Need help! Calling brains in.

michka · 12-15-2010, 01:43 PM

Hello Friends. As you know I had the met in my liver taken out by laparoscopy. Well I just got the pathology results:
It is now HER2+++ but ER 20% and PR 0%! I was HER2+++ and ER 90% and PR 20%.The grade is 3 SBR!
My onc said he wanted me on herceptin and tykerb right away. Before I could even think he got me a doctor who put a port in again this afternoon. It was painful. Then his idea is to add chemo and he came up with this strange idea of CMF. A very old chemo isn't it that never worked for HER2s? Am I wrong? Or he also spoke about taxotere. But he said we had time to think of that since I would start chemo in January.
I am starting Herceptin and Tykerb next week.

What do you think of all this?
What a change in the pathology! Have your mets analyzed!
I agree to start H and T because now that I am weakly ER+ maybe it will work better than during the neoadjuvant period.
But why start a toxic chemo since we cannot even measure how it works since right now, I have no other visible tumor. Shouldn t I keep this as an extra weapon and not use it right away or is it better to try to wipe out any new met even invisible since the characterstics of the liver met are so aggressive?

I am down and depressed. I have been crying for 2 weeks now. I don't have hormonotherapy to fight with anymore.
I also had a brain MRI that was clear.

Michka

Becky · 12-15-2010, 03:53 PM

Oh darling girl!

About 1/3rd of mets change pathology! At least it is not triple negative now. I can't comment on CMF but the F part is what Xeloda changes into after it is metabolized in the body so we know that part works well with both Tykerb and Herceptin. I think you onc wants to add something just in case there is a cell or two left behind. I cannot comment on the best route to go - chemo now or not but there are plenty of people who I know will respond. Whatever you do, don't despair! I am thinking about you.

tricia keegan · 12-15-2010, 04:37 PM

Michka,

I wish my brain knew and understood enough of this to help you, but sadly I can only send my good wishes and lots of ((((hugs))))

As an after thought I do have a friend that took CMF twenty odd years ago and is still clear, not sure if she was her2+ as they did'nt test then but this regime worked for her

ammebarb · 12-15-2010, 05:22 PM

Hi Michka. I'm also one who doesn't know enough to suggest anything, but I did a whole year of CMF chemo more than twenty seven years ago for breast cancer. That was before Her2, so I don't know if I was positive. Just wanted you to know that I found the regimen tolerable enough to work as a kindergarten teacher through the entire treatment and I have had no recurrence. Hope that you find that whatever chemo is given is without side effects, but ravages on any stray cancer cells. Thinking of you.

Barb A.

Rich66 · 12-15-2010, 10:51 PM

Were margins clear?
Can you get a circulating tumor cell test? In light of SABC '10 info, might be some help on gauging how aggressive to be.
In a circulating cell context, I wonder if changing mets pathology really means that the previous pathology should be ignored...i.e. maybe hormonal is still on the table...especially since her2 therapies can charge up the ER side.

michka · 12-16-2010, 01:44 AM

Thank you for answering Tricia, Becky, Barb and Rich. I was hoping more answers and opinions.
If CMF is partly like Xeloda than why not Xeloda? What does the C and the M bring?
Rich, the margins were clear. I was just thinking the same about hormonotherapy. Why not stay on my low dose of Tamoxifen at the same time? The problem with AI is that there are no different dosings and I suffer so much from them. But I am ready to try again if necessary and better than tamoxifen. I had only switched in October after 3 years of AI or faslodex. I am going to ask about CTC.
Is there anybody out there living after liver mets on a long period who can tell me his or her treatment story?
The onc told me my pronostic was around 20 months. He is sending me for another liver MRI in 3 weeks before starting chemo.
Love to all. Michka

Chelee · 12-16-2010, 04:08 AM

michka,
I'm sure I won't be much help either but I do know CMF is an older regimen that was commonly used. In fact my chemo nurse had bc 17 yrs ago and she used CMF and has remained NED all this time.

I can tell you "mamacze" (Kim) had liver mets. She was put on Navelbine/Herceptin combo and has remained NED since 2004...she just maintains on Herceptin alone.

She's doing great...I'm sure she wouldn't mind if you sent her a PM. There is also our dear Chrisy. She recurred several times with liver mets. I know once she used TCH...and now for almost the last 3 yrs she has been on T-DM1 and remained NED this entire time. There are others I just can't think of them right now. But hang in there...you have options.

Chelee

michka · 12-16-2010, 04:20 AM

Good ideas Chelee. Thanks! I hope you are OK. Hugs. Michka

Sheila · 12-16-2010, 05:41 AM

Michka
Chrisy and Stephanie are the experts on Liver Mets....I think Steph had great results with Navelbine and Herceptin....and i know Xeloda (which turns into 5fu) and Herceptin would be another promising regimen...then with the Tykerb added in, you should see dramatic results. I dont understand the CMF regimen either...maybe ask if any of the others would be just as beneficial and lest toxic to you....also Chris has had stellar results with TDM-1 for her liver mets....it seems to kick butt on liver mets. You are in my thoughts and prayers Michka...the right treatment will be found and you will be back in the pink so to speak!

Lori R · 12-16-2010, 06:36 AM

Dear Michka,
You will get through this!!!! Kudos to your Dr. for using both Herceptin + Tykerb. I believe some of the news from San Antoino supported attacking the cancer from multiple directions. So you can breath easier knowing that you are taking immediate action.

Another good sign, is that your Dr. had the pathology tested. Now you can fight back in the best manner possible.

While the thought of another round of chemo is daunting, it is doable and as Sheila said, Chrisy had a recurrance and is NED. While my history has had a few more ups and downs, I have had liver mets for 40 months, am back to NED and do NOT intend to check out anytime soon. So....please, please ignore any estimate regarding your prognosis. There is no way that 20 months is close to accurate.

I encourage you to talk to your Dr. about the choices he's making and ask him to explain why CMF. Using Herceptin + Tykerb shows that he is a relatively current thinker. You may want to pose some of the options other have been on such as Navelbine. Make sure that you understand the choice and feel it is right for you.

You've covered a lot of ground very quickly. I am so proud of you!!!! Give yourself space to feel sad. Not much time has passed and it just is something that you have to slowly absorb.

When you feel better, please update us on your laproscopic procedure. Was it a liver resection or something less invasive?

Hang in there!!! Love Lori

Ellie F · 12-16-2010, 07:48 AM

Hi
No words of wisdom regarding your liver met but just wanted to support what Lori was saying about prognosis. The truth of the matter is they are just numbers and no oncologist can know how your individual biology will respond.Hang on in there, we are all with you!
Ellie

KDR · 12-16-2010, 12:46 PM

Michka,
I agree with Ellie.
I am also Stage IV, with liver mets. You just keep going, don't look back...take each day as it comes.
Sent with understanding and love,

kk1 · 12-17-2010, 04:43 PM

Hi Micha;

I've been going strong for almost 7 years with occasional liver mets. Most of the time when they flare up I do herceptin and xeloda plus something. They usually resolve completely e.g. NED for 18-24 months and then sometimes grow back. When that happens I have it surgically removed, if I am NED everywhere else. In between I am on maintenance Herceptin and Tykerb plus and AI. Quality of life is excellent with few side effects.

You have a lot of options available and there is really no way for them to predict how you will respond or how long you will live. My Onc recently told me he has accumulated quite a large number of stage IV patients (Her2+, ER+) that have been on these targeted therapies and considered minimally treated for 8-10 years with out the need for the traditional harsh chemo's. He always tells me it could be tomorrow or 20 years from now, too hard to tell with the rapid changes in available drugs.

kk1

Lien · 12-17-2010, 05:08 PM

I know of two women on another list who had liver mets and have been living with them or even NED for years and years. I believe one of them has been dancing with NED for over 12 years.

The 20 months estimate is based on old research. Those numbers were from before Herceptin, Tykerb, cryosurgery, radiosurgery, aromatase inhibitors, Faslodex, Xeloda etc. So it's a whole different ballgame now.

And even then, nobody could predict how long someone would survive. And there's a huge difference between one small liver met and lots of mets throughout the body. So please forget about the 20 months. It's a statistic based on outdated info.

You live as long as YOU live. Not as long as some doctor expects you to live. Focus on growing old with this.

Jacqueline

imdavidson · 12-17-2010, 06:43 PM

Michka, thinking of you.

Trish · 12-18-2010, 01:22 AM

I'm really confused about the use of anti hormonals with chemo. Does anyone know if it is contra indicated? I have progressed on both Tykerb and Herceptin. I am currently having them both with Abraxane but wonder if I could have Arimedex or tamoxifen as well. Femara is pretty expensive in Australia at present.
Trish

StephN · 12-18-2010, 11:34 AM

Dear Michka -

Glad you had the procedure and have a new path report to go on. I must say that your onc was WAY out of line telling a patient who has one small liver met that she probably has less than 2 years to live! He must be from the Magdalenian times ... send him back to caves in Les Eyzies!
You have an excellent chance to live to be a "woman of a certain age"! Put his stupid comment out of your mind.

I am not hormone positive, so can only go on what I know other people I know have been prescribed. Maybe you can post just the one question regarding your new hormone status, and those who understand this area better can answer.

What tumor marker(s) do you get? Do you have a number from before and after the resection? That may to be something to follow that will indicate how you are doing.

Navelbine has worked very well in concert with Herceptin against liver tumors for many of us on this board. I also am not clear as to why your doc wants to put you on the "scorched earth" chemos again, when we have better treatments and understand which patients benefit from which drugs.

Can you get a second opinion from someone at the American Hospital?

Rich66 · 12-18-2010, 01:15 PM

Many oncologists are trained to avoid combining chemo and hormonals. But like concerns about combining hormonals with radiation, the concerns may be fading..or context dependent:
http://her2support.org/vbulletin/showthread.php?t=43403

michka · 12-18-2010, 01:20 PM

Thanks Steph. Your answer made me laugh! I didn't laugh a lot these last days. You know France so well if you even know the prehistorical caves down south!
My thinking at this point is the following after having read all your answers and all the information that our wonderful Hopeful keeps feeding the ASCO thread:
I will ask for a new test of my markers as you suggest and a CTC test as Rich suggested. Just to see where I am starting from.
I can start Herceptin+Tykerb. I should add in Navelbine. How long? I don't know. I have nothing to measure.
The good point is that being less ER+ H and T combination should work better although on the ASCO posts I read: "More than every third patient changed ER and PR status and one patient in ten changed HER2 status during tumor progression....patients loosing ER had an almost two-fold increased risk of dying compared to concordant ER positive patients".
So I should maybe hold on to my 20% ER+ with maybe Tamoxifen.
Does this sound like a plan I could discuss with the" caveman onc?".

I am not fare. he is a terrific guy. He got me Tykerb when very few could get it in France. That's why I was so upset when he spoke about CMF! What was in his head. Well, I'll see on Tuesday when I will start H and T and see him again.
Any comments are welcome. Love to all. Michka
PS: Steph, I hope you are planning your next trip to Europe and will pass by Paris!

Rich66 · 12-18-2010, 01:33 PM

You should be able to ask the onc why CMF. There might be perfectly valid reasons to do so. I know there is at least one study where combining CMF with Tamoxifen seemed helpful. And if the only known met is 18mm, might be thinking it was dealt with by local therapy. (body checked by PET, brain by MRI?)But I would imagine you would continue with herceptin and or tykerb regardless.