Hi Emily - this is such a stressful and fear=filled time for your entire family I'm sure. When I was diagnosed in 2002, I had so much well-intentioned information "thrown" at me from people who really didn't know anything specific about my particular cancer. A cardiologist friend of mine told me to take what was useful, positive, constructive and reasonable and throw the rest out the window.
Please understand that the information you receive here is from patients, advocates and survivors who have combed through every drug, treatment, etc and speak from the truth they have experienced - you can't really say it's nothing personal because it is very personal - from a cancer survivor's perspective - we all get a little testy.. hope your mother does well in treatment.

Hi there, thanks. I definitely appreciate peoples advice that have dealt with oral cancer, whether it good or bad (i know how to ignore bad advice). The way he said it was very rude, I felt. This drug therapy we're doing is her only chance of survival so for someone to poke fun at it really pisses me off. Theres a right way and a wrong way to say something. Especially if you've dealt with cancer yourself, youd think how to be a little more sensitive to someone during certain situations.

Emily = having gone through this 3 times already makes your mother somewhat of a "pro" with this nasty business. Whatever decision you make, we're all hoping for the best results and many more years for her. You're all in our prayers. Keep us posted on her progress - Beth

EmilyE

Boo Hoo
so you are upset that I was lighthearted about how Erbitux did not work for me even though you now admit that no doctor had or was even considering Erbitux for your mom. What a lot of nerve you have to call me rude after making fun of my cancer coming back and joking about having better doctors for your mom.
You said you were going to let this go, and I was inclined to cut you slack due to the obvious strain you are under. Plus I tend to resist battle of wits against unarmed people, but I willing to make an exception for you now.
Charm

Well this thread has gone south really fast. The facts are that when you have few options, you try the ones that you have regardless of how remote or close the success might be. Targeted therapies are still in their infancy, and we are not even actually sure how they all work when they do.

I have posted this before, but rather than try to chase an old post down I will do the short version of it here. It all started with a targeted therapy called Irrisa for lung cancer. It was a commercial failure. It only worked in 10% of the patients that took it.... but in those patients it worked 100% of the time. They are still sorting out what genetic traits that 10% have in common with each other so that it can be given to those patients where they will know that it works. They have not figured that out yet. Of course the manufacturer doesn't really care at this point, as it doesn't make money and others with government funding are looking at who it will work in. It's all about understand these things that interfere with the cells functions. But your cells, as similar as we are to each other, are different than mine. And there in lies the problem. The model has to transfer from animals, to humans, to all or at least identified groups of humans.

Bottom line is that with all of these targeted therapies, because of their unique methods of action, we can't be sure who they will work for and who they will not. At least with Erbitux the downside (except for the extremely high cost for the drug) is very little as far as quality of life issues go. So if an insurance company will bite, why not?

These are tough times, and everyone wants a successful outcome regardless of the odds. I think that the trick is more about mental strengths to continue the fight if you choose to, and when you have decided you have done all that you can, to have your family buy into your decision. It is tough on everyone to be on the edge of success or failure. Sometimes it is tougher emotionally for the family members than the person in treatment. When one person gets cancer, the whole family gets cancer.

Hi Emily- I'm glad that the Drs. you met have identified some therapies that can help your mom get this cancer under control and hopefully also some relief from her pain too. That is all good news. I'm glad that you've got some real options! Also, I think Charm was just joking around with you. Email can be really misinterpreted sometimes. I"m so sorry it was upsetting.. its really the last thing you need right now. So lets move on from that...

Anyways, what a rough and rocky ride you are on. I know this is a very emotional and stressful time. Its llike a rollercoaster you can't get off of or a bad dream you can't wake up from.

I too had to deal with a very sick mom when I was 25 & 26. It was awful. I didn't even have to deal with the actual medical side of things-- that was all on my Dad so I can imagine it must be very tough sorting through your emotions and then dealing with the logistics of appointments and taking care of her etc

Well as hard as it is do try and enjoy the little moments you can with your mom. She sure is one tough cookie. Do you have other relatives or family friends etc that can help you out? Build as much of a support system as you can. People that love you and who love your mom will want to do anything to help you in whatever ways they can.

Thinking of you and sending you strength to get through this.

XO Kate

Also I wanted to say that I know how you feel when you post something after a long tough day only to see negative or insensitive responses ..... its pretty deflating. This has happened to me a few times on here too. Sometimes I think people tend to forget how intensely scary this all is right when you are going through it.... something we should all keep in mind.

Anyway- I do hope you know we are her for you. I'm thinking of you and hoping your mom can get started on medication soon.

K

Thanks for understanding how stressful this is for me at the time. We are literally in limbo in Houston right now. They want her to stay for at least a month to start this therapy. 2 pills, twice a day and once a week drip IV. They want to monitor her for a month to watch her reactions to the drug. We were planning on going home today - I had to call and cancel our plane tickets, another ordeal to deal with. I have no idea when I'll be going home, so I couldnt reschedule it.
The oncologist was ready to get her started on this today or Friday but wanted to wait till he saw results from her pet scan. Her CT scan showed her chest was clear so thats some good news. The appointment schedule is crazy here! Her first appointment 2days ago was 7am and the last was at 8pm (the ct scan) - we didnt get out of there till 10:30pm! she hadnt had any pain medicine since the morning - it was awful.
And yes Brian as you said, the reality is when these trials are your only option, you do what you have to do. Why not try it? We're not going to just let her lay down and die without a fight.
My only glimmer of hope is that we are doing the trial with the best. Oncologist said of course we can go back home and he can recommend another hospital to us where we can try their trials, but she wouldnt receive the same medication they are going to try here.

So of course we're going to stay - figuring out how to pay for that is another feat in itself

Kate - I do have a stepdad and a brother. My brother calls for updates. My step dad will probably end up driving here from NC so theyll have a car and we can get rid of the rental. At that point when he gets here, Ill go home. my mother and father in law have been wonderful too. MIL calls me everyday. They actually gave us $300 to come out here with for extra expenses.

So the plan for today is to meet back with the oncologist, get her results from PET scan. Hopefully hasnt spread to rest of her body. If so, we should start this trial, hopefully today.

On top of everything else, we found out last night I am pregnant! I told my husband via skype lol

As always, wishing you and your mom the best possible outcome with the trip.

CONGRATS on the baby

It would be a good idea to ask the docs about being around yor mom since you are pregnant. The first time I went thru treatments, I remember the doc saying something about staying away from pregnant women. Sorry, but I cant remember why. I also do not want to alarm you about this, just be safe and ask the doc.

Emily

I apologize for my boorish post. I overreacted since the failure of Erbitux remains a sensitive subject for me
I'm older and should know better than to post in anger.
I should have been clearer in my original post that since the therapy is so necessary for your mother, it would not hurt to question the doctors on reliance just upon a mono therapy especially the targeted ones.
Doctors are just discovering the complexities of the KRAS gene and its' interaction with growth factor receptors that appear to favor multi faceted treatments. My intent was not to mock you (I think you can see that when I do that is is crystal clear and does not require any second guessing)nor belitle your mom's situation but to have her avoid my less than optimal results
OCF is a wonderful place and I won't be bothering you here
charm