Son could use a little advice ...

[Bob B]

Hello all!

I have just registered at your forum and am very impressed with the kindness and support that you show for one another. I am hoping that you can give me a little advice concerning my Mom's situation.

At 78-years-old, she was diagnosed with breast cancer. I am unable to provide you with the exact specifics at this moment, but will do my best to describe her situation as we have been trying to determine if she is an appropriate candidate for herceptin therapy. She is of the 20-25% group that has the type of her2 cells that responds to herceptin.

Surgery was initially delayed for 6 weeks as the doctor who painfully and roughly needle aspirated her caused a very large hematoma that took time to subside enough for surgery. Ultimately, the remains of the hematoma were removed along with the malignant tumor during her surgery. I am unsure as to the definite determination at this moment, but I think the tumor was 1.2 cm in size, maybe Stage 1 or 2 (does that sound about right?). It was localized and did not spread to the lymph nodes.

My Mom decided to go through chemo, and went through 4 chemo treatments, spaced out at 3-week intervals. She started to fade after the 3rd session and after the 4th she ended up hospitalized, as she could not even sit up in bed. She did recover, though, and then completed 30+ radiation treatments, coming through that well.

We are now trying to determine if she is an appropriate candidate for herceptin treatment, and I feel we have not been getting enough information from her oncologist to make the correct decision. Her oncologist appears to be on the fence and when pressured says. "Well, at her age..." before indicating that maybe she should not have the treatment. I am not confident about this, as well as the oncologist referring us to my mother's heart specialist to determine if her heart is strong enough for the treatment, while her heart specialist, in turn, tells us my Mom's heart is strong and refers us back to the oncologist to make the determination. No help here. Mom had an excellent heart specialist who retired just as this was occurring and now sees a different doctor.

The oncologist tells us my Mom's heart is functioning in the 50-55% range but I am not sure if that is based on the muga scan my Mom had before chemo, an echocardiogram, or what.

The oncologist has told us that 4-6% of herceptin patients end up with a form of heart failure; I then read that 1-4% is the current figure; I've also read that the heart failure rate is higher for those who have had a specific type of chemo treatment. I am unsure at the moment exactly what chemo type/s my Mother did have, but will find out.

If you would, I would appreciate a little advice on:

1 - What we need to know to make the determination concerning heart functioning before herceptin is considered. What % of heart functioning is generally required to start treatment, determined by what tests?

2 - What specific chemo causes a less successful herceptin treatment?

3 - What is the FISH determination and how does that relate to all this? Reading on this site is the first I've heard of it. Comments on any other tests we should know about are welcome, also.

4 - We are in the Toms River, NJ, area. Can you recommend a doctor for a 2nd opinion? I felt very rushed in the one instance I took my Mom to the oncologist's office and was not comfortable with that at all.

Mom went through brain tumor surgery (benign, thankfully, but ever so serious) about 4 years ago and she is here today because of the Grace of God. During the past year she also had to be treated for skin cancer that was unrelated to the breast issue.

Sorry to be so verbose. I apologize for my longwindedness.
I thank all of you for whatever info you may express. I am very, very grateful.
Bob B.

[heblaj01]

Bob,

I can't answer most of your questions but I am sure you will get replies from others.
I am only suggesting the possibility of getting the serum test for HER2 status to avoid an other traumatic fine needle biopsy. I am refering to the Bayer test done under licence by such labs as listed below.
The test does not only reflect the status of a primary tumour but in cases of metastatic cancer it will respond to all lesions. So it is not specific to location as a biopsy but it won't miss a remote tumor.
In addition, while this not an approved use of the test, it might help monitor the effectiveness of future treatments if repeated at regular intervals.
Quest Diagnostics
Telephone: 1-800-222-0027
Test number: 15113X

Lab Corp
Telephone: 1-800-676-8033
Test number: 480136

Specialty Labs
Telephone: 1-800-421-7110
Test number S51008

ARUP(drawn in hospital labs and clinics)
Telephone: 1-800-522-2787
Test number: 0098615

[tousled1]

Bob,

Here's the link to a post that Joe made just the other day regarding IHC and FISH testing for HER2 breast cancer.

http://www.her2support.org/vbulletin...highlight=fish

[newgg]

Bob,
First....thanks for hanging in there with your Mom. Attend many meetings with mine about her pace maker. First about the echo..... did the echo every 3 months while I was on herceptin....started out at 55 to 60...did drop one time to 50 to 55.....and herceptin was never d/c'ed. Echo and muga do the same thing but the echo is less invasive and no IV required. Did use the CQ 10 supplement and continued to do a great deal of walking. Consult her docs about that all of this. Much will depend on her over all health. Must admit that hearing a doc wanting to judge treatment because of " her age" ...kind of a rub on the nerves. Is she in good health? Is her attitude to fight, fight, fight?? 2nd onc consult sounds good....you both need to be comfortable and not rushed and have answers to your questions. Write them down as you have done here. You will get more replies I am sure. For your Mom....I say THANKS ! Hugs, Bonnie

[mts]

Hi Bob,

First of all- you must realize how important your help is to your mom. You sound like you are informing yourself as best as possible and soon enough you will be helping your your mom in more ways than you imagined before.
I presume by your description, that your mom's chemo was likely A+C. This ain't "Chemo Lite", and if your mom was able to tolerate it at first, then she may tolerate the Herceptin. The Herceptin is usually taken for a year with infusions every three weeks or weekly (depending on the patient). I was 42 yrs old at Herceptin time and I could not take the heavier every three weeks dose and actually took it every two and sometimes every week. You can switch the dosing around in order to find what works best as long as you get the full tx over a month. Other women on this board have been taking Herceptin for longer than a year (they have more progressive cancer). I can certainly sympathize with the comment from the onc regarding her age and further treatment. The Herceptin could damage her heart, but the MUGA's are taken every 3 months or so. The Echo's are also good and like previously commented -less invasive. This would help monitor her heart. When the MUGA gets below 50, it's time to stop the Herceptin. Many of us hovered in the mid 50's and continued with the Herceptin. Any "damage" done to the heart is mostly reversible. I started at around 85% function and dropped to the 50's. Now its back up and normal!

You probably have realized by now that the onc's really just give you the options of treatments with sprinkles of their medical opinion, allowing you to make the final decision on what treatment to pursue. So, the better informed you are, the better the outcome.

Just recently Tykerb was approved by the FDA and it seems to be better tolerated by patients and actually better than Herceptin. It works similarly, yet it penetrates the blood brain barrier (which Herceptin does not). Many of us Stage I fought our onc's to give us Herceptin... we may have to fight again to get the Tykerb... it does not hurt to ask.

As for the Herceptin; it does work better when combined with a Taxane (this is when the most potential heart damage takes place). However, many of us, including myself, took the Herceptin AFTER the Taxane. The Herceptin is still effective even when you don't have the Taxane, just not as great. I am not sure of the % of better with or without Taxane, but its really close. I will say that the Taxane is the nasty stuff. It really kicked me in the ___ . I would be more worried about a Taxane than the Herceptin.

For myself, at Stage I, cancer treatment took 2 years. I has the lumectomy, re-excission and rad's. Time flies. She's been through the most difficult part already. Herceptin does have other side effects (there is a thread on this board that is the most read -read some of that and you will get an idea of what she would be getting into).

I really hope she can get a 2nd opinion at an established breast cancer center. She needs to go where there are many patients just like her. Peace of mind is most important whilst one is under the cancer spell.

Warmly,

Maria (MTS)

[jessica]

Hey Bob~
Your mom is clearly a SURVIVOR & A FIGHTER.It must bring her much peace & confidence to have you by her side! Having someone to help maneuver the confusion of a new diagnosis is so helpful!
First off, there's a book called "The Breast Book" by Dr.Susan Love. It's an incredibly comprehensive resource & I believe has all the information to help answer your questions - and more. Definitely check it out.
Also, is Memorial Sloan Kettering too far a drive for a you & your mom for a 2nd opinion?Or maybe there's a comprehensive, inter-disciplinary treatment cente closer to you? Maybe a university hospital? I moved from a private practice environment (constantly running around from doc to doc, carrying all my films, reports, arranging for biopsy samples to be transported, bringing each doc up to speed, waiting for them to communicate w/one another...Ugh! What a hassle!) to a University cancer institute-what an incredible difference! All docs under one roof, all the same info in the computer, docs have easy, immediate access to one another and they meet weekly in Tumor Board to review new patient's & each gives they're treatment recommendations.
This will ease your burden immensely!

In the meantime, I'll try & help w/what I know...(or remember!)
1 - Normal EF (Ejection Fraction) is 55-70% ~ keep in mind,"normal" is different for everyone. Hopefully you'll be able to find a cariologist & onc to help make the decision together, with your mom.
2 - Adriamycin (& all anthracycline's) should NEVER be given in combo w/Herceptin. it is possible to use these sequentially but never in combo.
Considering your mom's previous medical history & age, I'm suprised (&disappointed -your poor mom suffered such severe side effects! ) that they had her on a q3week treatment schedule vs. a weekly or q2week "dose-dense" schedule. On a dose dense schedule she may have tolerated more treatment & less severe side effects. (Weekly herceptin might be a better option for your mom than q3week)
3 - FISH is considered a superior test to IHC to determine Her2 positivity.
They should be able to run all future path tests off the samples of your mom's tumor that was removed during surgery -it should be preserved & even prep'd for slides in the path lab.(When you go for 2nd opinion, you'll likely be asked to have this transported for the new doc to look at).Testing the actual tumor sample should give you more accurate info than a serum test.
4 - MSK or any other interdisciplinary treatment center. It's always a great relief when I meet w/my docs & they say "I just looked at your scan report w/the radiologist", or "talked to the surgeon about the biopsy, etc..." Working with the docs to make treatment decisions will help you guys feel more in control again.

Lastly, one of the most important questions I always remember to ask all my docs is, "Is there anything else I should be asking that I've forgotten to ask?" I know it sounds like a strange question, but I've found that when meeting with the doc, sometimes questions will pop in your head or we'll start on one topic, then divert to something else. This always helps prompt the doc to slow down, review what we've talked about and address something that s/he may have forgotten to review.

Hope this info is helpful. You'll find many more pearls of wisdom from the folks here.
Keep us posted on your mom's progress!

Take good care & Keep the Faith~

[RhondaH]

hands down, the person you need to talk to is Tom who unfortunately just lost his mother (not to breast cancer) who was 80 something years old. His/her story sounds VERY similar to yours and I am SURE he would be happy to help you. Also, Triciak is another one. She is 70 something and had actual heart problems when she was dx w/ breast cancer. I have posted both of their information so you can either email or private message them or read their posts. Take care and God bless.

Rhonda

http://her2support.org/vbulletin/member.php?u=235

http://her2support.org/vbulletin/member.php?u=127

Hi Bob,

I will reiterate what Jessica and the others have said:

(1) Definitely request the FISH test for your mother. Even if IHC was HER2 3+++, you should ask that FISH be run as well. Here is an excellent website that describes what FISH is and what the results mean: http://www.nccn.org/patients/fact_sheet.asp.

(2) LVEF between 55 and 70 is considered in the normal range. I believe some doctors will give herceptin if LVEF is at least 50%. Depends, I suppose, on the doctor and the aggressiveness of the cancer. My additional suggestion is that you consult a cardiologist first before making a decision. I would not rely on your oncologist to make this decision for you.

(3) Again, to repeat Jessica's advice. Adriamycin is a chemo treatment that is dangerous to the heart, with or without herceptin. It should never be taken together with herceptin and even taking herceptin after adriamycin can be dangerous. I just visted a cardiologist concerning heart issues as I am on herceptin for six months now. He told me that "usually" the heart recovers when herceptin is finished; he said that this is not "necessarily" true for adriamycin. He is in New York, and I can recommend him or another who works primarily with the elderly. If you send me a private email, I can give you the names of both.

(4) My oncologist, also in New York City, is excellent. In general, I agree with most of his recommendations. What I particularly like about him is his willingness to listen to me. He is not autocratic and everyone at my cancer center loves him. So email if you need his name. I would definitely recommend a second opinion. My oncologist insisted on my first visit that I get a second opinion, although I declined. Good doctors always welcome second opinions.

(5) I had a very difficult time on chemotherapy (taxol and carboplatin) and had to quite ahead of my scheduled four rounds. My reaction to herceptin is nothing like my reaction to chemotherapy. Lots of small complaints: runny nose, cough, swollen feet on occasion, etc., etc. but more than doable.

My last comment is: if your mother's heart is good and she's highly positive for HER2, it's certainly a treatment to be considered. I watched TV the other evening (the woman of 101 years who was attacked and robbed) and thought I hope I live to be her age if I have her mental and physical capabilities. Your mother is still young and she wants to be around, like the rest of us, for a long time. If herceptin will do that, she should consider trying it. New York, by the way, is not so far. One of my oncology nurses is from Tom's River and does the trip almost every day. Come to New York for a second opinion.

I forgot to mention in my earlier post that it is not mandatory that your mother have herceptin for the full year treatment. There have been clinical trials (FinHer) of herceptin for much shorter periods. The FinHer study was for nine weeks. I believe there is consideration now in New Zealand to use it for nine weeks for early breast cancer. In other words, if you are fearful that a year's treatment will adversely affect your mother's heart, she could do a shorter treatment, avoiding one hopes heart damage.

[Lolly]

Bob, you've received much excellent advice, I can only add my personal experience:

I did receive adriamicyn/cytoxin & taxol followed by radiation as my primary treatment. I started Herceptin 6 months after finishing radiation, and my heart function has remained in the "low/normal" range of 50-55%. I was monitered by Echo for several years, then my onc switched to MUGA's; as has been mentioned, Echo is non-invasive, while MUGA involves an injection of radioactive tracer. I prefer the Echo's, and plan on asking to switch back as they are fairly accurate and I have to "save" my veins as much as possible.

A comment on the Bayer Serum Test: the FDA approved use of this test is to monitor response to treatment for advanced metastatic cancer; my understanding is that it's not recommended as a diagnostic tool. The test is usually performed before treatment is started, to establish a baseline for circulating Her2+ cells, then performed at one month intervals to record response to the treatment. If the levels drop, it's considered that the treatment is effective.

Here's a link to the on-line discussion here with Dr.Walt Carney of Bayer/Oncogene, developers of the Bayer Serum Test:

Bayer Serum Test/Dr. Walt Carney
http://www.her2support.org/vbulletin...yer+serum+test

Hope this is helpful,
<3 Lolly

[Bob B]

heblaj01, tousled1, newgg, mts, jessica, RhondaH, Grace, and Lolly (I hope I have not left anyone out!):

Many thanks for your kind words and terrific advice.
You have given me so much information and areas to further research.

Some time ago, my sister and I were trying to get my Mom to go for a second opinion in the Philly area at centralized location that specializes in the type of problem she has, but she was reluctant to travel. I don't have the book in front of me at the moment ("Breast Cancer for Dummies" --- The "Dummy" series of books actually is pretty decent) so I can't name the medical facility but I do remember that the book said it was one of only 11 facilities in the nation dealing primarily with breast cancer.

Mom has been feeling decent. A month or so back she passed out twice but they haven't figured that one out. She appears to be somewhat tired but does do quite a lot. I hope the correct decision is made concerning the possibility of using the Herceptin. I would like to see her go for another opinion as I don't think we are getting enough information from her doctor to make the correct evaluation for it.

Will check back after looking into this issue further and following up on your suggestions.

Again, many thanks for your time and the concern you have shown.
It's good to have a place to go for some feedback.

Bob

[mts]

Bob B,

Is the place in Philly the Rena Rowan Breast Center at the University of Philadelphia ??? They were giving Herceptin to Stage I's as a preventative when no one else was. Its a teaching hospital, and my take on it is that they are not a revolving door cancer center trying to make a killing off cancer. Yes, the building is older (its the oldest university in the nation!) but- they get funding for research like no other!
I live in Florida and because of a trial UPenn had at the time (2004), I traveled there. The interesting thing- They found two tumors adjacent to my original lumpectomy that NEVER showed on the mammo or ultrasound here in Florida, AND I had clean margins. These would have been the so called "recurrences" if left unchecked. I now go to UPenn every year to see their very capable doc's. Granted, if I would have had a breast MRI prior to my lumpectomy, I probably would never have gone to UPenn. But as things turned out, I am glad I did go because they suggested tests that my onc (at the time) in Florida never thought of.
I also serve as a panelist for the congressionally directed breast cancer research program for the US gov't. This is the group that provides funding for breakthrough and innovative research for breast cancer. I was not surprised when UPenn received the highest score amongst the dozens of other hospitals throughout the nation.

Anyway, I know its far away, perhaps you can call them and see if they could refer you to someone nearby. They referred me to a UPenn graduate onc in Orlando and I could not be happier with him. I had gone to 3 oncs for opinions before I went to UPenn- never really felt satisfied. Eventually, you find what you need.

Keep us posted!

MTS