BIBW 2992 & Dr Burzinskys Clinic, Houston

• By chessie-too
• Posted October 7, 2008 at 8:40 am

Pam,

I'm sorry to hear about your husband. I too am taking tarceva and worried what's next if it stops working. I have been following 2 new targeted therapy drugs in clinical trials now and supposed to be released later this year. They are XL647 and zactima. You may want to ask his oncologist if these are at all possible or if he can get into one of the studies. Tarceva is still working for me but I've been on it 2 years now and I know it will stop sooner or later.

Good luck and please keep us posted. God Bless

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• By SusanL1
• Posted October 7, 2008 at 9:02 am

Hi Pam: I was considering going on the BIBW 2992 trial but decided against it because of a misunderstanding on my part. Does your husband have the EGFR gene mutation? That is the first requirement, I believe, and the trial also has to be his second line of treatment, I believe.
This drug is supposed to be like Tarceva but the tumors are not supposed to build a resistance to it. I've heard people refer to it as "super Tarceva'.
Good luck.
Susan

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• By pamC1
• Posted October 7, 2008 at 9:11 am

Hi Susan and Chessie

I am trying to find out right now about zactima and XL647. He has not been tested for the mutation and again I am tyring to find out where i can get this done. I thought, Susan that that you can have had more then 2 lines of treatment according to the trials database.
HE had a rapid response to the tarceva and it lasted 9 months.
Any more infor would be so useful.
thanks for your input.
Pam

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• By 28forest
• Posted October 7, 2008 at 8:41 pm

http://weisenthalcancer.com/

http://www.rational-t.com/

Hi to both of you.

I have been on Tarceva for about 9 months and was a rapid responder, but its not working so well anymore. So - I am very interested in what you are finding out. I did find the above links on someone's page on this site, for cell testing - perhaps you might find it useful. I have a list of other trials as well I can send through to you if you are interested? Not sure the best way to do this.

Best wishes

Ruth

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• By pamC1
• Posted October 8, 2008 at 6:17 am

Hi Ruth

thanks for the above information, still looking at various avenues.

Have you come off tarceva now, and what does your oncologist recommend for you? I have heard that if you come off abruptly,then that means, it may come back with a vengeance.
It makes me wish i had done mutation testing alot earlier.

Pam

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• By SusanL1
• Posted October 8, 2008 at 4:07 pm

Hi Pam. When it was offered to me in September, it would have had to be my second line of treatment. Once I started Alimta, I was no longer qualified. It's possible that has changed though. However, if you do qualify, the manufacturer of the drug does the genetic testing for you and it should only take a week to get your results. Good luck.
Susan

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• By pamC1
• Posted October 8, 2008 at 5:09 pm

Hi Susan

I am currently checking out all trials at SK, Dana Farber and Beth israel deaconess Medical centre. He does qualify for some, and not others, each centre differs, some say that you can't have more then 2, others say more than 2 etc. He has 3 now, so its limited.
Its good to know that the manufacturer would do the testing, one headache less!

How are you coping on Alimta? My husband was offered this or gemzar and he is avoiding conventional chemo, and just wants to try another targeted therapy or just take LDN. He is already taking LDN for a week, I know its not enough but at least he is giving his immune system a boost each night.

Pam

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• By SusanL1
• Posted October 8, 2008 at 5:43 pm

Hi Pam. It's good to check out all of the trials - you never know. Another place you might want to check is NIH. They do a lot of trials in different locations.

I'm doing okay on the Alimta (if it's working - I get a scan next week). The worst is fatigue for about a week and flu-like symptoms for a few days. Other than that (and sometimes headaches), it's pretty tolerable.

What is LDN? I haven't heard of that one.

Good luck with whatever you do, but remember, chemo isn't as bad as what you've probably always heard. It's not picnic, but you still definitely (at least I do) have quality of life.

Good luck and take care.

Susan

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• By pamC1
• Posted October 8, 2008 at 5:53 pm

Its called low dose naltrexone. you can find out more about it at www.lowdosenaltrexone.org

The below is taken from the site:

How It Works
Low dose naltrexone might exert its effects on tumor growth through a mix of three possible mechanisms:

By inducing increases of metenkephalin (an endorphin produced in large amounts in the adrenal medulla) and beta endorphin in the blood stream;
By inducing an increase in the number and density of opiate receptors on the tumor cell membranes, thereby making them more responsive to the growth-inhibiting effects of the already-present levels of endorphins, which induce apoptosis (cell death) in the cancer cells; and
By increasing the natural killer (NK) cell numbers and NK cell activity and lymphocyte activated CD8 numbers, which are quite responsive to increased levels of endorphins.1 (abstract)

In short, its an opiate antagonist and works by making the body produce a mass of endorphins

It is taken between 9pm and 3am when the bodies immune system kicks in and this gives it a boost. It is used in many cancers, alot of success by Dr Bihari in NY especially where chemo was not used. It can stabilise cancer and there are many testmonials, there is an LDN forum too. It has been discussed on this site before, do a search on it and see what people have to say and its not very expensive, not more than $50 a month?
Have a read you have nothing to lose by reading it. I don't think it can be used with chemotherapy though and anything that is an opiate based medication either.

Hope the Alimta has worked for you, will keep you in my prayers!
best wishes
Pam

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