[quote=chu082011]

Thank very much for your comment. It help me to think about for my ideals.

Tks again and pls keep posting.
[/quote]

As a result of following many post by Kelly I have contacted UPMC and have been accepted to be part of a clinical study that involves Cyberknife and Erbitux. I should be going there very soon and will be there for 3-4 weeks.

If anyone looked at the video links I posted and watched the one that features Dr Lee (of Memorial Sloan Kettering)it can be seen how they prepair for and deliver radiation. Sloan Kettering does not use the Cyberknife method but their highly concentrated focused delivery (as pointed out in the video) seems very similar to the Cyberknife approach. I am curious as to what others think about and/or have experienced (pros and cons)with such treatment. I am going there to treat a recurrence which was treated with radiation about eleven (11) months ago.

Also interested in learning more about what to expect regarding Erbitux. I understand that the side effects are minimal compaired to Cisplatin which I had the normal and extreme difficulties with relevant to nausea and regugitating. So far I understand that Erbitux may cause a temporary rash.

Nocam

Yes, the marketing departments of the hospitals do their best to confuse the patients over what they really offer and how it compares to other hospitals. The actual doctors don't usually have veto power over marketing ideas (which is why you see Reiki offered in otherwise reputable hospitals). But facts are facts.
There is a factual difference between the IMRT in the videos you posted and stereotactic radiation (SRS or SBRT) but it does not usually matter except for getting radiation a second (or third time) with a recurrence. I discussed this about Dr. Lee's oversimplification in her video. Maybe you are getting SRS/SBRT under a different brand name but no amount of careful IMRT can do what SRS/SBRT can do. That's why Kelly and I had Cyberknife. Here's a primer:
[quote]Other Names for Stereotactic Radiation

There is sometimes confusion about the branding of equipment separate from the terminology of SRS or SBRT. Stereotactic radiation may be delivered by a number of different devices; brand name stereotactic treatment machines you may hear mentioned include: Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy. It is important not to confuse these brand names with the actual type of stereotactic radiation under consideration.
How Are These Treatments Alike?

Use multiple narrow radiation beams.
Target small, well-defined areas with precision.
Use immobilization devices or techniques that limit monitor and adjust for any movement during treatment.
Give high doses of radiation safely and accurately over just a few treatments (usually one to five sessions overall).
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Charm

Nocam

I'm answering the Erbitux portion of your post separately from the radiation question. Why? Because the radiation questions have universally accepted factual answers, documented by clinical trials and the laws of physics. But Erbitux is still open to discussion.
Reasonable people can and do disagree on the meaning of the studies done so far on Erbitux. Unquestionably, both the Bonner and the Extreme trials indicate that Erbitux is an effective treatment. Yet it's not clear that it is as good or better than the old platinum drugs. That is why there is a clinical trial being done. It's noble of you to be part of this trial. I am biased against Erbitux since they now know that it does not work at all for up to 5% of oral cancer patients and 40% of colorectal cancer patients but they did not know that back in 2007 when I had it.
Others here did have good experiences with Erbitux , so I'm pretty much the only voice of caution here. it sucks to be the 5% but the odds are with you on Erbitux.
Charm

I saw Dr. Lee's videos. I wanted a consultation with her, but would not see me. Charm summed it up about SBRT. Did anyone mention laser surgery, was possible? That I heard laser surgery leaves more options open in the future, like Reirridation, surgery, if needed. Good luck with everything.

PaulB

Sorry it took so long to get back to you. Since you were not permitted to see Dr. Lee did you see someone else at Sloan Kettering? No one has mentioned laser surgery. Is that something similar to Cyberknife and such or completely differant?

Charm

I have checked further and I was treated using IMRT. My only question now is whether or not it was done in the best way possible. I have heard that at some hospitals that do not specialize in certain cancers the treatment with physisist and all may not be as good. In the video link I previously posted (included below-Johns Story) from Sloan Kettering the doctor states (about 3/4's through the video) "Whats so satisfying to me during treatment we can see the tumor shrinking and by the end of treatment practically all patients we will see him or her having a complete response meaning no evidence of any tumor at the end of treatment". That statements seems very clear and not what I was told. As I mentioned, in a previous post, I was told at midpoint and near the end that nothing could be seen or determined for a few months after treatment was finished.

Nocam

As I mentioned in your threads and many others, the marketing departments of the hospitals are running the show. One reason I critiqued those video links you posted was that they overstated the ability of IMRT plus they made it seem like the extra scans and xrays to independently track the tumor size were just everyday normal way of doing business.
As you have discovered, it's just not so. But I don't think it makes a difference in the end result. Even if they "see" the tumor shrinking to the point of "complete response", that is not proof the cancer is really gone. The marketing departments and the complicit doctors play games by using complete response in two different ways: There is clinical complete response (CCR), which means looks good and there is pathological complete response (PCR)which means the cancer isn't there. It does takes months to know if there is a CCR and only time can tell if there was a PCR. I've been told I've had a CCR twice now. It's meaningless so don't worry about it.
Charm

Charm

As always, thanks for the feedback. It is really disturbing that marketing comes into play with cancer treatment. I can understand and accept marketing, to a point, with soap but not with cancer.

I would now just like to know if attention to detail was given to me in the same way that Dr. Lee has stated to be the case at Sloan Ketteting for the same. I suppose there is no way I can or will ever know. If I found the same attention was not given I would be very upset. However, I assume it no longer matters for what was done is done.


I see the link I mentioned was "BELOW"in my last post did not make it. If some one wants to see the video about Dr. Lee they can go back to, I believe, page 6 or I will gladly repost it here.

Charm

I would like to pass this past you to see what thoughts you might have. I have read that you have had radiation treatments (including Cyberknife)more than once.

I am at UPMC, you may have read that elsewhere, and came here for a clinical trial involving Cyberknife treatment with Erbitux which would be covered Medicare. Now that I am here I have been informed that I qualify for treatment but Medicare does not cover the treatment using Erbitux. Late today, before making arrangements to return to Atlanta, I was told that another trial (the same but without the use of Erbitux) could be done and would be covered by Mediaare. I am wondering what your thoughts are in regards to having Cyberknife radition treatment for base of tongue cancer with or without Erbitux. I guess having more radiation is one thing to consider but I was told that there could be damage to my lower jaw bone but it is not likely.

Thoughts from anyone will be helpful.