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

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.

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

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!)

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.

Pete, just like the mint coining rattling change for our pockets, You did a nice job on that phrase.

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.

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.

One of my acquaintances has been doing weekly chemo for a couple of years (breast cancer) -- Don't know what kind.

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.

i would have to say i agree with your concerns marmc - i too would feel it was too much on the system... his immune system has been kicked apart and needs to rebuild - and to continue bombarding it for another year - yowza... i don't know - i may be in the minority but i am of the mindset that the minimal amount needed is the maximum you should take into the system. these are toxic substances being put into the system and it effects the entire system not just the cancer... if he just completed treatment in june, he is not nearly recovered yet from that treatment ... and to then start another round that continues for a year ... i know what my answer would be but you have to make up your own mind but if you are not comfy with it then go with your gutt.

The Rule of Thumb for radiation recovery is one month for each week of nuking...

If you are uncertain, get a second opinion as to the need for chemo continuation.

Thanks, Pete. I hadn't known that rule of thumb. We're going to see our original surgeon, a guy who we actually trust who looks you in the eye when he talks to you and doesn't have any bias, on Friday to get his take on this. All of the replies from everyone have been very helpful. When my husband was going through treatment, it was too hard for me to look at this forum. I'm so glad I came back to it. Thanks for helping to talk me down.
Mary

I don't know the origin of that Rule of Thumb and I really don't know what "radiation recovery" means but I will say your body will take well over a year or two to "recover" as much as it will. I am still seeing "recovery" from my ordeal and I am over 2 years out. It was appx 16 months post Tx before I thought I was finally satisfied with my taste and dry mouth recovery and I saw a slight improvement in both areas after my 2 year mark. My whiskers below my chin which were blown away from radiation have just recently started to creep down a bit farther requiring me to shave there for the first time in over 2 years. I wouldn't even think that your body will be finished recovering in 7 months, heck, I was just getting started. Expect a long recovery period and don't ever think you've finished.

Careful guys,
Tarceva is not like your regular chemo therapy.
It is a targeted drug that inhibits tyrosine kinase (EGFR). Erbitux also targets that receptor but from the outside of the cells, while tarceva works from the inside. It is a much much smaller molecule and not a protein. There are also side effects however, apparently on can also get a rash (and others), I have no idea how severe this is and how frequently it occurs.
Perhaps those who had it will pipe up?

M

I've read the Rule of Thumb a few times on this forum -- Recovery may never be complete, but at seven months for seven weeks I felt pretty much human again.

The point of the RofT is that one still won't feel good only a month or two after radiation therapy...

Pete,

Not arguing with you, but I still don't agree that a 1 month to 1 week recovery is even close to being accurate and I don't think we should lead people to believe that after 6 or 7 months they will be recovered. JM2C's

Geez, I have to shave everyday. Maybe that's why I hear the Drs tell me that they have never met anyone like me before. I think it's that I don't think about what all this body has been thru even before OC. And more to go maybe. Will post that in General and not here.

EZJim,

Ditto! Though I don't have to shave.

Lani

David, I'll insert "at least" "feel almost human again" in the phrase in the future. I use it because some key posters here have used it, which is where I got it from. Again, the point is that it WON'T be seven weeks, more like seven months. The thyroid article shows that some effects can be seven years out.

I just don't think we can fit even a majority of people getting treated for OC into a mold, whether it be how they will react during Tx or how they will recover post Tx.

First off all of us are unique individuals with our own physical and mental makeups. Add to that equation pre Tx major surgery to no surgery; many chemos to no chemo; radiation (IMRT to RT) up to 72 gys spread over a different targeted path; Peg tube vs. no Peg tube; and I'll throw this in HPV+ vs. HPV- cancer.

What I think we should be telling fellow patients, caregivers and concerned bystanders is what we say many times...we can all react differently and that the Tx can be anywhere from a inconvenience to a nightmare and that the recovery can take a very long time, even years.

My point is that I don't want anyone to feel as if they are not "normal" during or post Tx and what is "normal" is up to them. Everyone has enough to deal with without feeling that they are not dealing with the Tx or recovering "normally" because something additional may be wrong with them.

Good point Lani. You have me laughing. Thanks for the cheer-up.

David, we are getting wrapped around the axle here in semantics. My point is that when people ask when they will feel better, it won't be only six weeks out from radiation...

However, you should be discussing this with Brian ("It takes longer than you might expect. About one month of recovery for every week of radiation until you start feeling like life is normal (albeit a new normal) again.") and Gary ("Many times it has been said that it takes one month of recovery for each week of radiation.") as they are the ones I am parroting and am in agreement with -- As always, YMMV!

Feeling better and the time to do so IS somewhat variable. There are no absolutes in cancer. But after talking with literally hundreds of patients now, the week/month thing is about right. It is also a function of the number of grays of radiation that you had, and other collateral damage or ill health issues that you have and age. But I will stand by the timeline given all the people that I talked to. David was one of the lucky ones, and there are a few, but I would not call him typical in so many ways. Bottom line is it is going to happen at a speed which you will have little control over, so thinking about it isn't going to change how fast your body deals with radiation sickness etc. Just try to get back into life at steps that seem reasonable - walk around the room, get out of bed, go out in public, try to eat new things, etc. etc. Those things you can control. Your biology you cannot.

i see this posting closed for about a year. but should you visit again, i would be anxious to know if you did the trail studay. i just started it 9/15/10. 200mg/day - Tarceva/Erlotinib. i would be interested in hearing about someone elses experience on this drug. i should have surgery for the removal of the turmor in about 3-4 weeks. but i would like to know how other's performed on the drug.

thank you,
julie