High Dose Tykerb Experiment - wish me luck!

[CourtneyL]

Hello lovelies - Its been a while since I've posted a thread but I thought some of you might be interested in my latest little experiment. As you can read from my signature, I've had another bout with brain mets recently. All else seems to be going well - we'll scan brain and body again in a few weeks to confirm that I'm coasting.

In the meantime, my doc and I have decided to try a little experiment to see if we can't find a way to keep me from getting new brain mets. I'm already taking Tykerb so we decided to play around with the dosage a little.

UCSF has a clinical trial where they are looking to see if a few days of high dose Tykerb, followed by a few days off, is a more effective way of administering the medication. The theory of some scientists there (Dr. Moasser) is that it is a much more effective drug in high doses but can only be tolerated for so long because of GI side-effects like diarrhea.

Rather than join the trial, I'm running my own self-experiment, with my doctor's permission of course, to see if this might work for me. I'm going to work up to 3500 mg/day for 5 days followed by a 9 day rest cycle. So far I'm on day 3 and have worked up to 3000/mg per day. I'll take the larger dose tomorrow and Tuesday and then I'll take 9 days off before repeating. Hopefully diarrhea won't be too much of an issue and I'll be able to give this a try for a little while to see if it just might make a difference.

I'm curious if anyone else has any experience with this or has been on the trial? Thoughts? Am I crazy?

[StephN]

NOT crazy - just want to keep the little devils from coming back! No harm in working a new system to see if you can get a longer period (or never) between brain mets.

I'm excited for this "personal trial" and thrilled your doctors are willing to work with you this way. Hooray for personalized treatments.

[chrisy]

Very interesting! Just curious, is this the dosage schedule in the trial? Or if not, how did you arrive at that dose/days?

I also second stephs sentiment- great, and rare to get a doctor willing to tinker with the "standard of care" even with good theory behind it! Let us now how it goes!

[Trish]

Courtney, good luck. I tried a mini experiment too (with my onc's approval) after reading an an article posted by Rich or GDPawel. I think it was referred to as "pulse" doses or something. I am sensitive to Tykerb so I only went up to 3000mg a day for three days around the time of my weekly Abraxane. Think I only tried it for 2 cycles bc that was all I had of the drug at the time. I can't be sure of the timing of the onset of my response but I did only start showing good response when Tykerb was added to the Abraxane/Herceptin mix. You could hardly say I was rigorous in my methodology! I am now on a more conventional daily 750mg and still responding. Fingers crossed.
Hope it works to keep your pesky mets at bay.
Trish

[Delaney]

Hi Courtney,
How many tablets is that daily? I am going to mention this to my oncologist tomorrow. Thanks for sharing and very best of luck.

Dear Courtney,
we discussed that trial a month ago here http://her2support.org/vbulletin/sho...hlight=moasser. It seems to be very promising. It's great that it is continued. How many people will participate in this trial?
Good luck, you young warrior ))))))))

[Ceesun]

Hi Courtney, Just wanted to say good luck with the tykerb experiment sounds very new to me! I have been on 5 tablets of tykerb since sumnmer 2008--keep the immodium on hand! I take 2 a day as a preventative for the runs to the bathroom...was advised to catch it before the stomach starts to react. Take care, sweetie. Ceesun

[GracePang]

Courtey,
your doctor is so open minded and good for you. Best wishes for your little experiment and it seems you tolerate the drug well. I am on 5 pills a day now for 10 days; still adjust to diarrhea and loss of appetite.

[bejuce]

Hi Courtney!

That's so exciting!!! I heard Dr. Moasser speak about his research a couple of times at UCSF and could feel his excitment, belief, and passion for this approach. It definitely works in mice and hopefully will work in humans too!

Just make sure you use that Suki lotion every night to avoid a skin rash - I think it was you that recommended it here on this board and it was a lifesaver for me when I was taking Tykerb.

Good luck and keep us posted!

Marcia

[schoolteacher]

Courtney,

Let me know how the experiment goes. I have been taking 1 Immodium 10 or 15 minutes after taking my Tykerb. My dosage is 800 right now because the last two cycles with Xeloda I had really bad diarrhea. I have put on 4 pounds, so I am sure they will up the dosage. I currently take 5 pills everyday.

Please let me know what happens.

Amelia

[Joan M]

Courtney,

Glad to hear that your onc is willing to let you personalize a trial. Let us know how it goes.

Joan

[caya]

Good luck Courtney, this certainly sounds like a very promising "experiment."

I hope you get great results....

all the best
caya

[Bill]

You go, Courtney! Please keep us posted. Our prayers and best wishes are with you. I'm glad that you have the good doctor that you do.

[krisvell]

Courtney;
Good luck with your experiment and that the BMs will be gone for good. You may be helping me too. I'm not sure what they are recommeding for me nothing or Tykerb/Xeloda.
I wish you great success with your experiement.
Love and Hugs,
Kris....

[CourtneyL]

Thank you all for the encouragement and advice. So far, so good. I'm experiencing some appetite loss (bummer since I have a fun dinner planned tonight for Valentine's Day with the hubby) and some diarrhea but so far it is manageable. Only 1 more day until the off period begins!

To answer some questions, we based our protocol on this abstract presented at ASCO a few years ago:

http://www.asco.org/ASCOv2/Meetings/...stractID=31533

The study there describes a 14-day cycle with 5 days of Tykerb and 9 days off. Starting dose was 1750 mg and went as high as 7000 mg! For my experiment, 3500 mg is really as high as we can go given that insurance only approves a daily dose of 1250 mg (5 pills). So that's where the number came from. No real science to it.

Okay, off to enjoy Valentine's Day. I'll update y'all when I have some news to share. Take care and thanks again!

[Julie2]

Hi Courtney,

Are you on Tykerb with Herceptin now? Wishing you all the best with your new approach.

-Julie

[Gerri]

Courtney,

Hope you enjoyed your Valentines Day dinner with your hubby. It is so important to make time for the fun things in life.

Good luck with your experiment. You are an amazing young woman!

Keep us posted.

[Flossie]

Hi Courteney,

I am keeping my fingers and toes crossed for you. Will be really interested to see how you get on. Hopefully this will keep those pesky critters away for ever!!

[hutchibk]

I think this is fantastic, and I will be keeping a close eye on you lady... to see what comes of this.

I just did 5 more days of IMRT on 3 previously treated brain spots and also the one in the pituitary area (inside skull, but not blood brain barrier) which seemed to show increase, but still no new spots, which I consider good news.

I also enrolled in the T-DM1 EAP trial in Denver this week, so I am off of Tykerb and tamoxifen now. I get my first T-DM1 treatment in Denver on March 4! Whew. I did it. I am excited. My trial doc is top notch and I think this will be a great opportunity on my path.

Can't wait to see what your experimental treatment regimen yields, but it sounds like a great idea! I recommend taking liquid immodium every morning as a matter of course, 1/2 to a full capful as seems necessary. It is so much easier to stay ahead of the pooterookis instead of trying to rein it in!

[Mary Anne in TX]

Brenda I'm so glad you've been accepted into the T-DMI trial. How often will you get that mountain view? ma