I made previous entry to introduce myself at intro site.
I have been recently diagnosed with SCC 3cm base of tongue, 5 cm left neck lymph node.
UAB @ Birminham approached a clinical study with me. The clinical study (in Phase II) is 3 weeks full dose cisplation/docetaxel followed by 6-7 weeks concomitmant docetaxel/radiotherapy with amifostine injections. Last two weeks of radiation would be twice a day.
UAB conventional treatment would likely be IMRT radiation with weekly cisplation/taxol chemo.
My questions:
Anyone out there participate in a clinical trial and how did you decide?
How do you decide if IMRT is the way to go? My understanding is that there is good and bad with it. Better radiation control but may miss getting all of cancer. FDA has approved machinery but application of the radiation has not been standardized.
Anyone know how long IMRT has been around? Are there any cure rates available after the five year period? I am concerned that saving healthy tissue using IMRT could be at the expense of leaving some of the existing cancer alive and well. Scary!
Any help you can give us will be greatly appreciated. You guys are the greatest!
Praying for you.... Bill
Hi Bill,
about your IMRT questions. IMRT was introduced around 1995, originally for the treatment of prostate cancer. It has the advantage of sparing healthy tissue as much as possible (such as the salivary glands). It will give the same dose as conventional XRT but the dose distribution will be conformed to the actual shape of the tumor. Often it is programmed to irradiate other areas of interest as well, such as lymph nodes, or in the case of a tonsil cancer, both tonsils. I can safely say that all of the comprehensive cancer centers in the US offer it.
Only Proton Beam Therapy (PBT) can spare more tissue, but it is often used in conjunction with IMRT.
XRT is commonly called the "shotgun" approach. Typically it can cause more quality of life issues in the aftermath, such as permanent loss of salivary function.
You must be a candidate for IMRT. If your tumor is poorly differentiated they may only be able to treat you with XRT. IMRT works best for a well defined tumor in one location. I opted for IMRT because I was medically qualified and my concerns for quality of life issues. I also sought treatment at one of the pioneering comprehensive cancer centers in the IMRT field and had one of the top docs in the US for a radiation oncologist.
Many local and regional radiation oncology clinics are updating their equipment to allow IMRT. IMHO experience is vital for any emerging technology. Be aware also that in some instances of more aggressive cancer, it may not respond well to radiation as has happened to some unfortunate individuals here. I believe that this is less common and usually occurs almost immediately post Tx, in a few cases before Tx is even completed.
The FDA has "standardized" (or rather "cleared to market") the Linear Accelerators (and MLC) for treatment but the treatment plan itself is "prescriptive" and will differ for each patient. As I recall it, the programming fees for my treatment alone were around $20,000.00.
In my case the doc told me she felt I had an 80% chance of a "total response" to treatment (even though my statistical odds were around 38% 5 year survival). The actual data is still being accumulated and I haven't seen it posted anywhere yet. Possibly the clinical trial they are offering you is one of those collection points.
What I have been reading lately is that the chemo cocktail followed by twice a day radiation in the end phase of treatment is the most efficacious treatment plan currently for radiation & chemo treatment protocol. I would recommend talking it over with your medical team and obtain a clear picture of the risks and benefits of the proposed treatment protocol. Incidentally the NCCN recommends clinical trials whenever possible.
There are some of us here that had very good results with IMRT. I have about 50% or better of my salivary function back and sometimes even forget to bring a water bottle with me. At 16 months post Tx there are no signs of recurrence.
Another advantage of IMRT is, because it is so specifically targeted, it can be repeated (although not in the same exact location) if necessary.
Hi Bill, your concern about leaving some of the existing
cancer "alive and well" is justified.
You have mets, so I would ask the doctors about
IMRT vs. XRT. I had the full-blast XRT, and it is
a rough course.
I also don't care much for Amifostine (Ethyol).
It made me very sick, and has a poor success rate.
If you can tolerate it along with the chemo, fine,
but if not, you can have them stop it.
O-O
Hi Bill,
I had XRT radiation one year ago this month, to both sides from my mouth down to my chest. I have about 50-60% salivary function and found I had saliva quite soon after radiation. My cancer was in my jaw bone and they were able to spare a salivary gland. I realize there are two sides to this issue, so I'll give you mine. Given the option of IMRT or XRT, I would choose XRT. BUT, keep in mind that I am one of the luckier ones as I didn't lose total salivary function. There are many on here that did and can tell you that they have adjusted to it.
Good luck with your decision.
Minnie
Hi Bill, welcome to the boards.
I'll tell you my experience. I choose IMRT because I'm 33, and wanted to keep saliva function for the many, many years that I aim to stay alive. I had 33 treatments over the winter and things went great. I bounced back quickly in terms of taste, saliva (though it's still pretty dry at night) and eating. But they discovered more cancer in a lymph node in May -- JUST below the area that the IMRT covered.
So the radiation seemed to do the trick, it's just that they weren't aggressive enough in radiating all of my lymph nodes (just the upper part of the neck). One caveat: they can use IMRT again with me to cover the lower neck now. They still consider me a candidate for cure.
If you are a candidate for IMRT, I would encourage you to consider it. But I would also relay to your docs my story. Make sure they are acting as aggressively as possible in terms of coverage. I think my doc learned a thing or two from me...
Looking back, I have no regrets about choosing IMRT. I do have questions though why my docs didn't cover the whole chain of lymph nodes in my neck... Didn't realize at the time that they weren't...
I didn't explain the term "MLC" in my previous post. It stands for "Multileaf Collimator". All LINACs have a collimator to shape and focus the beam but the MLC allows the main beam to be broken down into hundreds of pencil sized beamlets. It actually dynamically shapes the beam during the entire treatment process. They can program it for optimal entry points to spare as much tissue as possible. In some instances people actually gained weight during treatment and had few side effects (I wasn't one of them).
I actually watched, with fascination, the MLC constanting changing its shape during treatment.
IMRT has a very good track record and is rapidly becoming a "standard of care" for radiation therapy.
The following link explains it pretty well:
http://ebroc.com/imrt1.htm And also:
http://www.ucsf.edu/radonc/imrt.html You would not need amofostine with IMRT. Many get too sick from it to complete the therapy.
Thanks for each of your responses. I talked to radiation oncologist at UAB and she is reviewing by CTs to determine if I am IMRT candidate.
I am little frustrated that maybe she had not reviewed CAT/CTs before my consultation as their agenda was my participation in a clinical study.