32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???

[SunDiego]

Here is the full background....

We recently discovered (mid June 2010) a lump in my 32 year old wife's right breast, and immediately followed up with ultrasound > core needle biopsy > MRI > mammogram. Long story short this all led to initial pathology of multifocal DCIS with suspicious areas of invasion, as well as multi-focal areas of calcification. Fast forward to July 13th, when my wife had her lumpectomy done (3 weeks after discovery) by a the most highly regarded surgeon in the area the most highly regarded multi-disciplinary center (no names here). The pathology just came back yesterday (7/19/10) and the results were NOT what we were hoping for. She goes in for med. onc and post-op with doctor tomorrow... and have lined up second opinions as well in a few weeks with another med onc and surgeon - just in case.
I'll list all the key words and phrases here in the hopes that others with similar experiences can please chime in with words of support or suggestions or experiences.

PATHOLOGY

* Sentinel Node 0/13
* ER+ 10% in invasive carcinoma & ER+ 80% in DCIS
* PR- (report said "mostly negative, only 5% positive in invasive, 10% in DCIS)
* HER/2+++ (3+ on ASCO/Dako in both invasive and DCIS)
* mBR Grade 3 (score: 8) "multifocal invasive ductal carcinoma arising from extensive high grade DCIS with comedo necrosis and calcifications"
* Invasive Tumor Size: 0.7cm
* Lymphatic Vascular Invasion: Suspicious
* DCIS polarization: Poorly Developed (Comedo Necrosis visible)
* Stage 1a is what we've heard thus far (NOW STAGE IV - see bottom)

Margins (3 areas were removed)
1. Lumpectomy: True margin focally positive for DCIS
2. Right Lateral Margin Around Cancer: High Grade DCIS, margins clear
3. right true posterior margin excision: margin focally positive for DCIS
Additionally this was in pathology report
Resection Margin for Invasive Tumor: Clear 0.15cm

Additionally we are not planning on having more children (current age of kids is 7mo & 3yr), also she has Endometriosis, is BRCA1/2 negative, and mitro-valve prolapse. Otherwise in good health 5'6", 110lbs, and has no problem doing a bilateral mastectomy with reconstruction, but is scared to death of chemo, herpectin and the related side effects.

We are concerned about the following and would love ANY input anyone has:
- the seemingly discouraging combination of ER+/PR-/HER2+++. Makes it seem like no matter what she needs to have herceptin and chemo of some type with bilateral mastectomy
- what seems to be significantly increased chance of recurrence with HER2+++
- the terrible side effects of Herceptin, Chemo, etc for a 32 year old.
- the high grade 3 invasive part, the HER2+++ and the focally positive margins all share the crud out of us



(Update August 2010: additional staging found a 3cm liver lesion, which was biopsied and confirmed to be breast metastasis)
CTC Score: 0
Tumor Markers 15-3/27-29: 678/1003
THC started August 9

[Jean]

Your wife has a similar dx to mine.
er+ pr- (which is a rare subtype)
I also had a small tumor 6MM

Your doctors are impressive...but...this is what I would strongly recommend that you contact Dr. Slamon in UCLA who is the dr who is the Father of Herceptin. He has done all the trials and he did the studies of TCH verses A/C and Herceptin. The TCH arm had 0 issues with any heart issues. While you wife has a medical history with her heart I would seek Dr. Slamon's advise on treatment for her in regards to herceptin.

The herceptin was found to have heart issues when given with A/C chemo.

All women fear chemo of any kind that is a normal reaction as no one wants to be dx. with any type of cancer. But please know that the stats have changed drastically with Her2 breast cancer.

Some of the few percentage of women who had heart reaction to the herceptin - once the treatment was stopped the medical issue reversed itself.

Your wife will require additional monitoring but I do not believe that she would NOT be able to have herceptin due to the mitral valve prolapse. Most people live normal lives with this condition - (of course do not know how severe your wife's prolapse is) does she take medicaiton for it? Has the dr. thought of surgery due to her ejection fraction? Herceptin can lower the muga score and that is when the treatment would be halted.

I know it is easier said then done, but try to relax as you will need to have calm clear heads to make the best medical choices. We have made great strides in this disease especailly when caught early like your wife.

Below I have linked information on trial studies of Dr. Slamon and TCH and herceptin studies...knowledge is power with this disease. When I was dx. (05) early stage women could not be given herceptin as it was not FDA approved. I went to see Dr. Slamon who agreed with me that my top dr. in the East had missed the boat. 1.5 yr later herceptin was approved for all early stage Her2 women. Dr. Slamon is cutting edge. I was lucky that I continued to get opinions and do my homework and fight back hard. You have found the very best site for information and support.

I am so very sorry that you and your wife need our support and help - but all here will do their best to always help you!

http://www.mylifetime.com/movies/dr.-dennis-slamon-search-cure-breast-cancer

http://en.wikipedia.org/wiki/Dennis_Slamon

http://annonc.oxfordjournals.org/content/early/2010/03/29/annonc.mdq096.full

http://www.herceptin.com/hcp/adjuvant-treatment/studies-efficacy/bcirg-006.jsp

http://jco.ascopubs.org/cgi/content/full/26/8/1198

http://www.drugs.com/newdrugs/first-taxane-based-non-anthracycline-containing-chemotherapy-combination-herceptin-tch-her2-993.html

contact for Dr. Slamon
310 829-5471

Best Wishes,
Jean

[jellybean]

I am sorry to hear your wife's story. First, Herceptin for me has virtually no side effects, and I have been on it for 3 and a half years. (I have metastatic disease.) I don't know enough about the heart to know what a mitral valve prolapse is. I think that the way that Herceptin causes heart failure is that it decreases the left ejection fraction, the amount of blood pumped by the left side of the heart. Typically, women are given a echocardiogram or Muga scan prior to Herceptin treatment and periodically during Herceptin treatment to make sure their heart is pumping OK. If it is not, one might be taken off of Herceptin to give the heart time to recover. Typically, any heart problems caused by Herceptin are reversible.

Chemo, particularly the TCH regimen often given for Her2 positive breast cancer, is very doable for many. I ran, biked, and worked part time while on chemo.

Actually, the Her2 positive ER positive pathology is a good one, since your wife will have the benefit (hopefully) of both Herceptin and anti-hormonal therapy. The good news is that she is node negative and the tumor is extremely small. (In fact, until very recently chemo and Herceptin was not recommended for women with tumors less than 1 cm.) If Herceptin is not a possibility, perhaps she could have Tykerb, another targeted treatment for Her2 positive disease. The positive margins would be resolved by a mastectomy, so that won't have a negative effect on her.

[AlaskaAngel]

SunDiego,

If you haven't already done so, try doing a search in the various forums here by keywords to see if there have been any other threads or posts in the past from someone with a similar question or comment.

It might be reasonable also to get the perspective on this from Dr. Susan Love. Your wife's situation is complicated.

For quite a period of time Dr. Love stood pretty much alone in recognizing the hazards of estrogen while most doctors were adamantly continuing to prescribe it. She may have some suggestions for consideration that could be helpful in regard to your wife's hormonal status and various therapies available.

AlaskaAngel

[Sheila]

A quick note that I have MVP and I have been on Herceptin for 7 1/2 years straight....I am on Coreg now to keep the heart strong after some issues with Avastin, but no issues with the Herceptin and Mitral Valve Prolapse!

[Jaimieh]

Sundiego~ I was 32 when I was diagnosed with IDC and I have MVP. I was monitored before cancer and I was monitored thru out TCH and my heart is doing fine so far. I choose TCH since I have the MVP. I wish your wife all of the best.

[SunDiego]

A few updates... my wife found a great medical oncologist she is very comfortable with that came highly recommended. Along with a second (or was that a third opinion?) from City of Hope (sister-in-law works for COH in fundraising department), we're confident that the recommendations are all lining up and my wife is on the right track. That track is...

- full restaging: PET/CT, bone scan, 2D echo, blood panels, brain MRI, re-reading of lumpectomy slides
- install Port Cath (into arm, not chest)
- meet with "cranial prosthesis" makers before hair falls out
- TCHx6 starting August 9 (will join the "Chemo August 2010" thread), followed by additional Herceptin every 3rd week to finish out the full year
- Bi-monthly PET scan to monitor liver (liver blood panel came back yesterday 'normal', so hopefully that means it is more likely to be the "adenoma", but the regular monitoring in a few months after chemo starts will further confirm this (pray it shrinks or doesn't grow at least)
- after the year look at next steps, to possibly include Tamoxifen (w or w/o Lupron) and who knows? (12 months scientists... work hard and fast!)
thank you everyone for all the support, it has helped immensely. Wife enjoys reading the responses, so keep it coming! Thank you!

[jellybean]

Sounds like a great plan. You might consider a liver biopsy before chemo begins. That way you would have an idea of what is in the liver. Otherwise, if it goes away with chemo you might never know.

I had what appeared to be mets in the liver when I was first diagnosed. We did not biopsy them because I had widespread metastases so the biopsy would not change the treatment and we needed to start on chemo ASAP. Well, I had a complete response to the chemo, and to this day my oncologist wonders what the results of a liver biopsy would have been. For her (and me), it is just a matter of intellectual curiosity. For your wife, however, it could have treatment ramifications. For example, if in the unlikely event it is a metastasis, she probably should remain on the Herceptin after the completion of her chemo.

I am not a doctor or a medical professional. Just my two cents.

[SunDiego]

Liver mass is in an area that both surgeons separately said could not be biopsied.... if/when it had to be removed it would be full open surgery and they would need to take 40% of liver (only if it has to be taken out.. which we won't know for 2-6 months). They are not overly concerned as of now...

[SunDiego]

Unfortunately the PET scan of the liver came back highly metabolic (SUV = 10.8), and the tumor markers were highly elevated (both CA 15-3 and CA 27-29). One was 678 and the other 1003. Not sure how to correlate the results of the CTC (circulating tumor cell) test, but that came back at 0. Seems odd to have mets to liver with CTC 0, no??

Liver biopsy was revisited and now they feel comfortable getting access to the tumor site. It will happen on Monday.

Chemo (TCH) started Aug 9. Will follow markers and re-do PET/CT in a month to see if additional chemo is the call, or if stopping chemo to do a liver resection is recommended.

Either way we're freaked and looking to hear some stories from others with liver met(s). My wife has a single liver met (to be confirmed by biopsy on Monday), that was pretty much found at time of initial breast tumor.

Treatments? Procedures? Surgeries? Regimens? Anything....

[rondo]

Look into radiofrequency ablation for solitary liver mets-it is relatively non-invasive and quite effective

[BonnieR]

I have MVP also and had an uneventful year of receiving Herceptin. They did echocardiograms prior and throughout treatment.
We can all relate to the fear and trepidation you are experiencing right now. Beleive it or not, things start falling into place and a plan emerges.
You are becoming a great advocate. Crash course. I found the ACS a good resource too. They will answer questions over the phone and help research things for you.
Most of all, keep the faith.

[chrisy]

Hi,
Sorry I was intending to respond you your post yesterday but as you know we are all in shock right now. I'm glad I found your post again! It's draining to have bad news just keep unfolding...but try to think of it as just information that will help you make your moves. The uncertainty of not knowing is worse.

It sounds like you have found excellent medical support and that you feel confident in their opinions and care. That is really important. The biopsy is not a fun procedure but is necessary so that you know what you are dealing with, especially with so much other information that you feel is inconsistent (CTC).

The good news is, the blood test indicates your wife's liver is functioning just fine. It is a remarkable organ and the only one that has the ability to regenerate itself.

I agree that IF it turns out to be a liver met, you should investigate local treatment options such as RFA which is minimally invasive and can have great results. Whether that is an option also depends on where it is located but with a single lesion it's often an option.

I know this must all seem terribly overwhelming. That's only because it is overwhelming. But don't forget what a powerful force of nature your wife is - especially with you as the wind beneath her wings. Amazing how I know this even though I have never met her, isn't it?

I wanted to respond to you as a person who was diagnosed with extensive liver mets. My "canceer resume" is below. But you should know that I only trot that out for the cancer community.

In the real world, I live my life. I work full time at a job I love, I've been able to be there for really important times in the lives of my family, and traveled all over the world. In between that, I deal with cancer. Last year I celebrated a birthday that I absolutely KNEW I would not see...so much for knowing the future, eh?

I just want you to know that there is much reason to be hopeful. There are many treatment options and more on the way; science is moving very fast. Just take it one step at a time.

Do not lose heart.

Much love,
Chris

[Jackie07]

I also have Mitral Valve prolapse and went through 6 rounds of FEC (Fluouracil, Epirubisin, Cytoxan) in 2003 after a right lumpectomy for a 1.2 tumor.

Your wife's doctor probably will be more concerned about her liver met. Because of the heart function issue and possible recurrence (my full-year Herceptin was cut short at 22 weeks during the TCH + H treatment for the recurrence found in 2007)

Several of our members have the experience of treating liver mets. If you type 'Liver mets' in the 'Search' window, you can pull all the threads related to the topic. The Seattle vaccine trial seems to be very effective. And the very exciting TDM-1 trial has been said very likely to get approved by next January.

Positive thinking and regular exercise increase the release of 'Endorphin' from our brain and will improve our immune ability to fight diseases.

Please let your wife know that she's got a league of women (and a few men) fighting along with her. I'm sending good vibes...

[SunDiego]

Liver biopsy came back positive for metastatic breast. Chemo treatment doesn't change. We will monitor this very closely and med onc feels confident it will repond to TCH. We're feeling optimistic with a single <3cm liver lesion and TCH already started.

Thank you everyone for the comments and support. (BTW, can't change the thread title, but the mitral valve prolapse isn't an issue anymore..)

[chrisy]

TCH is a great combo.

[SunDiego]

Question all... my wife just started TCH two weeks ago (1 of 6 completed). Been reading a lot about Tykerb as well and think it could be a good addition to the treatment. Is that possible?
Can one take TCH and add Tykerb? If no, when is Tykerb introduced?
We're also wanting to get her on TDM-1 (but don't want to have to qualify with progression).
In absense of progression, can one add Tykerb to Taxotere, Carboplatin and Herceptin?
Thanks,

[Jackie07]

Currently Tykerb is not used 'along' with TCH. I think there's a current trial adding Tykerb to it. But Tykerb is usually given to the patients who've already had TCH:

http://www.tykerb.com/

Looks like it can do more damage to the heart.

[SunDiego]

Wife's second TCH was Monday... Tumor Marker CA 15-3 was redone and dropped from 1003 to ~550 (still seems awefully high, but Onc was thrilled). Full healthy thick head of hair still (those on TCH, what is average time before hair loss). Otherwise no real SEs. Started on Lupron & Zometa Monday as well.

[chrisy]

Well, I wouldn't count on the head of hair for too much longer I'm afraid. For me it started vacation around 13 days...and in case nobody told you this, it "hurts". Not badly, but noticably. Adding injury to insult as it were.

BUT in the grand scheme of things...it's much better to have such an immediate response with the TM's! That's great news, take it as a good sign!

[Trish]

According to one of my oncologists herceptin has really changed the HER 2 prognosis radically, and it is actually likely to have better outcomes than non HER 2+ types. Not sure if I believe him but....Tykerb is also a HER2 targetted therapy that has been good for me. I wish I could have had Herceptin when my cancer first appeared, so I'm very glad it is an option for her. All the best to you, your wife and your little ones. Trish

[SunDiego]

Just wanted to give a quick update. My wife did a follow up PET/CT yesterday. First TCH was done on Aug 9, a second on Aug 30, and third will be on Monday. The numbers related to the isolated liver mass....
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2

Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0
We're thrilled by this improvement. I'm assuming this is "normal" to see such shinkage after chemo does its job (dropping by just over 50%). Another CA 15-3 was drawn yesterday, so results will be in soon.. (started at 1003, dropped to 527 as of Aug 30)
On another note, hair finally gave out, 35 days after first chemo, so fully shaved yesterday and amazing real human hair wig was already ready and put on. It looks better than her old real hair! (for those in the Southern California area: we highly recommend Piny of Beverly Hills. Google him).
Thanks all for the continued support, kind words of encouragement, and resources.

[Lien]

Wonderful news! thanks for sharing.

Hugs

Jacqueline

[flynny]

Fantastic news! It can definitely help having a beautiful wig too!

[SunDiego]

Wife just completed 4th of 6 TCH treatment. Ran tumor marker tests on the day of treatment and it dropped nearly 70% in the last month.

CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11 (effects of first 3 regimens only, 3 to go)


Keep the positive vibes flowing!

[Lien]

Wonderful news! I'm so happy for you.

Love

Jacqueline

[chrisy]

Great news! See, that stuff really works.

Thanks for the frequent updates - we're all wanting to follow this with you.

[SunDiego]

Just a quick update...
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/2
It's amazing to see this tumor marker go from over 1000 to under 50 after 4 cycles of TCH! Thank you all for the continued support. After the final cycle later this month (11/22), we will be weighing the next steps. Currently it's looking like some form of liver resection is being considered, then deal with a single mx. Discussion of even continuing some Xeloda before a surgery has been brought up as well.
Anyone with experience here, please let us know your thoughts.

[DeenaH]

Wondeful news!! I wish I had had my tumor markers drawn that often. Mine have remained around 36 (tested every 3 months). I'm so glad your wife's have dropped to dramatically.

[SunDiego]

Just a quick update on my wife's tumor marker improvements (CA 15-3)

1003 as of 8/3/2010 (first reading pre-first chemo)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/29
25.3 as of 11/22 (considered "NORMAL"!! Amazing to be down from 1000+. This only takes first 5 of 6 cycles into effect).
December 13 will be next full restaging.. hopefully that liver met will be gone. Then meeting with liver surgeons to discuss options...

[BonnieR]

Looks like you had alot to be thankful for this Thanksgiving. And an early Christmas present too!
Keep the faith.

[bejuce]

That's AWESOME!!! So happy for you and your family!!! As for the Xeloda, is your wife getting radiation after her mastectomy? I had Xeloda after surgery and together with radiation. I got a low dose and it was very tolerable.

Wishing for continued success for your wife!!!

[SunDiego]

No radiation current in the plans. Thinking we may want to avoid Xeloda/Tykerb since it seems the only recruiting TDM-1 trial excludes those who have previously used Xel/Tyk. Would be a shame to disqualify from a trial if possible.

Thanks for the kind words, our family is thrilled so far to see the markers down nearly 98%!

[Mary L]

Great News!!! Happy hoidays to you and family. Mary L

[freyja]

All this great news is awesome! Yes, you can!

[SunDiego]

Hi everyone, sorry for no recent updates, but returned to the office today after being out for the last few days doing updated scans... GREAT NEWS!
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2
Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0
Third PET/CT Dec 10
SUV 2.0
Size 1.3 x 0.4

Fourth PET/CT Feb 7 ***
SUV "Negative"
Size 7mm (residual scar?)
Tumor markers all "Normal", no PET activity... although the term wasn't used, this must mean "NED" (right?)

So after 9 cycles of TCH, it's time to go to 'only' Herceptin, and add the Tamoxifen.
There was a discussion about possibly entering the trial which randomized adding lapatanib (Tykerb) to Herceptin (no Xeloda). I'll check the other forms for discussions on that topic. If anyone reading this has insight, let us know.
Thank you for all the support the last 7 months.

[schoolteacher]

Thanks for the update. Glad to hear your good news.

Amelia

[SunDiego]

It's been a while since I've last posted an update... but not for any other reason than life has returned to a level of normalcy.

My wife's last 13 months of scans, including a PET/CT, bone scan and brain MRI done in the last 30 days were all "normal".

So this single liver metastisis has decided it's had enough and doesn't care rear it's head anymore (knock on a giant Sycamore tree).

Happy new year to all.

[chrisy]

Great to hear this news - I'm looking forward to the "same" update for the next 40 years or so, ok?

[Ellie F]

Great to hear this news. I remember your initial post very well especially how young she was with 2 small children. I hope she remains well forever.
Hugs
Ellie

[oregon]

Hi Jean,

I have a quick question. I am nearing the end of my Herceptin treatments. I was ER+ 95%, Pro-, and HER 2 positive. I was reading a post of yours from I believe July 2010, and where you mentioned the statistics surrounding your diagnosis, you said "HER2 +++ by FISH". What does this mean? I've seen it before and even called by breast surgeon and they didn't know what I was talking about. They again mentioned that I was HER2 positive, but didn't seem to know what "+++ by FISH" is. Can you clarify this for me?

Thank you so much.
Terri

[KsGal]

I just read this whole thread, and please tell your wife what an inspiration she is to me, and how much hope she gives me. I am in a very similar boat, being stage IV pretty much right from the start with a single liver met. Ive only had 3 herceptins and 1 tch so far. I've been a bit down lately (reading statistics on the internet...my doctor keeps saying to put down the damned laptop..lol). It just makes my whole heart happy to read this thread and to see the results. What a blessing, and I am so thrilled for you. Thank you for sharing this with everyone.