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#82666 10-23-2008 11:39 AM
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marmc Offline OP
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Hi,
I'm new here, and hoping for some insight. My husband finished 14 weeks of chemo and radiation at U of Chicago in June for tongue cancer. He'd had surgery in October, 2007, but it recurred in January when the surgeon did a small laser surgery, but then it came back again. He's had two clean CAT scans since the chemo and radiation finished in June. Now his doctor wants him to take part in a "chemo preventive" clinical trial with a drug called erlotinib hydrochlorid (Tarceva). They want to do a blood test to see if he has a genetic marker to determine if he's at risk for return of the tongue cancer within 2 years. My husband has barely recovered and now this. I don't understand why they want him to take a year's worth of chemo pills (once a day) when he's now cancer free. The drug has been used before with lung cancer patients.

Has anyone else encountered this protocol or have any advice. It would be much appreciated. We just felt like our lives were opening up again and now we are pretty low. Thanks


photoperson
marmc #82671 10-23-2008 01:19 PM
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NO to your main question but if I hear you correctly, if he has a genetic marker that may determine if he's a likely candidate for a reoccurrence and if this study is using a chemo that may prevent that return, then I can see a benefit of participating in the study. Like most, if not all studies, I assume he would have a chance of getting a placebo and of course the chemo may not work as hoped for even if he does get the chemo.

I hope Brian comments on this genetic marker as I don't remember it ever being discussed here before.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #82676 10-23-2008 01:44 PM
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Marmc, My response is pretty much the same as David's, but my first thought is that, if it were me, I would probably participate. Of course I would do just what you're doing first - asking questions and doing research. Have they discussed possible side effects of taking it? How is he doing/healing since treatment ended? As long as it doesn't make him feel sick or weak, etc, then I would think that the possible benefits greatly outweigh any reason I personally would have to refuse. I also await Brian's input on this. Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
Lani G #82687 10-23-2008 06:12 PM
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After checking for side effects, I would do it! In addition to the possibility of actually getting the meds, there will be even more medical attention looking for recurrence and that's a good thing -- Sooner Detected, Sooner Defeated!(I just now coined that phrase!)


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
marmc #82767 10-24-2008 04:04 PM
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I participated in the same Clinical trial at MD Anderson. See my post regarding it here. http://oralcancersupport.org/forums...t&Main=1118&Number=9607#Post9607

I tested positive for the marker, and felt like the extra surveillance, and possible prevention from the chemo if I wasn't assigned the placebo, was worth it. I completed the active part of the study with no undue side effects in April and now am seen every 6 months by both the oncologist, who is the study chair, and also still with my surgeon.

More information can be found about the trial here: http://clinicaltrials.gov/ct2/show/NCT00402779

Please let me know if you have other questions.


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
Me2 #82768 10-24-2008 04:18 PM
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Pete, just like the mint coining rattling change for our pockets, You did a nice job on that phrase.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #82788 10-24-2008 07:26 PM
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I was offered the opportunity to participate at MDACC and opted not to. The usual trial nurse was not available to explain the study to me and my support team. The substitute did more to alarm me than to make me feel like it was well advised. Sometimes there is just too much information coming at you at once. I don't regret not participating at this point but then my post surgical outcome was different than most.


Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
Suess57 #82809 10-24-2008 09:35 PM
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personally i would want to know what the outcomes were for the lung cancer patients who opted in for the study. has this drug proved helpful to them or detrimental?

i also would want to know if this chemo is very toxic and what are the chances the drug itself could cause a recurrence or another form of cancer now or later.

If I was then happy with the answers to those questions, I would sign up for it if I felt the good outweighed the bad AND I felt up to the one year course of more to go thru ... but if i just did not feelo up to it ... then no, i don't think i would after just going thru so much already...

also does anyone know how much chemo one can receive without causing real problems? that is quite a toll on the immune system after just being thru a full round of 14 week of chemo, which has already crippled the immune system.... ???

I am in no way saying not to do it - that is up to you but I would have a lot of questions before I would feel comfortable if it were my body or the body of my loved one.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


azcallin #82887 10-25-2008 09:23 PM
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One of my acquaintances has been doing weekly chemo for a couple of years (breast cancer) -- Don't know what kind.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Me2 #82892 10-25-2008 09:50 PM
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marmc Offline OP
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Thanks so much for this information. I was given this impression by our physician that this was a completely new study,not one that has been going on for several years. It's interesting that you didn't have much in the way of side effects. Our concern is that my huband, when he was treated, had 7 weeks of chemo, 24 hours a day in the hospital, as well as 7 weeks of radiation, so to say that he is still pretty depleted is an understatement. He just finished treatment in June, 2008. He's barely recovered and now I feel that the doctor is trying to push him into another year of chemo and I think this could do more damage to him than anything. I'm terrified that if he did the trial, he'd just get sicker.


photoperson
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