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#43650 07-25-2004 05:05 AM
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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


Diagnosed July 1, 2004, SCC Stage IV, 3cm base of tongue, 5 cm left neck.
#43651 07-25-2004 10:19 AM
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Hi Bill,
I underwent a clinical trial with Cisplatin and IMRT last year. The decision for me was based on my perception that IMRT would kill the cancer while leaving the good tissue. Quality of life was important to me. The combination with chemo was recommended due to the advanced stage of the disease. I felt the nature of the trial would give me a stronger treatment plan. I think my message to the Doctor was don't hold anything back. If it did not get it all, then surgery would be next. Even with the focus of IMRT, the surrounding area around the tumor still gets hit. I don't recall how long IMRT has been around, but I think it has been since the mid 90's? The whole process is scary, the best advice is read everything and ask a lot of questions. While I trusted my Doctor, in the end I made the decisions.
Best of luck,
Bob

#43652 07-25-2004 11:05 AM
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Bob,
Welcome from a fellow Virginian. I live in Virginia Beach.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#43653 07-26-2004 04:15 AM
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Bill,

I have not read any results regarding this trial. How did phase I go? What was phase one?

I signed up for a trial myself (read my signature below) based on two things.

1. 93% local control rate.
2. 90% distant control rate.
This is based on 2 year survival. But it is still better than the results that most places were giving me.

I looked at all the hospitals in the midwest area (and I mean all) and all the hospitals that specialize in HNC in the U.S.. It came down to three places. Sloan Kettering, M.D. Anderson and the University Of Chicago.

I chose the University Of Chicago based on reputation and the fact that I live in northern IL.

Please ask your doctors what kind of control rates you can expect. While no one can gaurentee that you will be on the right side of the curve, knowing this information is very helpful if only for piece of mind.

The standard protocol used by the top hospitals for HNC (SK,M.D.A., U OF C) is somewhat different (i.e. my signature).

UAB is a great place. Do you have a team of doctors i.e. Sug,Oncol,Rad? Is there a tumor board? What have the control rates been to this point? Is there anyone you can talk to that has been through this program?

If I can help in any way. Dont hesitate to drop me a line.

Thanks,
Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#43654 07-26-2004 05:57 AM
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I am a firm beleiver in IMRT. The docs know how far to go with it to make sure they get it all yet spare things that can be spared. They spared my upper sliava gland and thank God they did. The reduced Salaiva is OK but couldn't imagine not having any like a lot of folks. Regarding the chemo, sorry can't help you there.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
#43655 07-27-2004 01:53 AM
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Rob,

Clinical trial is in Phase II (efficacy). Phase I was toxicity. It would go to Phase III (comparing with other protocols) if Phase II proves effective. Trial is UAB only with 35 patients. They currently have 14. They do not know if protocol is more effective than conventional...they just said early results are promising. IMRT would not be used in clinical study which is why I had to get them to go back and see if I am IMRT candidate. Study is only six months old.

UAB is a comprehensive cancer center with tumor board etc.

I asked them to have someone in treatment call me but that has not yet happened.

Bill


Diagnosed July 1, 2004, SCC Stage IV, 3cm base of tongue, 5 cm left neck.

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