Need help! Calling brains in.

[michka]

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]

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]

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]

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]

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]

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]

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 (http://her2support.org/vbulletin/member.php?u=168)" (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]

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

[Sheila]

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]

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]

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]

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]

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]

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]

Michka, thinking of you.

[Trish]

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]

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]

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]

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]

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.

[Jackie07]

Did a quick search and found this trial result:

Lancet Oncol. (javascript:AL_get(this, 'jour', 'Lancet Oncol.');) 2010 Mar;11(3):266-74. Epub 2010 Jan 13.
Predictive markers of anthracycline benefit: a prospectively planned analysis of the UK National Epirubicin Adjuvant Trial (NEAT/BR9601).

Bartlett JM (http://her2support.org/pubmed?term=%22Bartlett%20JM%22%5BAuthor%5D), Munro AF (http://her2support.org/pubmed?term=%22Munro%20AF%22%5BAuthor%5D), Dunn JA (http://her2support.org/pubmed?term=%22Dunn%20JA%22%5BAuthor%5D), McConkey C (http://her2support.org/pubmed?term=%22McConkey%20C%22%5BAuthor%5D), Jordan S (http://her2support.org/pubmed?term=%22Jordan%20S%22%5BAuthor%5D), Twelves CJ (http://her2support.org/pubmed?term=%22Twelves%20CJ%22%5BAuthor%5D), Cameron DA (http://her2support.org/pubmed?term=%22Cameron%20DA%22%5BAuthor%5D), Thomas J (http://her2support.org/pubmed?term=%22Thomas%20J%22%5BAuthor%5D), Campbell FM (http://her2support.org/pubmed?term=%22Campbell%20FM%22%5BAuthor%5D), Rea DW (http://her2support.org/pubmed?term=%22Rea%20DW%22%5BAuthor%5D), Provenzano E (http://her2support.org/pubmed?term=%22Provenzano%20E%22%5BAuthor%5D), Caldas C (http://her2support.org/pubmed?term=%22Caldas%20C%22%5BAuthor%5D), Pharoah P (http://her2support.org/pubmed?term=%22Pharoah%20P%22%5BAuthor%5D), Hiller L (http://her2support.org/pubmed?term=%22Hiller%20L%22%5BAuthor%5D), Earl H (http://her2support.org/pubmed?term=%22Earl%20H%22%5BAuthor%5D), Poole CJ (http://her2support.org/pubmed?term=%22Poole%20CJ%22%5BAuthor%5D).
Endocrine Cancer Group, Edinburgh University, Edinburgh, UK. John.Bartlett@ed.ac.uk

Comment in:

Lancet Oncol. 2010 Mar;11(3):216-7. (http://her2support.org/pubmed/20202603)

Abstract

BACKGROUND: The NEAT/BR9601 trial showed benefit for addition of anthracyclines to cyclophosphamide, methotrexate, and fluorouracil (CMF) as adjuvant treatment for early breast cancer. We investigated prospectively predictive biomarkers of anthracycline benefit including HER2 and TOP2A.

METHODS: 1941 tumours from 2391 women recruited to NEAT/BR9601 were analysed on tissue microarrays for HER2 and TOP2A amplification and deletion, HER1-3 and Ki67 expression, and duplication of chromosome 17 centromere enumeration probe (Ch17CEP). Log-rank analyses identified factors affecting relapse-free and overall survival, and regression models tested independent prognostic effect of markers, with adjustment for known prognostic factors (age, nodal status, oestrogen-receptor status, grade, and tumour size). The predictive value of markers was tested by treatment interactions for relapse-free and overall survival.

FINDINGS: 1762 patients were analysed. 21% of tumours (n=367) were HER2 amplified, 10% were TOP2A amplified (n=169), 11% showed TOP2A deleted (n=191), 23% showed Ch17CEP duplication (n=406), and 61% had high (>13.0%) Ki67 (n=1136). In univariate analyses, only HER2 amplification and TOP2A deletion were significant prognostic factors for relapse-free (hazard ratio [HR] 1.59, 95% CI 1.32-1.92, p<0.0001; and 1.52, 1.20-1.92, p=0.0006, respectively) and overall survival (1.79, 1.47-2.19, p<0.0001; and 1.62, 1.26-2.08, p=0.0002 respectively). We detected no significant interaction with anthracycline benefit for Ki67, HER2, HER1-3, or TOP2A. By contrast, in multivariate analyses, Ch17CEP duplication was associated with significant improvements in both relapse-free (HR 0.92, 95% CI 0.72-1.18 for tumours with normal Ch17CEP vs 0.52, 0.34-0.81 for tumours with abnormal Ch17CEP; p for interaction=0.004) and overall survival (0.94, 0.72-1.24 vs 0.57, 0.36-0.92; p for interaction=0.02) with anthracycline use.

INTERPRETATION: In women with early breast cancer receiving adjuvant chemotherapy, the most powerful predictor of benefit from anthracyclines is Ch17CEP duplication. In view of the location of HER2/TOP2A on chromosome 17, Ch17CEP duplication might explain the inconsistencies in previous studies of factors predicting benefit from anthracyclines.

FUNDING: Cancer Research UK and the Scottish Breast Cancer Clinical Trials Group.
Copyright 2010 Elsevier Ltd. All rights reserved.

[Trish]

Thanks Rich-after reading the info I think I will ask for Arimedex to go with my Abraxane, Tykerb, Herceptin cocktail.
Michka the 20 month prognosis is nonsense-excuse the non diplomatic language. Even I have thrived for 4 years post met diagnosis and I have never been one of the lucky NEDers. I have had a lot of chemo but a good quality of life and I am hoping to last long enough to try TDM-1. I am hopeful you will be one of the NED respnders. All the best
Trish

[michka]

Thanks Jackie. It is really interesting but how to test "Ch17CEP".? Maybe he has a way since he also works in a big Hospital in Paris called Pompidou were they have research and run trials. But I doubt it.
And take such a toxic chemo with nothing to measure progress seems crazy. Unless it can be done by the CTC tests?
It's an onc who accepts to explain and discuss. And he knows that I will do nothing if I don't understand.
My body was destroyed by the FEC and then the Taxol. I never was ever the same and suffer ever since. So I just can't imagine going for CMF or Taxotere in the blind. He wasn't my onc at the time.
I will take the article with me! My onc knows I am half american (I know! my English should be better but I have been living in France for 50 years out of 54!) so when I come in with my questions or articles, he makes believe it gets him upset and in fact he spends time to understand what I read and answers.
And what I like is often he answers "well we just don't know".
The last time I asked him what France was doing on TDM1. He said he would answer the next time because he wanted the latest update.
Thanks again Jackie! Michka

[michka]

Jackie,I read the answer you sent to KDR about ER- PR+. Thank you so much for doing researches. I am unable to find such information without you or Rich or Hopeful and so many others... I am so grateful.

Does this mean, my new met being 20%ER+ and 0% PR+ my idea of still hanging
on to an anti hormonal therapy is useless?
Michka

[Jackie07]

The use of Tamoxifen seems to have been changing due to new findings.

When I was first diagnosed in 2003, my oncologist said I was ER- PR- and couldn't use Tamoxifen. But then two other doctors in a one month period of time (after I had finished chemotherapy) all were ready to start me on Tamoxifen. I thought the first one was crazy. But I contacted my oncologist's office after another doctor had mentioned the same thing.

So my oncologist gave me the Tamoxifen (in 2004).

After I finished chemo for my recurrence 4 years later, same question was asked again. And again my oncologist gave it to me after I had asked for it.

I consulted my 2nd Sister-in-law's oncologist overseas about the matter in 2009, and he told me the following:

Since your breast cancer is ER (+), although the percentage of ER is 5-10%. Hormonal therapy with tamoxifen or AI (arimidex) is the treatment of choice.
The disadvantage of tamoxifen: Uterine myoma, uterine carcinoma...etc. but less osteroporosis.
The disadvantage of arimidex (AI analogue): severe osteroporosis..
Conventionally, chemotherapy will destroy the ovarian functions, oophorectomy, therefore, is not necessroy.
But if you still have menstration indicating the normal ovary function, oophorectomy and hysterectomy (to avoid uterine tumors) followed by tamoxifen treatment are treatments of choice. [I think he meant to use the word 'following' (or 'after') instead of 'followed by'] [12-25-2010: Now my oncologist started me on Tamoxifen again - perhaps my Sister-in-law's oncologist was talking about oophorectomy and hysterectomy 'followed' by Tamoxifen.]

I asked for hysterectomy/oophorectomy after my genetic test came back positive for a BRCA1-'Variant of Unknown Significance'. After the surgery in January, I quit taking Tamoxifen and thought I would start AI.
But my oncologist said 'No'. So I just let it go.

However, my oncologist sent me a note in August a couple of days after my last appointment with him and told me that he "just wanted to make sure that you are taking your Tamoxifen."
So I am back on Tamoxifen again. I later found a couple of articles citing the result of some studies that the benefit of Tamoxifen continues even after 5 years and also for ER- patients.

[Joan M]

Michka,

Adding a course of chemo to your regimen might be a good thing. As you know, I had local treatments for both my lung met and brain met and have never been on chemo, only Herceptin, since my disease advanced in January 2007.

However, I now worry about that. If I had to do it over I would have had a course of chemo after the original lung wedge resection.

I mentioned my concerns to my onc, but she absolutely refuses to consider giving me any treatment unless another lesion shows up again.

I feel that I should be doing something more than Herceptin. I can probably get treatment somewhere else, but will wait a few months to decide what to do. I've gotten mixed opinions, with most people telling me not to take anything.

As to the CTC test, they don't believe in it where I go for treatment. I also asked about that test at my appointment last week.

Joan

[caya]

Michka, comment ca va? How are you? any updates?

all the best
caya

[michka]

Hi Caya! Thank you so much for thinking of me. To tell the truth, I am not too well but much better than a week ago. I had horrible pain below my right ribs after I laughed and was back in the hospital in ER. It was the first time I laughed since the discovery of my met. They gave me morphine and did a scanner and an echo. That was almost 4 weeks after surgery.
They said they saw nothing but wanted me to stay overnight. The surgeon looked very worried but kept saying he did everything perfectly. I had to tell him to stop protecting himself, it was not the point. I just wanted to stop suffering and understand what was going on. The next day I was better although still in pain. Seeing them so worried and not talking I said to myself I had to get out of there and see someone else. They didn't like the idea but had nothing to suggest. I left the hospital and contacted a very good friend who is a "hepato gastro" doctor. How do you say that in english? I figure you understand. With the scan and the echo he told me it was very clear: a stitch or clamp must have broken when I laughed and you could see traces of the bleeding on the scan. he said that's why they were worried not knowing if it would stay stable and heal or if it would worsen. He reassured me telling me I should not wait in a hospital bed but not move at home. He told me what to watch carefully and if some parameters changed to go to the hospital where he works. He said it should get better very slowly but it is very painful. It did get much better but now I am afraid to move, sneeze or laugh. I have had coagulation problems during my 2 breast reconstruction surgeries and I always knew this means cancer although nothing ever came out as being abnormal in all the very intensive work they did on my blood.

I had my first infusion of herceptin 10 days before this episode and was so sick. I did not have that with herceptin before but maybe it is because my liver was not healed. I had very bad nausea, chills, headache and pain but it only lasted 48 hours. I started Tykerb 2 weeks ago. 2 pills for a week and now 3 pills until I see my onc again at the end of next week. It is a little difficult on my intestine so I am on the Brat diet. This part is OK. I know how to handle. What worries me is that on the scan they did in the hospital it also shows they see 2 other pale spots on the liver. That is what worries me the most. They did a scan without contrast. I have a MRI of the liver scheduled the day before I see my onc. I am scared stiff. With my onc we should also discuss chemo or not chemo and what. I would like to go with Navelbine. But if I have no other met, should I go for Chemo or keep it as a future weapon?

I didn't need this complication but I am better. Just hoping I have no other met.I am trying to take hold of my mind and be stronger. Thinking of Steph, Elaine, Andy, Kim, Tricia, Chrisy, Stephanie, Jackie, Lori, Trish, Sheila, Pam, Chelee, K1 and KDR and so many other courageous ladies who don't complain and fight.
Love to all. Michka

[Jackie07]

Oh Michka, I'm so sorry you have had the complication. Nobody should be punished for 'laughing' - that is just not fair.

Hepato Gastro sounds like liver and stomach - the closest one in English I can think of is a gastroenterologist who takes care of the digestive tract problems.

Love to you, too.

[Sheila]

Michka
Stay strong, just wanting you to know I am thinking of you and keeping you in my prayers....I am so sorry for the complications,,,hoping they resolve and you can begin treatment soon....I am hoping the navelbine will do its thing...many have had success with Navelbine and liver mets.
Sending a big hug!

[Mary L]

Michka, I too am so sorry you had to have this added complication. You are very brave. I am praying for you and that you get a good report on the MRI. Best wishes!! Mary L

[caya]

Michka, I'm sorry you had this complication... try not to rire (laugh).
Jackie is right, I think the dr. is a gastroenterologist - gastro for short.
I hope one of our liver braniacs will chime in with some advice.

all the best
meilleur a toi,
caya

[StephN]

Dear Michka -
I am wondering why they did the CT without contrast??
And you have an MRI of liver scheduled, but not a PET scan?

Those spots could be scar or some other non-cancer thing showing up.

Sorry about the bleed. You'll have to chuckle more quietly and softly! But - KEEP your sense of humor. I wonder if the MRI will show that the area of the bleeding is being cleared by your body's natural processes. Hope that is what they want to look at - more so than the spots.

I know you will be much better very soon.

[Lori R]

Michka,
Amazing connection thing....I was driving home from work this evening and was thinking about you. Although I rarely log on in the evening, I decided to and the first post is from Steph N on your thread.

It is so good to hear from you and pleased you had reason to laugh. But then....sorry to hear it caused problems.

I will be anxious to hear about decide upon. I wish I had some data for you regarding the results of my recent round of Navelbine, but I won't have a scan until mid to late February.

Keep on laughing!!! It is the best medicine.

So glad to see your update....Lori