Sister's Fight

[MaggieD]

Hello Everyone,

I am new to this forum and appreciate many of you sharing your thoughts and experiences. Note: I am reposting here from the Newcomers area based on some recommendations to do so.

My sister had a recent breast cancer mets diagnosis and we have come through several crossroads recently. Her original cancer was in December 2002 at age 40 (mother of 4 kids, all under 10 at the time). She was diagnosed with DCIS, HER2 3+, ER-/PR-, Stage 1, no lymph node involvement. After mastectomy, she elected to have A/C chemo “just in case”. She did very well after that and even ran a marathon so obviously we all thought things were OK.

In Nov 2005, she was diagnosed with a breast cancer reoccurrence (sternum and some very tiny nodules in the lungs). She had a bone biopsy which confirmed breast cancer, however the sample was too small to reconfirm HER2. She received Herceptin and Navelbine weekly, and Zomeda monthly. In March 2006, there was a small lesion found in the liver which was believed to be missed in earlier scans; tumor markers continued down. Scans in May confirmed some progression in both the lungs and liver (also small lesions found in ribs); tumor markers up slightly. She requested a brain scan (asymptomatic) and numerous small spots were found. She received whole brain radiation, followed by Herceptin and more chemo (a study-drug which had shown good response rates in similar cases including a friend of hers). Unfortunately, this chemo did not work very well for her. She was sick from it most of the summer. She is now on daily lapatinib, weekly Herceptin, and monthly Zomeda. She finally looks good and feels like her old self again. She has no symptoms from any of the above.

She recently had some new scans to determine if this treatment is working; we have an appointment with her doctor on Tuesday. Even though I remain hopeful, I can’t help but feel like this whole thing has gotten away from us. I scheduled another appointment for her this month at a different medical center just to get a different perspective on things. At this point, I’m not sure what to ask about at either visit. We have asked so many questions before (even some of these), but this is what is on my mind now…

- is there any hope to bring this under control? the liver mets seems to be of the most concern although remain asymptomatic….is targeted treatment possible given her situation? how has that worked out for others?

- should she have another biopsy to recheck HER2 status? could her HER2 cancer actually be under control and has a different type emerged?

- should we conclude that Herceptin is not working anymore? is there any way to improve her response to Herceptin (different dosage, etc)?

- can lapatinib be effective enough with Herceptin, or should this eventually be combined with a chemo like Xeloda (assuming lapatinib continues to be available to her)?

- if this treatment is not working, what next?

I have learned a lot by reading this forum, but certainly haven’t had a chance to look through everything. I would appreciate any insight or thoughts on approaching these appointments, things that we might want to check into, ideas on next steps, etc.

Thanks for listening…

[Bev]

I can't help much, I'm posting so your thread stays current. I think the scan results will tell you something. Best wishes to you and your sister. BB

[Cathya]

Maggie;

Given your sisters age and situation I would suggest she try to get an appointment with Dr. Dennis Slamon at USC (I think that's where he is). Email Jean from this site who has seen him for a consult. I don't know where your sister lives but her case sounds aggressive and he is the best. Joe would also have information. Keep us informed.

Best regards,

Cathy

[Sherryg683]

Has she received radiation to the liver area yet? Why can't they try this if there's just one or two lesions. I would even question about surgery, couldn't they just operate and remove it...the liver regenerates. My friend had colon cancer that had metasticized to her liver...they removed a pretty big area on her liver, although it really didn't help, her disease had progressed too far. Right now they are doing quite a few trials with tykerb (lapatinib) and Xeloda, in fact I thought this was pretty much the only way you could receive tykerb right now, in combination with Xeloda...don't know if this helped any..sherryg683

[chrisy]

Dear Maggie,

Wow, what a lot to deal with. I can see why you might feel as if the whole world is spinning out of control! It does sound like she has thrown a lot of different things at it, and it can be discouraging to still feel like you don't have a handle on it.

There are a lot of very knowledgable folks on this board, and I'm sure you will get plenty of good suggestions. I'll give you my reaction to some of your questions, but I'm no expert (just a patient!).

I do/did have liver mets, diagnosed in 2004 which have been stable/gone since 2005. I was curious your sister did not have a taxane, which has good activity in her2+++ cancer and is synergistic with Herceptin. I'm a big fan of Taxol because it slapped the cancer down well, and of course I loved the haircut....


First of all, there is always hope! The fact that your sister is looking and feeling well is not a small deal!

You will know more how the current regime is working when she gets new scans. Hopefully you will see things headed in the right direction.

I should probably stop there and leave the harder questions for some of the folks who are more knowledgeable about the research, but I feel chatty tonight...although I do think that "do not lose hope" is the best advice of all.

If she has not already had a "second opinion" I would definitely recommend it. Go to a comprehensive cancer center, ideally seeing someone who specializes in breast cancer. She has apparently been given some cutting edge stuff, but it always helps to get another perspective. Just be ready to have multiple opinions. The rule of thumb is 2 doctors = at least 3 opinions!!!!

Re targeted treatment for the liver mets, I assume you are talking about local treatment - RFA or surgery? It is unlikely she would be a candidate for this type of treatment with so many other areas of disease. She may qualify for something like chemoembolization where they place the chemo directly in the liver?

Re should she be retested/new biopsy? Ideally if there is tissue, she would get it retested. If not, you can get a read on the her2 situation with the Bayer Her2 serum test. It is a blood test which measures the amount of Her2 in the blood. This can be used similar to other markers to reasure response to chemo.

Re is herceptin not working/can you do anything to increase efficacy? Hard to tell, she has had so many different agents. There are some nutritional strategies which in theory downregulate Her2 and would help get better response from herceptin or delay resistance. Look for the threads on olive oil and GLA(primrose oil) as these seem to have considerable research. Here is one:
http://www.her2support.org/vbulletin/showthread.php?t=20595&highlight=menendez

Omega-3/6 balance (more fish oil, less bad vegetable oils) also seems to be a big factor. There are lots of discussions on this in the forums. Try searching "Omega-3"

There's also many here who ingest lots of green tea, curcumin, others (myself included) - but you do need to be very careful with any supplements while getting chemo and always consult her doctor. And CoQ10 to protect the heart while she is on herceptin.

Re can the lapatinib and herceptin alone do the trick or will she need to add chemo? That is the question!!!! I think this is still in trials to get the data on that...so it sounds like your sister is the pioneer. Reality is, at some point she will likely need to add chemo - but the good news is that they might be synergistic with the tykerb and herceptin.

So many question, too few answers. Try to relax, see what the scans say - maybe she will get stellar results and you won't have to worry about the "what's next" question for a while. It is possible to get control of the mets, lots of people have had to try several different combinations before hitting the "jackpot".

I know it's hard to stand by watching your beloved sister go through this. She's lucky to have you. Keep the faith. Don't give up.


Chris

[MaggieD]

All,

I really appreciate the feedback that you provided on this. Your comments/suggestions really helped me to come up with much better questions for the oncologist. I have gone to so many appointments and was sort-of at a low point with this one, probably because I was expecting more bad news...so thanks as well for your supportive words.

Well, some good news -- the scans showed that her disease is stable thus far on the lapatinib/herceptin combo. She will have another set of scans in 4 weeks and we are hopeful for unchanged or, God willing, some improvement! A few other follow-ups based on your comments:

- Cathya, thanks for the idea to contact Dr Slamon...will investigate this. We are on the East Coast / Boston area, but possibly he would do a phone consult. I will let you know what I find out.

- Sherryg683, I asked about various liver treatments based on your suggestion and a booklet I picked up on liver cancer listing all the possible treatments (NCI publication - "What you need to know about Liver Cancer). The oncologist said that all these procedures would only treat the tip of the iceberg in her case and would have risks. I think he might have been more willing to consider this if she was symptomatic. This is something I would like to explore further in a 2nd opinion because she only has 1 lesion. It is hard to know if it makes more sense to be proactive to deal with that tumor or wait-and-see if she will hit on the right drug combo that will improve things systemically.

- Chrisy, I appreciate all the time you took in your reply...honestly, helped me a great deal right when I needed it! I asked if the BMS study drug my sister was on previously was a taxane. The oncologist said no, but it was similar so that is one of the reasons why we did not move onto Taxol next (the other reason is that she was getting so weakened by chemo that taking a break with lapatinib/herceptin seemed to make the most sense). I am so glad that Taxol worked so well for you!! I will be looking into the other suggestions that you pointed me to...thanks!

- I asked about the HER2 status of her tissue sample and if that should be retested or she should have the Bayer test. The oncologist said that we could take another biopsy now, but her cancer definitely acts like an HER2 cancer (small tumors, very aggressive, tends to return) and that he still wants to give her Herceptin regardless....which probably makes sense. After we left, I was wondering if I should have also asked if there was a way we could determine if she is still ER/PR-. Can that be done via a blood test?

I asked the oncologist if some people have to try several different treatments before hitting the "jackpot" as Chris stated, and he said this happens "frequently". This is a good reason never to lose hope!

Any others thoughts/ideas are always appreciated. I will keep you all updated on progress.

Maggie

[karenann]

For both the er/pr and the Her2 status, they have to test the tumor. It's not a blood test.

Karen