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Old 06-03-2011, 11:30 PM   #1
michka
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Lost

Hi,
After getting mad I obtained my pathology result for the last liver resection. It is HER3+ ER+ 70% and PR 0. In december after a celio it was 20% ER+ and 0% PR.
4,5 years ago it was 90% ER+ and 20% PR+. What does this mean? Why does it keep changing? I stopped taking anti estrogens after the 20% result.
I did not see my onc yet. I will have a Pet/scan within 10 days.
The MRI report says there is a tumor in a place that was there before and I don't know why they didn't take it out. It is the same one. All the other ones are gone.
There is also a small pouch of liquid about 3cm. That really frightens me.
I figure the first thing I have to do is get back on Faslodex. I have only had 1,5 round of Navelbine but it does not seem to be working. I remember that chemo does not work to good for ER+. Am I right or am I getting everything mixed up?
First I want this met zapped with RFA. Herceptin, chemo or whatever never worked for me.
Than I have to fight to get in a TDM1 trial. There are some in France but my onc has to fight for me. I hope he will.
I am so down after suffering so much. At least I was hoping I was not doing it for nothing. I need your fighting spirit. Love to all. Michka
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Old 06-04-2011, 12:21 AM   #2
pibikay
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Re: Lost

Am praying things will work out well
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Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 06-04-2011, 05:12 AM   #3
Pam P
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Re: Lost

Michka - Hang in there- you do have a a great fighting spirit. I hope the next scan results and your doc can give you all the answers to your questions about the tumor. Is you RFA scheduled yet? Wish I knew more about the her2, er, pr % 's but they confuse me. I just know I'l read that the cancer cells can/do change characteristics over time. You haven't been on navelbine very long - why do you think it's now working? Try to meditate and get go a calm place. I know you'll come back out fighting. I'm standing with you and cheering for you. Pam
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7/01 AC, taxol; radiation
2/02 tamoxifen
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Old 06-04-2011, 05:47 AM   #4
michka
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Red face Re: Lost

Thanks Pam. I just don't understand how the ERs go up and down within 3 months. It is difficult to build a strategy. Then there is this tumor. I thought they took it out. What is this mess? As for Navelbine, the markers keep going up slowly every week. I have decided in my head to do RFA again but haven't seen my onc yet. As for the liquid, it sounds bad to me even if there is not much But I see everything in black.
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Old 06-04-2011, 06:39 AM   #5
Lori R
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Re: Lost

Dear Michka,
You are such a determined fighter, you are certainly in the warrior hall of fame.

I don't have many answers but it appears that you are in the "waiting for answers" zone which is a very uncertain, anxiety filled place to be.

Was the slide with the liver met a recent one? If it is, the only thing that I can think of is that the met was in a location where RFA could not be performed. But....cryosurgery can often be used if that is the case.

Status of Navelbine....please be patient with the chemo to confirm whether it is or isn't working.

You will be OK as you are a fighter and you are on the right track about demanding support of ANY option from your Onc. You have been through so much and you deserve a treatment that will knock back the beast once and for all.

So smart of you to come to the site...Keep on demanding the best for yourself!!!!

XXOO Lori
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 06-04-2011, 06:58 AM   #6
krisvell
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Re: Lost

Hi Michka;
After my initial surgery, my ER status changed significantly from being highly positive to just a little positive. The oncologist told me that it was borderline to even give me Femara. If I had a bad reaction to it, she was going to take me off. So I guess it does change.
Please hang in there; you are doing really well.
I really like Pam's idea. I've been doing a yoga/meditation dvd during the week and it really helps (along with Adivan).
Sending hugs and prayers your way. Hoping you will start to see white and the glass full to the top because that's the kind of person you are. It's just a little bump for you to get over.
Love,
Kris....
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
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01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 06-04-2011, 07:09 AM   #7
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Re: Lost

About 1/3 of people who get mets have a change in the pathology of the tumors. This is because the anti hormonals do such a good job of getting rid of the cell lines that are hormone positive. For example, your original tumor was 90% ER+. This means that 10% of your original tumor was not ER+ but was ER negative. It is these cells that "lived" or were unaffected by treatment and it was those that grew and remained. All of our tumors are mixed in some respect. Sometimes women who are not Her2+ to begin with but only hormone positive become Her2+ with mets because in the original tumor, there were a couple of cells that were Her2+ and those are what grew back. So, it is not surprising that the pathology of these tumors is different - I just wanted you to know that this is not abnormal or strange.

You are a very brave person Michka. It is normal to be afraid and it is brave to say so and seek support. We are all here for you with our loving arms to give you the support you need. You are our sister.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 06-04-2011, 07:09 AM   #8
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Re: Lost

Michka,

My oncologist put me back on Tamoxifen last summer even though mine is only 5% and I've been 'chemopausal' since late 2003. Do a 'Search' of Tamoxifen on this board to see the abstract I had located on the rationale. [continuing Tamoxifen after 5 years still shows benefits]

Perhaps you can try Tamoxifen?
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Old 06-04-2011, 09:01 AM   #9
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Re: Lost

Michka,

Just want to explain for everyone's sake that the word "tumor" is always frightening because we automatically think it means cancer. But such things as fibroadenomas in the breasts are also called tumors, even though they are benign (not cancerous), and they are usually left in the breast and might be reported over and over as being "tumors" that had been there before, so that if the next doctor is looking at the film and sees something there, everyone will understand that it was seen before and is still there.

Thinking of you,

AlaskaAngel
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
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No trastuzumab, no taxane, no AI
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Old 06-04-2011, 10:12 AM   #10
ElaineM
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Wink Re: Lost

Hi Michka,
The other ladies gave you some excellent advice, but I thought I would add a few things.
Pam is right. You need a little quiet time. I know it is hard to just let go for a day or two when you think cancer is growing, but it is so important. When I get not so good news or I have so many things to think about I put it all aside for a day or two and do something else or meditate and pray. Only when I feel refreshed do I attempt to solve medical problems or get my questions answered.
Her2, ER, and PR status can change over time. Different parts of the body can also have a different Her2, ER and PR status at the same time. Currently my left side has a lower Her2 and ER status than my right side even after re doing the tests three times in 6 weeks.
Not only that Alaska Angel is right. We can have various kinds of tumors, cysts, sacs, hematomas, seromas, benign tumors and thickenings all over the place. They are not always cancer. Some of them can be benign. Some of them can be cancer.
Personally I have come to the conclusion that occassionally my own body does silly things that nobody can explain and nobody has control over (not even me as much as I would like to be in control).
I guess you can ask for a biopsy or other test to try to determine if the spot in your liver is a real cancer or some other not so dangeous thing. I don't know if Pet scans are available where you are, but they are pretty good in determining if something is actually cancer rather than some other kind of tumor as long as the area of concern is more than 5mm and metabolically active. It is harder to tell on a cat scan if something is cancer or benign.
It could also be that your tissue samples or blood was sent to different labs each time you had a procedure or blood test. Different labs have different criteria to determine what is normal and what is not normal. That makes it a bit difficult to determine progress over time. Whenever possible I try to have things sent to the same lab, but that is not always possible.
Hang in there. Take good care of yourself. Try to take a little rest or some fun over the weekend, so you will be ready to jump in and fight next week. Let us know how you are doing after that.
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Old 06-04-2011, 10:22 PM   #11
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Re: Lost

Hi Michka
I am no expert but if it is HER3+ wouldn't Lapatanib (Tykerb) be a good idea? The Herceptin may have been effective in closing down the HER2+ driven pathways so I don't think it was necessarily ineffective just not sufficient. I hope someone with more expertise will correct me if I am wrong.
Hope you are feeling better after the resection.
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
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7/2008
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12/2008
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2/2010
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8/2010
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12/2010
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4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 06-05-2011, 12:32 PM   #12
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Re: Lost

I suspect Michka was saying the her2 pathology was 3, not that her3 was looked at. Although there is research on her3, I don't think testing for that is readily avaliable.
Michka,
The change in ER status may also be from having treatment, especially her2 targeted therapies that some think may switch status along an ER and Her2 crosstalk path.
I haven't seen much to support it but..I've always thought individual biopsies from different sites..even at the same time..might give different results.
Given what you have to look at, (if Navelbine doesn't eventually help) Fulvestrant might be a good choice. Negative progesterone I believe is thought by some to denote less response to antihormonals, but this seems to suggest Faslodex operates differently:
http://clincancerres.aacrjournals.or...3/15/4435.full
And it might actually enhance chemo if you pursue that.
If you have access surgically, you might pursue a sample for chemosensitivity testing.
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Old 06-05-2011, 01:22 PM   #13
belle
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Re: Lost

Dear Michka,

Have you seen this link:

http://clinicaltrials.gov/ct2/show/s...ow_locs=Y#locn

My mom got enrolled in EMILIA trial (randomized: TDM1 vs Xeloda+Tykerb) in Germany about 4 months ago. If you scroll down a bit, there are many centers in France that are still recruiting patients. Just try to contact one of those near to you and the person in charge of the trial should guide you through.

Best wishes,
belle
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Old 06-05-2011, 05:04 PM   #14
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Re: Lost

Michka, no advice sadly but sending good wishes and (((hugs))))) to you, you can do this!
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A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
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Currently taking Arimidex..
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Old 06-06-2011, 12:31 PM   #15
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Re: Lost

Michka, I want to add my love and prayers also. You have received so many good responses! I hope they help you--they are an example of how wonderful and helpful this site is. I had really good luck with navelbine 6 years ago.A year ago when I needed chemo again, navelbine was the first choice, but strangely, I had a really weird reaction to it and had to stop right away. You probably remember from my recent posts that we also tried Gemzar, which caused a severe rash, then tykerb and Xeloda, which added hives to the rash! Now I am trying halavan. The first two rounds went very well, then I had the first of the third round, but had to also start 1000 mgs of septra a day due to a UTI. That was 3 weeks ago. The onc stopped everything because I was so weak and sick. I will have my home nurse draw labs today and will hopefully be able to start the halavan again tomorrow.
As you know, I am 81 and have been fighting BC for nearly 26 years, so I have gone through a lot of the ups and downs. This website has been such a blessing to me. It has given me wonderful insights and information, along with the love and prayers of so many wonderful warriors. I hope all the remarkable posts you have received here have lifted your spirits as well as given you new hope and also great information. I know you will take a deep breath, get some rest, and make use of all the good information you have received.Thank you for all the good responses you have sent to my posts in the past. I am sending you love and prayers and hugs! TriciaK
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Old 06-06-2011, 06:22 PM   #16
Laurel
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Re: Lost

Michka,

It can be simply that another part of your liver mets was biopsied. Within a tumor the levels of ER,PR, even Her2, can vary greatly. That is frustrating to anyone, researchers included. I think I'd stay on the anti-hormonals.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
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I think I just might hang around awhile....

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Old 06-06-2011, 11:50 PM   #17
michka
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Re: Lost

Thank you so much for your answers. Sometimes I feel so alone and you bring me courage and hope by your posts. I can't write all the side effects and problems I had since surgery and then after starting Navelbine or you would take me for a real nut.Tricia, thank you for reporting about Navelbine. I had horrible side effects nobody has. But your post made me think I was not just imagining things.
But this is the latest story: in march they saw 3 mets and 2 very small ones by this powerful 3 Tesla MRI. And you know what they did? They took out 2 mets by resection and the 2 very small ones by RFA and nodes. They FORGOT to take out a big one that was 12mm. On the new MRI I had on friday it is there, in the same place, and it is the same size. I was operated in the biggest cancer center in France Institut Gustave Roussy. My onc kept reading the operation report and wanted to kill the surgeon although he tried to be positive and not to show it. He said "well the good news is that it did not grow and nothing new appeared". He suggested Cyberknife or RFA. He prefers Cyberknife. I am reluctant. Why not celio or RFA?
The other thing it showed is that the treatment is not really working although it stabilized the situation. So I asked to throw in Tykerb at a dose of 3 and Faslodex on top of Herceptin and Navelbine. The good thing in France is that it is the doctor who decides. He agrees until we get this STUPID MET blasted and then if there is nothing else just stay with Herceptin Tykerb and Faslodex.
I am going for a PET/SCAN next Wednesday because they always want the full picture before operating. I know the liver is going to light up all over and be difficult to read but it will show the lungs and bones. Please think of me and hope I "only" have this liver met.
I must admit I can't see myself again on an operation table. But I know I will because so many women here are courageous and give me strength. I hope my body will follow.
And if this plan doesn't work I will go anywhere in the world for a TDM1 trial. There are some in Europe and in France.
Tricia, I hope you can go back to Halaven soon.
Love to all.
Michka
PS: Rich,yes, I wrote HER3+ that's how they wrote it on my pathology report. It means HER2+++
Do you know if I can have Faslodex with chemo? There seems to be discussions between oncs about that.
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Old 06-07-2011, 05:06 AM   #18
Sheila
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Re: Lost

Michka
I am so sorry you are enduring even more...it has been a rough time and i can read the fear in your post. Are they sure the Navelbine is not working, because tumor markers may rise initially as they see dead cells sloughing off. As far as the pouch of fluid, I would bet it is a hematoma, a little sac filled with bloody fluid that can frequently occur after surgery...it usually just takes time to absorb. If they are sure that the Navelbine is not working, I would urge you to get into a TDM-1 trial if you can....seems it works so well on those with liver involvement. As always Michka, stay strong and determined, you are in my prayers that you will get answers and this will soon be behind you as you continue to regain your strength. You are strong and determined, and we are all here for you. Sending much love to you.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-07-2011, 05:54 AM   #19
Rich66
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Re: Lost

Info on Fulvestrant that includes some combining with chemo Info:
http://her2support.org/vbulletin/sho...ht=Fulvestrant

chemoendocrine approach in general:
http://her2support.org/vbulletin/showthread.php?t=43403
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