Pattz's Question/how long to get Tykerb?

Sandy H · 06-09-2006, 05:23 PM

I saw my oncologist today and he is starting the process for getting me Tykerb. He said he can start the process June 12th (not before) and it should only take 2 to 3 weeks. He did not mention about using it with Xeloda but I see it is so I will e-mail him and ask him if that is the way he has to do it. I was on xeloda way back and didn't like it at all. He said it is not being giving with herceptin. This is used when herceptin alone is no longer working and there is progession of the disease. Now, once it is released supposedly this fall that may change. I tried to access the trial but was unable to do it. Does anyone know what we will be using for pre meds if any? Perhaps, our friend, Al can shed some light here. Your turn Al. hugs, Sandy

Susan2 · 06-09-2006, 07:21 PM

My dr. spoke with GSK about Tykerb. What they were told is that the drug can only be given in a clinical trial scenario in combo. My dr. has the ability to do a clinical trial so that's not an issue. But I don't want a combo, so that rules me out.

Hope it works for you.
Susan

al from Canada · 06-09-2006, 09:28 PM

Hey sandy,

If tykerb is like tarceva, then no...I wouldn't think so. This is a biological therapy not chemo.

anyone else?
Al

Joe · 06-10-2006, 05:32 AM

The clinical trial includes Tykerb w/ Xeloda. The FDA should approve Tykerb around the end of 2006. At that point we'll be back to the "off label" scenerio, I'm sure.

There were rumors at ASCO that GSK will start adjuvant trials later this year.

Regards

Joe

Lisa · 06-10-2006, 07:04 AM

So, let me get this straight. Tykerb would be given in combon with Xeloda, but Herceptin would NOT be a part of the treatment. Right?

Love and light,

Lisa

Susan2 · 06-10-2006, 07:24 AM

http://www.cancer.gov/search/ViewCl...earchid=2377126RhondaH posted this link to a open clinical trial comparing Tykerb and Herceptin to Tykerb alone. Don't know if this would be of interest to you.

pattyz · 06-10-2006, 09:17 AM

Sandy, I'm not SURE about this, but the only trial I saw still open is for brain mets progression: Tykerb+Xeloda.

Also, the dosages of Xeloda used in trials were on the low side, if I recall correctly. A GOOD thing. Still worked effectively.

My personal concerns now are this er receptor being turned ON by the Tykerb... it seems it's always something. Have waited a year (?) for the drug, now this big question mark...

I do appreciate your report on the timing of availability. Thanks for that.
hugs,
pattyz

Sandy H · 06-10-2006, 06:49 PM

Patty I am confused now because, I saw on the IBC board a posting that said in a Phase II trial Tykerb was used for Inflammatory breast cancer and it did not mention it being used with herceptin or xeloda. I was thinking that my being IBC then it would be used alone. He did tell me that it would not be used with herceptin. He did not mention using xeloda and I had already told him that xeloda did not work for me. I am going to e-mail my oncologist and see what he says. hugs, Sandy

al from Canada · 06-10-2006, 10:36 PM

although both Tykerb and herceptin are HER2 inhibitors, they work differently as one works on the intracellular domaine and the other on the extracellular domaine. That's why they are such a good fit together; sort of a belt and suspenders approach. The HER1 part of tykerb is the added bonus being small molecule and all. There is a trial for brain mets with Xeloda and Tykerb but, that; in my mind is questionable, as I think Xeloda is right on the molecular edge for blood / brain crossing. Lani, RB......is that right?

Al,

ps, I don't think I answered your question?????

tammymarie1971 · 06-10-2006, 11:45 PM

Will it(tykerb) be as accessible in Canada too?? Also when I hear about some ladies who have access to their tumor samples ..does Canada store tumors as well and if so is it a provincial thing or federal? How do I go about getting access??
Thanks..I'm not sure if you'll know, but thought I'd give it a try.
Tammy

pattyz · 06-11-2006, 05:05 AM

I went looking for my saved material on the molecular wgts of a few chemos <sigh> I must have put it in a VERY safe place, as I can't find, ofcourse.

However, I did 'stumble' on this saved post:

Date: Mon Oct 25 2004 - 23:39:35 EDT

Just thought I would update all those who are interested in brain mets treatments on my sister J's status.
J has recurrent brain mets after WBR and several SRS treatments. Dr. Winer at Dana Farber wanted to put her on his new trial of GW572016 for brain mets, but felt Judi couldn't wait for the trial to open due to
her rapid progression. So he put her on Xeloda (2 weeks on 1 week off) for two cycles.(According to Dr.
Winer, Xeloda, with a molecular weight of 389 Daltons,
does in fact cross the blood brain barrier. Another Dr. at Dana Farber also informed me that Xeloda crosses the BBB--

Al, my search on the size shows up as 359, not 389. I think the reason for the trial using Xeloda in combination with the Tykerb is reasonable and most likely BECAUSE of the molecular wgt and 'anecdotal' good responses for brain mets. Me for example

)

Best to you,
pattyz

pattyz · 06-11-2006, 05:10 AM

Ofcourse your onc would be able to find (or know) the definitive answers on the trials etc. As I mentioned, I'm not SURE

) And a site dedicated to IBC should really know what they're talking about, so I'd give credence to that fact.

xoxopattyz

al from Canada · 06-11-2006, 07:25 AM

Linda was on Xeloda for 18 months and a lot of good it did!

Couple things thoughm there is evidence that if you had WBR that the rads actually blasts holes in the BBB, allowing some herceptin to cross. The problem is that Cancer always has a plan B, so drugs like pertuzumab (HER1,2,3 inhibitor) + say AI's + VEGF inhibition may the course of the future.

Trials in Canada for tykerb: yes, Sunnybrook Womens Cancer Centre in Toronto, (Dr. Maureen Trudeau), I think in Hamilton as well, Montreal and Vancouver probably. Just a footnote; when Linda was dying, I was intouch with Dr. Eric Winer to get some Tykerb and it would have happened if only Linda could have swallowed.
Al

pattyz · 06-11-2006, 05:06 PM

Dearest Al,

I feel very VERY lucky to be responding to the Xeloda/Temodar for my brain mets. And I know that I am not alone in my response. However, we have been around long enough to know that one person's good response is anothers' NO response. I hate that it was a waste of Linda's precious time...

Because of my response, others too, ease of tx, minimal to no side effects, I would and do still highly recommend this combo for anyone who's run out of other options.
I remain a non-WBR'er, yet have had five focalized rad sessions to treat 16 mets scattered all over my brain. Perhaps they have created my 'leaky' brain. Whatever the reason, I always hold hope that this combination will continue to work for me.

Very best to you,
pattyz

al from Canada · 06-11-2006, 06:32 PM

Patty,
(dearest Al; that's cool)
It wasn't a waste of her time as it was very successfull at keeping things at bay (in her liver) except.....success everywhere else except for the brain mets.
I've given a bit of thought to this, as why good in liver and not at all for brain mets and my only conclusion is that the cancer changed it's signature. We know that cancer always looks for the out, adapts, etc. That said, some people can draw their own comclusions......

take care,
Al

Sandy H · 06-11-2006, 07:09 PM

I know there is the trial of Tykerb and Xeloda but what is the compassionate program about? I am confused here and maybe, its my chemo brain. It seems I am not the only one. Also I saw in the paper a few weeks ago that these new drugs that are in the process but will take a while to come through are available for those that need them when all else has failed. Any comments here??? Thanks Al, you are wonderful to jump in here and try to help me here. I guess it will be up to my oncologist to figure it out and I know he can and will but I am inpatient at times. hugs, Sandy

VaMoonRise · 06-11-2006, 07:23 PM

As most of you know I am on the clinical trial consisting of Herceptin, Taxol and Tykerb. If I were on Tykerb alone there would be no pre-meds. The pre-meds I receive on the clinical trial are Benadryl, Dechadron (sp?) and Zantac. Most would have to take a anti-diarrhea medication with just the Tykerb though as that seems to be the worst of the side effects from Tykerb but it also can cause heartburn and a slight rash that looks a lot like pimples. Overall it is very tolerable.

I don't believe that Tykerb will turn on the ER receptor from everything I have heard and read thus far.

They are also using Tykerb along with Arimidex sometimes with Herceptin as a part of this combo too.

I am not on this trial because of Herceptin having not worked, this is the first time I have been on any type of chemotherapy and I just happened to luck out and get put on this trial and I am the first person in the world to be on this combination of drugs. I believe I was chosen because of my age, good health going into it except for the mets to the liver and spine of course and my willingness to participate. So far I am responding great to the treatment. My first CT scan after just eight weeks showed that the two largest tumors in my liver had shrunk by 20%, the second scan showed more shrinkage and my recent CT scan that I had done last week showed vast improvement and many of the smallest tumors were no longer evident. My bone mets are stable.

I am very excited about Tykerb soon being available to more women and I would tell all women that are considering trying it that it is very tolerable and the worst side effect like I said is diarrhea.

I just read at my oncologists office that strawberries have a property that helps to kill off cancer cells especially in the liver, has anyone else heard of this? Good thing strawberries are in season right now. I have been eating a lot them since reading this.

Nicola

Shell · 06-12-2006, 05:20 AM

Sandy-

I don't know whether you can get the tykerb alone, but I was on the xeloda/tykerb trial, and have been taking tykerb with it now for about 2 months. There are no pre-meds for this combo - both meds are pills - and I take the xeloda for 14 days on, 7 days off, unless my H/F gets too bad - then I take a bit of a longer break until the H/F goes down to a Grade 1. I take the tykerb daily.

Hope you get your other questions answered...

Shell

pattyz · 06-12-2006, 07:33 AM

Oh (Dearest) Al......

I seem to keep putting my foot in my mouth. Sit inactive at keyboard with fingers just hovering now...

Please keep in mind my brain is a malfunctioning organ most days. That is my only 'rationalization'.

From my first dx of brain mets, nearly four yrs ago, THAT has become my own area of 'expertise' coming from my personal history of bc. I responded well to Navelbine/Herceptin simultaniously for other mets. No further tx since then. Brain mets only. I do understand that my circumstanes are 'unique' to me. But, it's ALL I have to offer. My own experience.

Warmest regards,
pattyz

cathy34 · 06-12-2006, 08:45 AM

Hi to all,
I spoke with my onc on Friday about the Tykerb drug. She is very excited about it and what it is doing. Right now, I'm in a wait and see phase. I am on Navelbine w/Herceptin combo that as of my last chest CT scan in April it was working. I have to set up an appt for my next Chest/Ab/pelv CT before I see the onc. again on July 7th. My onc. said she won't stop my treatment that is working to try something that we aren't sure if it will work for me. I'm all for that approach right now. I am just so happy that she finally find a mixture that is finally working for me. I pray that it continues to work in my favor. With my next CT we are looking for additional shrinkage or no change with no new growth.
Only positive thoughts +++++++++++++++
Cathy 34