Tykerb/ herception in stage 3a locally advanced patients

joletta · 09-14-2010, 10:41 PM

hi does any one know if tykerb is approved in conjuction w/ herception in stage 3 breast cancer. (strongly her2 pos) or just for metestic breast cancer. Does any know where there are offering trials and does it look like I would be elgible based on my sig profile. I strart herceptine alone 2nd week of november. Also does any one know the pros ands cons of these 2 drugs in conjustion. I am going for the cure as we are all in the same boat here! Also i see some "tykerb off lable" what does that mean Unfortunatly my hospital does not offer that either

Thank you for any help provided,
prayers and love,
Joletta

Lori R · 09-15-2010, 07:39 AM

Joletta,
I will be very interested in the response to your thread.

I am Stage IV and did not receive strong support from my oncologist when I asked about Herceptin/Tykerb (without Xeloda). My Onc (whom I generally like) danced around with statements that Tykerb isn't a "walk in the park".

I am going to pin her down when I visit this coming Friday as I want to know what my next step will be in case I have another recurrance.

I do know that Sheila successfully fought (took her 3 months) for the combination, but she is Stage IV as well.

Hmmm....I think bjuce might have been on a Herceptin/Tykerb trial. Maybe she will have insights for earlier stage approaches.

Good Luck....I am with you on pursuing more targeted approaches to treatment!!!

bejuce · 09-15-2010, 11:22 AM

Yes! I was on a trial at Stanford and got Tykerb prior to my mastectomy. After surgery, I went on my year of Herceptin.

I believe the ALTTO trial is an ongoing phase III trial to compare Tykerb with Herceptin. Not sure how to guarantee you'd take them both.

I'll ask my oncologist next time I see her. Since you're in CT, you may want to research trials options at Memorial Sloan.

Good luck and all the best in this phase of your treatment!

Marcia

joletta · 09-15-2010, 06:06 PM

Thank you Bejuice I will search that. I am already on herceptine so not sure if I would be to late for that trial and since it is phase 3 can i wind up w/placebo. Since it sounds like this drug works..hopefully they will soon approve it for lower stage off trial.
Thank you for your help..please keep me posted if you find out any new info I will ask my oncologist also.
Joletta

vlcarr · 09-15-2010, 08:45 PM

Hi Joletta,

I checked to see if Vanderbilt was still doing the trial I was on and it looks like they are. Here is the link:
http://oncore.mc.vanderbilt.edu/sip/SIPControlServlet

I'm not sure if you would qualify since you are already on Herceptin but wanted to share the link with you. As you can see from my signature, this trial was a huge success for me.

In case this link doesn't work, this is the link to all trials offered and you can do a search using breast cancer.
http://oncore.mc.vanderbilt.edu/sip/...se_site=Breast

Looks like you diagnosis is very similar to mine.

Best of luck to you!

Dakini52 · 09-17-2010, 12:48 PM

I am currently receiving both Herceptin and Tykerb for a small tumor recurrence that I developed earlier this year. You should most certainly have access to both these drugs if you are stage III. They are not being used only for advanced breast cancer anymore. Tell your doctor to get with the program or find another doctor :-)

Dakini52 · 09-17-2010, 12:50 PM

PS - I am not part of any trial. This is the treatment I am receiving directly from my oncologist. It's true that Tykerb is no walk in the park but Tykerb and Herceptin at least in my mind are what we have to work with today and should be utilized!

Dakini52 · 09-17-2010, 12:52 PM

PS - I am on this treatment indefinitely; not just for a year. My breast cancer is being treated like a chronic illness which requires continuing treatment for the foreseeable future.

JoyceJ · 09-17-2010, 06:48 PM

Hi Jolletta,
I've been on Tykerb and Herceptin for almost 18 months . I have only minor side effects, fatigue, thinning of hair and nails and occasional acne. My heart has remained strong through it all (I'm physically fit age 40). To my knowledge I believe you are eligible for both. This is my first post so I'm including a lot of info because I don't know how to post it with my profile...I started the combo of Tykerb and Herceptin after I was diagnosed with a brain met. for which I had a craniotomy in March of 09. My original diagnosis stage IIIc IDC HER+ er/pr- was Halloween 06. Radical mastectomy 2 tumors, Padget's disease and 10 nodes + Treatment for the initial dx: I entered a drug trial in which I completed 1year of dose dense Carboplatin, dose dense Taxol, Herceptin and Avastin. I contiuced the Avastin and Herceptin for a total of 15 months and remained disease free until the brain met in 09. Unfortunately I had a recurrence of two more mets treated lasted week via gamma-knife surgery. I'm still taking the Tykerb and Herceptin because the rest of my body is remaining clean. I'm fatigued fearful and unfocused but doing well. If anyone has good info rearding brain mets via alternatives to radiation and resection , let me know.
Peace and Health!
Joyce

Barbara H. · 09-18-2010, 02:42 PM

I have been on this combination for a year. I do find it a walk in the park. I have very few digestive issues and eat salads and fruit. The greatest annoyance is that my nails break and are thinner. I am stage 4 and my markers have been normal for a year.
Best,
Barbara H.

my2boys · 10-01-2010, 02:17 PM

I was stage 2B and then I had a local recurrence. I don't know if I am still a 2B or what, but there are no mets involved. I did have to undergo chemo again and now I am currently on Herceptin and Tykerb while going through radiation. The only problem with this regimen is the diarreha. Once you figure out how to control it, whether it be with immodium, lomodil or diet you will be fine. I have to say that the doctor who said Tykerb is no walk in the park was wrong.

Tykerb/Herceptin is doable. It just requires a bit of adjusting what you can/cannot eat and when.

CDE · 10-01-2010, 04:07 PM

My2boys,

So under what conditions or trial were admitted to, to be able to get on both Herceptin and Tykerb. My wife is a stage 2 with an intramammary node positive and would like to do all she can to cure this. She is opting for ACTH at this point but if we can get Tykerb in there too, she would be amenable in trying to do that. Let me know if you can.

Regards,
CDE

Sandra in GA · 10-02-2010, 07:30 AM

Hi Joletta,
I thought I would chime in since I was diagnosed stage III in July '08 and was lucky enough to get into a phase II trial looking at the cardiac safety and tolerability of Herceptin and lapatiib (Tykerb) in an adjuvant setting. As you can see below, I had surgery then A/C followed with Taxol,Herceptin, and Tykerb. I also had radiation. This trial is closed because these results let them go forward with the ALTTO trial which is a phase III. My understanding is that, based on the results on this trial, Tykerb will be approved for early stage BC. As you know it is already approved for late stage.

Marcia mentioned the ALTTO trial and that is the one you could try for. It is a world-wide trial that is enrolling a great number of patients. Dr. Edith Perez and another dr from Denmark and heading it up. The trial I was in was one of Dr. Perez's. She is at Mayo in Jacksonville FL where I have been going for treatment. As I understand patients are randomized into four arms. One gets only Herceptin, one only Tykerb, one together as I did, and one where the Herceptin and Tykerb and give in tandem - one then the other. I guess you would have a 50/50 chance of getting both drugs. Nobody gets just placebos. There are some people posting who are in this trial. I am sure if you did a search you could fine them.

Good luck. Being stage III is scary. I am praying you can find a way you get the Tykerb along with the Herceptin. Herceptin is such a proven drug for us HER2ers, that I would not want to not get it. As for the side effects, they are doable. When I finished the 13 weeks with Taxol added to the mix, it became much better. Even the 5 weeks of radiation wasn't bad with Herceptin and Tykerb. Like My2boys said, you just have to find what foods you have to aviod and for me it was also what drugs to take in what quanity. I had to avoid dairy, fresh fruits and veggies, and take 2 Imodium along with 1 Lomotil at the first stomach roar. But, I certainly would not hesitate taking them together again if the need arises. NED and lovin' it!!!!

Lots of hugs,
Sandra

my2boys · 10-04-2010, 02:38 PM

Hi CDE,

I was put on Tykerb when I experienced the recurrence. Before the recurrence, I was just on Herceptin.

When I had the recurrence, my oncologist put me right back into chemotherapy...AC/TH and I began the Tykerb when I was taking the Taxol. Once the 12 weeks of Taxol were done, she doubled my daily dose of Tykerb. I am now undergoing radiation, plus I am on Herceptin/Tykerb.

I guess that the recurrence, only a few short months after completing Herceptin, was what put me in line to receive Tykerb.

Good luck.

DeenaH · 10-11-2010, 09:57 PM

I hope so, because my onc is wanting to put me on that combo after rads. I finished chemo in August, did bilateral mastectomy last month and will start rads in a couple of weeks. I am on Herceptin now, and my onc wants me to add in Lapatinib once I finish rads. She never mentioned it being a problem.

I was diagnosed Stage IIIC in March, and technically I am cancer free now, but since I did chemo first and still had a ton of cancer after surgery, I don't believe it for a second. I am in the process of getting more opinions, and so far I am getting different answers everywhere. UCSF says skip the Lapatinib, finish Herceptin (1 year) and then enroll in Naratinib trial in SF. Stanford says the same thing, and specifically said he doesn't think it is safe to do Lapatinib/Herceptin combo. I am going to Cancer Treatment Centers of America next week, then Dr. Slamon next month. Everything I am hearing from patients about the drug combo is good though.

my2boys · 10-16-2010, 06:37 AM

I was in the Naratinib trial when I had the recurrence. The problem with that trial is that it is a double-blind placebo trial. I was on placebo, but didn't know it until I had a recurrence and even then I had to fight to be unblinded. Tykerb (Lapatinib) is in the same family of drugs as Naratinib.

Please keep in mind that I finished a year of Herceptin and then I had a recurrence within a few months time, so I needed something else besides Herceptin. The doctors at Memorial Sloan-Kettering in New York are the ones who have me on this combination of Herceptin/Tykerb. Apparently there was a clinical trial that was done here at Sloan, with good results. I was required to do the AC first and then weekly Taxol with Tykerb/Herceptin. I am currently doing rads too. I go for and echo of my heart every three months and it is doing fine so far.

Good luck with your decision.

Nancy L · 10-16-2010, 10:09 AM

I am stage IV and have been on this combo now for 20 mos. I recently had a Pet Scan and am still NED. It took about 9 mos on the combo before the tumor didn't show on the PET. Dr. Slamon is the oncologist I have directing my treatment protocol. He believes in this protocol. I would not say this drug is a walk in the park. But every person is different. It is far better though than the chemo drugs I took when first diagnosed.

Good Luck with your journey. You are so smart to not become complacent. Stage III is a serious diagnosis. I was diagnosed Stage IIIC in 9/04 and all the oncologists I saw told me it was very serious and they were very worried about me. That certainly got my attention. I knew alot about breast cancer because my sister had died of the disease two years earlier. To be honest, I felt I was Stage IV right from the start---they just couldn't see it with the technology that exists today.

KitCat · 10-16-2010, 11:12 AM

This is very intersting thread. I finished chemo 3 weeks ago and will continue on Hercepton every three weeks until May. My onc does not suggest trials for me. Should I push this? I had surgery first, then chemo, Stage 2b. Start rads next week. Any input would be appreciated!

Cathy xo

DeenaH · 10-29-2010, 04:53 PM

I definitely would not want to risk being on a placibo. I talked to my onc again today about the fight to get Lapatinib approved by my insurance. She told me she is all set to get the drug company to help her fight the insurance company. She believes it is medically necessary for me since so much cancer was left behind after chemo/Herceptin. She seems pretty confident that she will win the fight in the end. I just hope it doesn't take too long! I start rads Monday, and my onc is still not sure she wants me on Lapatinib during rads because of skin toxicity. I am still hoping she gets it authorized so I can start on it ASAP.

As for the ALLTO trial, I wouldn't want to give up Herceptin to be on the trial. I want to be on both Herceptin and Lapatinib at the same time. I wonder how long it will be before it is approved for earlier stages. Anyone know?

Jackie07 · 11-05-2010, 04:11 PM

It's hard to say when the treatment will be approved. I'm just glad that the trial did not get scrapped off like T-DM1.