (SCC), chemo alone (no matter which one) usually will only shrink the tumor, not completely eliminate the SCC.
Im hoping you opted for the smaller weekly doses of the Erbitux. It is much easier for most patients to tolerate than the 3 "big bag" method. One commonality Erbitux patients have is the bigger the rash, the better the chemo is working. This can be pretty uncomfortable, have the itch cream ready!
As I tell all new members who are getting prepared to begin treatments, focus on what is controllable... your intake. Prior to starting, eat all your favorite foods if you are able to. Especially spicy and hard to eat things like steaks, ribs, Mexican foods, etc. You dont want to go into this having cravings so eat now. Dont worry about gaining weight. Most patients lose significant amounts of weight during their treatments. Usually the doctors have a goal of no weight loss (even if the patient is overweight). By losing weight, it means they arent taking in enough calories. Even 2000 or 2500 calories a day isnt enough for some patients, they need 3000 or more. This higher intake must be done every single day. Those who skip a day or two here and there quickly fall into a viscous cycle of playing "catch up" and "tomorrow" when they are supposed to "do better" never seems to happen. I was one of those and ended up hospitalized for malnutrition and dehydration several times. You can get extra hydration a few times a week in the chemo lab with a prescription. This will instantly make you feel better so I would definitely recommend getting that script.
Try to line up some drivers to help get you back and forth to your treatments. The American Cancer Society has a volunteer driver program that might be available to you. Anyone who offers to help you, let them know when the time comes you will contact them. Write down their name and number so your caregiver can reach out for help if they need a hand. There are a million small things that can add up to making your treatments and recovery much easier. Even caregivers need help to get a break once in a while.
Prior to starting or any surgery, you should have flouride trays made for your teeth. Any teeth that arent in the best shape should be pulled now as there could be problems doing so after rads. Also strict attention to always being diligent with brushing and flossing your teeth several times daily is very important. A waterpik is a great tool to help get between your teeth.
Hope I didnt overload you with TMI. We are here to help and answer any questions you may have.
Best wishes!!!
Cisplatin based treatment is still the standard with radiation for first line treatment with oropharyngeal SCC, according to NCCN guidelines, so that includes Carbopatin, which I had also, but Cisplstin is preferred.
Erbitux was initially used for colorectal cancer back in the early 80's, the drug company had some problems approving by the FDA, and if you recall, Martha Stewart went to jail when everyone was dumping their stocks. Anyway, it was approved, new drug company too. and in 2006 was approved for HNC for recurrent and metatastic cancer. Then around 2011 it was approved for first line treatment in HNC, but still Cisplatin is preferred outside clinical trials.
There was plenty of discussions here about Erbitux a few years ago. It was
popular then, but I don't know of many that are having it recently as first line treatment for their initial cancer treatment, unless it was with induction chemo, after induction as concurrent treatment, maintenance chemo or palliative care. A few I know, including myself, had recurrences after Erbitux, but that can happen with other type treatments too, but makes you notice more after hearing negativity,
Erbitux doesn't work in 5% head and neck cancers, from what I heard. For colorectal cancer it doesn't work in about 40% of patients, but they have an assay that checks to see if they have the wild-type KRAS gene, which it works with. If not, they may not get the treatment. For head and neck cancers this tedt isn't used or works. They have or are still working on a drug that helps with Erbitux, a monoclonal antibidy, drug resistance.
There was an article from MSKCC to the Journal of Clinical Oncology a few years back, about holding off on replacing Cisplatin with Erbitux since it had some disappointing results, and the trial comparing it to Cisplatin wasn't completed yet.
I had Erbitux, also with Taxotere, and yes, it was easier than TPF Induction Chemo, but is not without side effects, which include the notorious rash, as mentioned, itching, which is an indicator it working, but not always, itching, low red blood counts, hand and foot syndrome, conjunctivitis, etc. I also had weekly Carboplatin, and that was easiest of them all, at least for me. No chemo or targeted therapy has no side effects, they all do.
Erbitux is usually given by a loading dose of 400mg, the first week, and 250mg every week thereafter, along with Benadryl, to help reduce allergic reaction, which is also a concern with the initial infusion, along with heart attack, in rare cases, so they monitor you closely the 1st and 2nd week when they mostly occur, and one should let them know right away of anything unusual.
You don't mention HPV positivity, which would be beneficial with oropharyngeal cancer, but doesn't sound like it is due to the extent of the cancer? I heard Erbitux should only be considered with HPV, but could be wrong.
Good luck, and welcome.
To all:
Thanks for the replys. There is no such thing as Too Much Information. I believe that I should not continue to maintain the conversation in this particular part of the forum and will study the other forum offerings to see where to continue best. I have already had the surgery; already had all the dental treatment required before Rad Treat. Thanks for the feedback.
The reason I searched until I found this forum is because of the wide range of side effects concomitant with each of the chemo drugs available. After searching out and reading every study I could locate I quickly came to the conclusions that Oncology Doc's (bless their hearts) consider even a two month extension of life a victory. Their definition of victory and mine are not the same. Several close personal friends are doctors (none oncologists - though all but one are surgeons) and ER / Critical Care nurses. None stated they would do Chemo should they be required to make the decision (of course, none have cancer and bravado often disappears when the cannons first roar).
The more I studied the more I came to believe that I needed to speak with those that had sat across the poker table with Cancer and Death. I believed that only in discussion with them would I gain insight into the wisdom they had each gained going through their individual processes.
I know no other person can make any decision for me but I do know each can contribute to my efforts to come to grips with my condition and with the decisions I have to make that will possibly effect my longevity. Again, I thank each of your for your shared insight and thoughts regarding my questions.
The problem with the Erbitux is that there is not an agreed-upon test before administration that it is the appropriate drug for you. They're working to find one, but right now what they know is that there is a correlation between a first cycle rash and improvided survival. You might want to discuss that with your doctors - what to do if you don't get the rash. Erbitux doesn't always work, platinum-based chemos don't always work either.
Best of luck with whatever path you take.
Maria
Yes it is such a sad state of affairs that we are reduced to making a decision regarding our health (therefore potentially a life limiting decision) based on the potential side effects of Chemo drugs that would likely not be allowed into the medical world for any use but treating cancer. A 3% likelihood of heart failure associated with Erbitux is a serious decision. The likelihood of neurological damage (irreprerable) with Cisplatin I have yet to see expressed except that it is less than 10%. Neither is a welcome choice which is why I lean towards not doing any chemo and undergoing rad treatment alone. My wife (of course - I would beg her to do the same if the shoes were reversed) tends to want me to submit to chemo. I still have two weeks to decide and Lord knows it is akin to unraveling the proverbial Gordian Knot.
I have read here and heard in a talk by a radiation oncologist that chemo softens up the cancer so the radiation is more effective. Someone will probably clarify this for you.
I had cisplatin and taxol for ovarian cancer nearly 20 years ago. I lost minimal hearing and suffered some peripheral neuropathy in my toes which I feel only when I am very tired.
Did you find out if is HPV related?