Intro - and Herceptin and Tykerb for 30 yeard old with stage iv, mets to liver

[flachica]

Hi all. I have been reading this forum for many months, but haven't ever posted, so hello!! Now that it appears my HER2 status is being problematic in terms of maintaining remission, I think it is high time I get involved with you intelligent HER2 ladies!!

I was diagnosed with stage iv cancer as my initial diagnosis Christmas Eve last year. I had abdominal pain and went in. The doctor thought it was my gallbladder, but that came out as clear on an ultrasound. My liver, however, was found to have "innumerable, too many to count" lesions. A liver biopsy later, and a bunch of other tests to reveal the primary, I was diagnosed with advanced breast cancer. I also had a small spot in my L3 disc. Previously I was the picture of health! Weren't most of us though, right??

I was started on TCH on 1/4/2010. I had a scan after three treatments. My old oncologist mis-read that scan and said I'd had progression!! I could NOT believe that I'd had progression on TCH, so I began to hunt for a new oncologist. In the meantime, my old onc had me try to get into the EMILIA/TDM-1 trial. I did, but got randomized to Tykerb/Xeloda and had 2.5 cycles of that before my new oncologist, whom I had switched to (she's at Moffitt) said stop the trial, I looked at your scans (I had scans to get in the trial) , you are in remission - you need to continue on TCH! I was so thrilled to get that news, I just knew it!! I had really no side effects from chemo except hairloss and fatigue for a couple days at the end of treatment.

She continued me on TCH for 3 more treatments, and then we started just Femara (I am way menopausal based on my FSH score, which is tested every 3 weeks), Zometa and Herceptin. I have been on Femara, Zometa and Herceptin since July 19 (from June 24 - last chemo - to July 19, I was only on Herceptin and Zometa).

Had my first scan since starting this therapy this past week and got results, and....I had progression in several spots in my liver. I am devastated and very scared and frustrated. I had hoped to maintain a response on hormonals and targeted therapies because there are no side effects for me!

My onc has said something to the effect (I don't remember it all, I was a bit out of it at the scan result appointment) that when HER2 signaling is so strong that hormonals won't work. So I deduce from this that my main problem is my HER2 status but also that hormonals aren't able to work right now. My FISH score for HER2 was I think 8? Whatever it was, it was very very high.

So my onc has put me on Tykerb, along with Herceptin and Femara and wants to rescan me in 6 weeks. I know that Tykerb/Femara is an approved combo and that Tykerb/Herceptin is too - and my onc said my insurance may ask why I am on all three but we will deal with that later!

Is anyone here in this combo? Is any on Tykerb/herceptin after progression on just Herceptin alone? What has been your experience in terms of your disease/scans, etc.? Thank you for your help. I have seen that this board is a wealth of knowledge - - - thank you again.

[tricia keegan]

Hi Flachia,

I'm sorry I can't answer your question but know many of the members here will be along soon to offer advice to you.

I just wanted to welcome you here and hope you find the right combo asap to help you. I love your avatar too, I was a livestrong volunteer at the global cancer summit in Dublin last year and enjoyed every minute

[chrisy]

Hi,

what a roller coaster- it was a little hard for me to follow what you've been doing!

If I understand correctly, you were on TCH and it did work but because the scan was misread, you thought it didn't and entered the EMELIA trial where you were in the Tykerb/Xeloda arm then back to "finish" 6 cycles on TCH after the scans were reread. Yikes.

At a minimum I imagine you've learned to ALWAYS get strong confirmation when scans indicate a treatment change is in order!

So now your onc is recommending Tykerb/Herceptin/Femara. This is not a super common combination but mainly because Her2+ and ER+ is less common (I for example am ER/ER neg and Her2 positive).

I think you should go back to your oncologist and ask for a thorough explanation of why she recommends that path - because it is important that you understand and agree. Perhaps what your onc meant about the hormonals not working is that, since you have such strong Her2 positivity, that overpowers the ER blocking therapy and she wants to try hitting the Her2 pathway harder.

My thoughts (and remember I'm not a doctor, just a patient!) are that if there is not too much disease, it could be a good thing to try provided you get early follow up as you say (scans at 6 weeks).

You've got a "target rich" environment, and if you can find targeted therapies that are effective I agree that's the way to go. Tykerb and Herceptin are both Her2 targeting agents but they work differently and Tykerb also targets other parts of the Her pathway (Her1 if I remember correctly). That's why early studies are showing synergy with Herceptin and Tykerb.

There has been some indication in studies that blocking either Her2 or ER pathways can actually activate the other one, so blocking both is important. The key actually is to block ALL the pathways at once.

The issue of insurance is likely being raised because although all three are approved therapies, Tykerb/Herceptin in combination is not technically an "approved" combination and some folks have had their insurance company balk, but have been able to successfully challenge it.

I know that there are others here who have done very well with Herceptin/Tykerb (some with Avastin added) and I hope they will chime in.

The whole thing stinks, and any setback can feel devastating (I know this from experience, too). But you have many options, are being cared for at an excellent facility, and I sense you are not one who is going to give up easily!

Keeping my fingers crossed that the triple target therapy will work well for you.
Chris

[Barbara H.]

I have been on Hereptin/Tykerb for the past year and this combination is working for me. My insurance did give me a hard time, but i was able to appeal their decision and eventually won. I was also on TDM-1 for two years. Unfortunately the FDA has put approval on hold for two years. This is devastating news for many stage 4 patients because it is one of the best drugs available, is targeted therapy, and is very well tolerated. I suggest that you read my prior posts.
Best wishes and I hope that the Herceptin/Tykerb combination works for you. I am not taking a hormonal drug because I am PR/ER negative.
Barbara H.

[Jackie07]

From another thread ('chemo with Herceptin and Tykerb') I saw the links to clinical trials - including this one:

http://oncore.mc.vanderbilt.edu/sip/SIPControlServlet#

I think your oncologist is on the cutting edge and I hope (believe)there won't be any problem for you to get this combo.

[Jackie07]

Protocol No.VICCBRE0779

Principal InvestigatorMayer, Ingrid
Phase
Phase II
Age Group Adult
Scope Local Secondary Protocol
No.8LAP109691

Title A Phase II Trial of Lapatinib and Trastuzumab with or without Endocrine Therapy in Locally Advanced HER2 Overexpressing Breast Cancer Patients (SPORE)

Objective To determine the pathologic response to neoadjuvant lapatinib with trastuzumab

Description Women are being asked to take part in this research study because they have a type of breast cancer that contains the HER-2/neu protein (HER-2/neu positive).

The purpose of this study is to determine if Lapatinib (Tykerb®) and Trastuzumab (Herceptin®) used together for 12 weeks can shrink HER-2/neu positive breast cancer tumors before surgery. If so, this may allow for a lumpectomy instead of a mastectomy. A lumpectomy removes the entire tumor without removing the whole breast. A mastectomy removes the whole breast with the tumor.

Several clinical studies show that lapatinib attacks breast cancer cells that have two proteins called EGFR and HER-2/neu. These proteins are important for the growth and survival of breast cancer cells that make these proteins. Lapatinib is approved by the Food and Drug Administration (FDA) for the treatment of advanced (metastatic) breast cancers with the HER-2/neu protein that have stopped responding to trastuzumab. The FDA has already approved trastuzumab, which is standard of care treatment for both early and advanced forms of HER-2/neu positive breast cancer. Some breast cancers also need the female hormone estrogen to grow. Patients with these hormone positive cancers will also take a drug called Letrozole (Femara®). Letrozole is FDA approved as a standard treatment for post-menopausal women with hormone-positive breast cancers for both early and advanced forms of breast cancer. Letrozole slows or stops the growth of cancer cells by decreasing the amount of estrogen produced in the body.

Up to 64 women will be enrolled in this study. Lapatinib will be administered at 1,000 mg daily together with a standard weekly dose of trastuzumb. Bidimensional tumor measurements will be performed at baseline, and at the end of week 4 and week 8. At week 8, breast ultrasound measurements will be performed to ensure no disease progression. At any time, the patient will be taken off study protocol and offered standard therapy if there is any clinical or imaging evidence of disease progression. At the end of the 12 weeks, further treatment will depend on the treating physician. Repeat mammograms and breast ultrasounds will be performed. The patient will be offered surgery if operable and a surgical specimen will be obtained. If the patient is not operable and desires breast conserving surgery, an additional biopsy will be obtained. She could then continue on chemotherapy with trastuzumab and weekly paclitaxel for an additional 12 weeks, as a standard of care regimen. She will be offered surgery at the completion of her chemotherapy with surgical specimen collection at this time. Further treatment will be at the discretion of the treating physician.

[kk1]

I have been on the HTF for several years to keep me stable when no visible lesion is present in my liver, however on the 2 occasions that it reappeared in my liver we added Xeloda the combo in place of the AI. You might ask your Onc why he/she is not suggesting a Tykerb/Xeloda/Herceptin Combo which is a little more aggressive but since you are so young it might be a good idea. It's was a relatively easy combo to tolerate.

[flachica]

Wow. Thank you ladies. I know I posted at the right place!! I have been on the Tykerb now for almost 3 weeks. I keep hearing what a great combo it is – I sure hope so. I hope the Tykerb does it’s job.
It’s just so scary because I feel like if this doesn’t work I will be on chemo forever, despite being Her2+. Actually I probably will. I am curious why she wouldn’t put me on Xeloda…I will ask at my November appointment. I was on briefly and erroneously before and I actually did not tolerate it very well, but I was on 3,600 mg and she only puts people on 2,000 mg in her clinic.
Thank you again for your posts and information. I appreciate it…I will keep you updated.

[jellybean]

I hope your treatment is going well. If you are 30 years old and on Femara, you should also be receiving Zoladex or Lupron to surpress your ovarian function, if you have not had your ovaries removed. If your ovaries are functioning, Femara can actually stimulate cancer growth. I am 48, and my onc won't risk taking me off Zoladex. I am not sure why frequent monitoring of estradiol level would not be enough, however.

[Lani]

Doubt you'll find a trial protocol for it combined with your other drugs, but Dr. Slamon thinks Faslodex works best in her2+er+s as it works via a different mechanism than AIs. It actually causes the estrogen receptors to be degraded PERMANENTLY on all cells it reaches (whether or not that includes the brain is a topic I have researched several times--the manufacturer did not seem to know). If/when one stops taking it, all new cells made after that time will have ERs, but as you don't make a lot of new brain cells, this topic seems "rather important"

It is approved for those who fail other antihormonal treatments, so just keep this info in mind.

It does not seem to have significantly more side effects than AIs and it is only given by shot once a month.

Just fyi

[ElaineM]

Welcome aboard the her2 train Flachica.
The other members have certainly shared alot of helpful information with you. I wish you all the best. My best advice is keep putting one foot in front of the other and keep going. Be your own best advocate. It helps alot.
After reading all the above posts I learned quite a bit myself. Thanks everyone.