Charm

I understand you are in recovery and I hope your recovery is going well. When you are up to it and if you have any thoughts about it all I would like to add this. I have been told I can have the clinical trial without the Erbiyux but as soon as radiation is finiished and I get back to Atlanta I could have the Erbitux there. If I was having the Erbitux as a part of a clinical trial it was to be delivered intermittenly. I was told that having the Eubitux done some days later could still offer some benefits for it would still interact with the radiation which will be actively working for some time after receiving radiation.

It seems to me that having a clinical trial without Erbitux and receiving the Erbitux some days later by someone else defeats the purpose of the clinical trial. I am suppose to start radiation treatment tommorrow.

Thoughts from anyone will be helpful.

Nocam

My opinion (I am not a medical doctor and so my opinion is not to be mistaken for medical advice) is that Erbitux as a single agent chemotherapy for HPV+ patients, it is not effective. Based on conversations with my MO who had first adminstered Erbitux to me and the fact that he will no longer prescribe or administer Erbitux as a single agent chemo due to his patients getting recurrences, my bias against it is even stronger than ever. So I personally would not get Erbitux ever no matter what but ask for carboplatin. The radiation with CyberKnife alone sounds very good especially since Medicare covers it. I am on Medicare now for this second round of CyberKnife and it is my understanding the Medicare will pay for both the CyberKnife as well as the Carboplatin chemotherapy. After all, there is no question that the platinum based chemos work.
In your other post, you mention the dangers of re radiation, and in light of the fact that you feel that in the past you did not get state of the art treatment, I should caution you that in my case, (as I posted under the Third times the Charm thread), a whole team of radiologists and physicists spent two weeks plotting out my radiation field and dosages after overlaying the fields of the prior two radiations (the first Cyberknife TX and the 40 IMRT TX) so that they could do as little damage as possible and reduce the risk of necrosis.
I got that explanation only when I questioned the amazing amount of bills sent to my insurance company.
But then this was a third round of radiation and this would be "only' your second.
Ask them how many GY dosage each session and did they overlay the previous IMRT radiation fields you had to miniminze damage. So much depends on our doctors.
I hope this works out for you
Charm

Hi, I just felt the need to tell you this. My father had throat cancer and received Erbitux when he could not tolerate cisplatin. He had an allergic reaction and died within minutes of receiving it. Recent studies indicate that tick bites cause a reaction when given Erbitux (studies have shown the southeast region of the US has 20% to 25% risk of an allergic reaction compared to the overall risk of 3%). He lived in GA his whole life and had many tick/chigger bites. I am posting on my mother's account. Thanks

John's wife and Charm

That is really frightening information about the Erbitux. I wonder if I should refuse for it to be used on me.

Charm

I saw you mentioned that you were being given Carboplatin this time and it sounds like there was nausea. Was the nausea worse than with Erbitux? I wonder if I should ask for Carbonplatin instead of Erbitux. Whatever I am given will be given in Atlanta when I return and not given in Pittsburgh.

Are you definitely having Cyberknife? I thought I was having Cyberknife but when I noticed that the equipment looked different than what I had found by Googling I ask about it. I was told that I was being treated with a linear accelerator. Upon further inquiry I was told it is IMRS which does what Cyberknife does and more. Are you familiar with the IMRS approach?

I have not ask about the Gy's but will try to ask today.

Nocam,

All of the current radiation delivery platforms being used now use a linier accelerator to generate the radiation beam. It is how that beam is delivered that is different (not sure about proton beam though).

The operative word in your treatment is "Stereotactic radiosurgery" which is what you are getting. This is where you get a very precise blast of radiation (up to 10gy) in a continuous beam each session. The machines used to deliver this type of treatment have different brand names given to them by their manufacturers; Cyberknife is one of those brand names.

If you notice during treatment your machine gives you a constant hum whereas the IMRT goes on and off. Here is a link to the page that explains it at UPMC;

http://www.upmccancercenter.com/radonc/radiosurgery.cfm

If you have seen my posts you may know that I am always more interested in the radiation I am getting and on what platform than the chemo side. Chemo is only a small part of the treatment and the radiation caries the biggest load. So my opinion would be to use the platinum based chemo�s if you are unsure about the Erbitux. The Erbitux did not bother me and they were fairly happy with my results, but then again I have no idea what made the most difference, radiation or chemo.

Thanks Kelly!

I just returned from my 3rd of 5 treatments. I ask and was told I am receiving 8.8 Gy per session. I ask if they did an overlay of the IMRT etc. nd was told they did not. The only thing used was the current Pet/CT for determining the treatment.

If you want to be aggressive, use the Carbo! I (personal opinion mind you), would not risk only doing Erbitux because you might be nauseous. They have meds for that. You have to hit it with your best shot!!!
Kathy

I am back in Georgia now and waiting for Chemo to begin. I guess I will go with Erbitux and hope for the best. Not sure yet how often I will be given this stuff but will report back when I learn more.

As I understand it the unit that was used to give me the radiation is called TRILOGY and does more and better than a Cyberknife unit. I was told this unit as well does not permit seeing what is taking place with the tumor during treatment and a patient must wait 6-8 weeks for a pet scan before knowing more.

Since returning home last Monday I am experiencing a lot of bleeding. During the day it seems mild but at night it gets heavy. I assumed it was because I hack a lot trying to clear my throat but now I am not so sure because I am trying to keep hackingto a minimum. Does anyone else have this kind of problem from radiation? Tonight I am goingto try a humidfier and see if that helps anything for dry mouth is a more serious problem at night.

Make sure you discuss the bleeding with your doctor. A little bleeding can be normal but this doesnt sound right. Not every day, a couple times per day.

A PET scan should not be done until 3 months post radiation. PET scans are known for false positives. Having one only 6-8 wks after finishing it has a very high chance of showing inflammation which will appear as 'activity' and would be interpreted as a positive scan.

I have not heard of TRILOGY before. Was this done at a major cancer center? Is this something new? Are there studies attesting to this being better than cyberknife or was this someone's opinion?

ChristineB

Thanks for responding! The treatment was doneat UPMC and what little I initially understood about the TRILOGY System was explained to me by Dr. Heron at UPMC. Below is a link to more info about the system and its use at UPMC. I have heard mention of Cyberknife often but I was almost certain something differant was being used on me because it did not look like a Cyberknife unit I was seeing from a Google so I ask. I have seen mention Cyberknife a number of times and wonder if he is familiar with this system.

I am very concerned about the bleeding. I have mentioned it to the RO locally but so far she does not seem to concerned.


http://www.upmccancercenter.com/radonc/trilogy.cfm