My Turn

[clisa]

Hello To All

I hope I am doing this right as I am not familiar with posting. Bear with me all.

I have been a regular visitor to this site since June'05 when I was dx with stage 3 Her2+ ER/PR - breast cancer. I have found all of the advice and answers to be very helpful.

I will tell you a little bit of my story and then perhaps you can all help me out. The original plan upon my dx was 6 sessions of FEC chemo followed by masectomy, radiation and then Herceptin for one year. During the tests to check that my body was healthy enough to undergo it all it was discovered that I had liver mets. Outside of a rather large lump in my left breast I have had no symptoms or pain with my cancer so this was large surprise to all including my oncologist. The plan was changed to a chemo regimine of herceptin, taxol and carboplatin. After 4 sessions of this - which I tolerated very well - ultrasound showed minimal shrinkage of existing tumours in my liver and breast as well as new tumours in my liver and breast.

My chemo regimine now is AC (no herceptin) which is making me very ill - my oncologist has just sent me for another ultrasound which I will hear the results of tommorrow. Due to the size of my tumour in my breast I can pretty much tell you there has been none to limited shrinkage so far with this chemo - I can very clearly feel it's full size.

I want to go into my oncologist appt. tommorrow with some AMMO - should I be insisting on my surgery, then radiation followed by perhaps more chemo if necesarry. Or should I keep going from chemo to chemo type like the Dr. wants. I know I am not Dr. but it doesn't make sense to me to keep doing chemo at this time - would it not be easier on my body to lose the breast tumours and concentrate on the liver tumours?

I know this maybe sounds naive but I hate following along like a sheep when all my Dr. keeps reminding me about is that I am uncurable and they are just basically delaying my slide downwards.

Any advice my wise sisters ( & brothers ) - I am only 39 y/o and not quite ready to admit to the defeat my doctors feel.


Lisa

[Patty H]

I think it is pretty common to have chemo before surgery. The good thing about continueing the chemo is that it goes through your whole body. Where surgery would just remove the one in your breast and not slow down the others at all. I personally feel that if you can remove the cancer from the breast before it has spread then go for it, but if it has already spread removing it won't stop the spreading. Having confience in your Dr. is important. So talk to your Dr. about what you are thinking and have him explain why he is going the way he is. My Dr. always makes me feel like I am a part of my treatment plan though I leave the final decision to him. Like you, I read all that is going on here and I go in full of questions. My Dr. says he like me being educated on what's going on. let us know how things are going. Patty H

[clisa]

Thank you Patty for your reply - that clears it up a bit. I actually have a very good rapport with my oncologist - she is very informative and very thorough.

My fears come out as frustration and anger lots these days - being told that herceptin doesn't work for me and being taken off it as caused alot of uncertainty about my treatment plans.

Has anyone had longterm success without Herceptin?

lisa

[Becky]

Dear Lisa


With AC, you should not combine with Herceptin but that doesn't mean after it is done or if you start on something different, that you shouldn't add Herceptin to the mix. Sometimes Herceptin can take a little while to work. And you are HER 2+ so they should try it out for a longer time period than it seems they did.

Also, are the tumors still growing or just staying the same? I would discuss the addition of herceptin in your future (after AC is completed as the 2 together can be bad on the heart).

Keep us posted on your progress. Your condition can be controlled and the disease can be a chronic condition that is manageable for a long, long time.

I would also ask about Avastin ( a drug that inhibits tumors to grow blood vessels). This might be a help in your case.

Best regards

Becky

[StephN]

Hi -
You have a tough problem, but that is NOT to say you have no hope. If my med onc was giving me that bunk about just trying to prevent my downward slide from happening too quickly, I would have a serious word with him/her.

Their job is not to depress you, but to try and manage your disease even if it is not curable. This disease and having mets at the outset is bad enough without getting negative stuff from your care team.

The suggestion of Avastin is good - but I am not sure you have it there yet.
You DO have Navelbine. This was a good drug for me in combination with Taxol and Herceptin to put my raging liver mets to sleep for good (so far). I am four years off chemo now after given a poor prognosis. Like you I am hormone neg, and have to maintain on Herceptin without hormone suppressors.

There surely IS a combo of drugs that will knock out your mets and give you some peace of mind. Maybe we can't live forever, but we can fight and try to get as much mileage out of treatment as possible.
Keep chatting with us and let us know how things go, OK?

[Lyn]

I had a negative onc when mine was off sick, she wanted to know why I wanted an MRI because there was nothing that could be done for me, WRONG ANSWER, I made her ring my onc and he told her in about 10seconds flat to give me what I wanted, the MRI found a lump deep in my neck which was treated with Herceptin/Carboplatin/Taxol, it shifted the lump and I was disease free for about a month but so what, as long as we can keep on top of this disease there is no reason why tomorrow they wont't find a simple answer to get rid of it all together. I don't see her anymore either. My original diagnosis in 1998 was for a radical mastectomy, the surgeon did not hold out much hope for me but his words were "we gave it a good jolt with the surgery" he didn't get a clear margin, next time I saw him for a neck biopsy, he was quite different, he said you know you have cancer, go and have a holiday and make the most of it", I planned my funeral on the way home, saw my onc the next day, and his words were, no way there was heaps we hadn't tried yet, so I went on Femara while I took a short holiday, didn't do any good but I didn't know that at the time but at least I knew I was doing something, then I went on Taxotere, that shifted that lump, then a lot of radiation and more chemo, Navelbine next with carbo, shifted that one and then another and so the saga goes on, but my family and friends won't let me give up, just lately I have been ready to quote "chuck it all in" but pain does that to me, I know I will get over it. You have to have an onc you are comfortable with.

Love & Hugs Lyn

[michele u]

I'm wondering if the serum Her2 test would helpful to you. This would tell which chemo combo is working. If the numbers go down then that chemo combo is working, if not, then the can change it. Someone just posted some info about the test. Print it off and bring it with you to your appt. I think if you have liver mets, then surgery right now is not the answer. I think what they are doing by trying to shrink everything first is what the new thing to do is. That's what MD anderson is doing too. Ask about the Her2 test

[clisa]

Thanks to all who responded to my post. Had my regular appt. with my oncologist today - there has been a tiny bit of shrinkage in my one breast tumour but growth in the other tumour. In my liver, they are seeing more areas of concern and overall my liver function tests out poorly.

She has decided to take me off AC chemo and offered me 3 choices - to go back to my herceptin, taxol, carbo mix, to try navelbine, or to try xeloda.

Her reccomendation is for the xeloda so that is the way I am going starting next week (white cell count too low this week to start). I am happy with the decision.

p.s. I will look into that serum test

[StephN]

Glad the appt came up with some new alternatives.
There was a clinical trial last year with Xeloda and Herceptin. It had good results for hard-to-treat mets. One of our members (Esther) had very good results with that. You can search for her posts. Seems to me that you should not give up on Herceptin as often it works better in combination synergistically with other drugs.

Also, Al in Canada's wife has been battling serious liver mets. Look up his posts and see what complementary things they have been doing - she is now on Xeloda as well.

All the best!

Lisa,
I'm having a huge brain fart and can't recall the name nor where to find the name of the drug now being trialed for those in whom Herceptin does not work. It is based on another factor/gene along with the Her2+++...

I'm hoping someone else here will recall and be able to give you that info... so sorry! But perhaps it is something that you would qualify for.

Also, the serum test does sound like a good idea...

good luck to you,
hugs,
pattyz

[Becky]

I think it is Lapatinib - I might have the spelling wrong.


Lisa - Are you getting Xeloda with Herceptin? Steph is right that this is a good combo for many folks with liver mets.

Keep talking to us and hang in there. I think of you.

Becky

[Beth]

Lisa,

I was dx in 12/03 at age 39 and our cases are very similar. I still have a
breast lump along with liver mets. I have failed 3 treatments in combo with herceptin and am currently on a vaccine trial (no chemo) and will get scans in 4 weeks to see how I am doing. I am now 41 and doing very well and feel great. If you want to email me more for more specifics my address is eamegaw@yahoo.com

Never give up!

Beth

[lu ann]

Patty, Is the drug your thinking about called avastin? I know it is being used for advanced colon cancer and there was talk about using it for lung and breast cancer. Blessings, Lu Ann.

( no... not that nor lapatinib. grrrrr! Maybe it'll come to me...

big ol' sigh...................