Not Responding to herceptin

[PatriceinMS]

I have been a big fan of this site since I was diagnosed in April 2005. I am 34 years old and her2 positive and ER-. I have mets to my liver and have been on weekly herceptin and taxol for three months. I had a CT SCAN on Wed that revealed the mets in my liver have grown and the mass in my breast has not changed. I also have lymph node involvement. My onc. has said no to surgery from the start and wants to start me on adriamycin and cytoxan on Monday. Please, if there is anyone out there who has experienced this and has information they would like to share I would appreciate it.
Should I get a second opinion?, I welcome any recommendations. I had so much hope in herceptin and really dissappointed right now. But I'm a fighter and refuse to give up.

I don't understand any of this because I have not been sick one day. Not even on the taxol and herceptin. I am sorry for any spelling errors. I am very emotional right now.

[jojo]

Listen Patrice, you came to the right place! Although, sorry that you had to join us. But we welcome you to our club. :-)

It is perfectly normal that we feel disappointed in such episodes like this, but remember your fight is not over yet!! Allow yourself to wallow in a preferable & comfortable time frame. Then you'll bounce back & fight with all your willpower.

Everybody reacts to chemos & drugs differently & very individually. If I recall correctly, one lady here named Christine didn't have a response to her 1st chemo (I think A/C?), so she demanded that she stop & switch to other chemos & it worked for her.

You asked if you should try for a 2nd opinion.... Well, the order of your chemos caught my attention. Usually, onc's prescribe us A/C first, then either Taxol or Taxotere thereafter. Sometimes they do start out with the Taxane family, especially with Herceptin for people with early stage breast cancer. It seems like to me that you were late stage at original diagnosis, right? Did you ever ask your onc why he / she wanted to begin with Taxol before anything else?

Ultimately, it wouldn't hurt if you seeked 2nd opinion, anyway....

Hang in there & please keep us posted. Good luck!

[PatriceinMS]

Thanks for responding jo jo!!! Yes, this was my initial diagnosis. I don't know why she choose that combo first. What do you think about her decision about surgery?

[*_sally_*]

Hi Patrice, I was diagnosed March 04 with Stage IV Her2+++ er+pr+ 8/16 lymphnodes positive. It also spread to my liver. First I had a lumpectomy then sentinol node. Then I had the other 17 lymphnodes removed. It took about 3 months before I started my chemo which was Taxotere/Carboplatin/Herceptin every three weeks. After 6 treatments my spot on my liver was gone and I have been NED since. I have read that more people are avoiding surgery and tackling it with chemo. I guess everybody has different situations. If you are uncertain about anything maybe it wouldn't hurt to get a second opinion even if it's for peace of mind. I forgot to mention I am currently getting Herceptin every 3 weeks and I am on Femara. I am 37 years old and decided to have my ovaries removed to avoid any more Lupron shots. I've had 5 surgeries so far and I am going for a 6th to have reconstruction. Hopefully that will be my last. Take care and try to keep smiling. Sally

[Lisa]

Patrice,

All is not lost. You have SO many options.

First, though, how big is the lump in your breast and why does your onc not want to remove it? Sounds strange to me.

Second, you cannot take Herceptin and Adriamycin at the same heart because of possible heart reactions. And like many others, I did Adriamycin/Cytoxin and Taxol before my surgery.



Many of us have found that one combo with Herceptin doesn't work while another will. The one that helped my liver the most was Herceptin/Navelbine. Also, know that about 1/3 of women on Herceptin do not have the hoped for remission.

Unless you absolutely love and trust your onc, I'd say get a second opinion. Do you live near a Cancer Treatment Facility? There's no need to jump into a new treatment Monday if you're not ready.

Keep us posted.

Love and light,

Lisa

[Lisa]

One other thing...

If you have an appointment Monday, gather as many facts as you can this weekend. If you're not going to have a 2nd opinion, be armed with lots of questions.

Love and light,

Lisa

[*_Sandy H._*]

This is just a thought about the Herceptin. I was on and off it every few months depending if I was getting chemo. I went to a meeting where a Dr. Kim from Tufts in Mass. was doing gathering information on IBC. He told me that it takes 3 to 4 months for Hercpetin to get into the body and start working. So he said I should stay on it even if I am not on chemo. I am doing that and its been nearly a year and it does seem to be working. I started out with Adrm. and Taxatere the oncologist doesn't think it worked that well for me and then I had surgery and followed that with Herceptin and Taxol and later added carboplatin. I know I am not clean of the cancer but am stable and been off chemo 8 months now. Still on Herceptin. Lisa is correct in saying gather as much info as you can and be ready to ask questions. There are so many options out there and it will take both you and your doctor to find the right one. You have come to a good place for info, help and support. We are all here to help you. Some of us have been here at the beginning and some are new. We are all here for the same thing. My doctor says he likes it when I share new info and ask questions. Good luck, Hugs, Sandy

[PatriceinMS]

Thanks to all of you for your responses. I'm still learning a lot about this disease even as I write to you. I have been in shock since my diagnosis and I hate to admit that I have not asked a lot of hard questions of my onc.
I plan to do a lot of reading over the weekend and make a list of things to address with her when I talk to her again on Monday afternoon. I appreciate hearing from all of you. I read your posts all the time and glad that I have you to talk to.

The onc. I see is a member of a group of associates at a cancer center connected to one of four hospitals in our area called Baptist Hospital. We also have a University of Mississippi Medical Center that also has a cancer center, which I heard is also pretty good. I was referred to my onc. from a surgeon that I saw initially before my first scans.

I moved to Mississippi four years ago with my husband and eight year old daughter.
We don't know a lot of people in the area, but I have a co-worker that has given me some names of people to talk to about doctors in the area.

My mom in Alabama has also reminded me that I can pray and things will work out.
thanks again.

[*_Scott_*]

Patrice,

I know you've had a lot of advice already, but I'd feel guilty if I didn't put my two cents in. With all the positive results surrounding the Herceptin/Taxane combination the paradigm has begun to shift recently to start Her2/pos women with the Herceptin/Taxane combination and then follow with A/C after. The reason why they pick these two therapies is they are not cross resistant. In other words, if the cancer is resistant to the taxane it probably won't be resistant to the A/C and vise versa. My wife followed this sequence and is doing well. Someone mentioned the Herceptin/Navelbine combination which is also very good, but you already gave the Herceptin a shot with the Taxane.

I can't encourage you enough to get second or third opinions, but I think the oncologist is on the money in your situation. You could always follow the A/C with Herceptin afterwards, which your oncologist may already have planned. I am curious as to whether this is neoadjuvant(before surgery chemo) to make the tumor easier to remove from the breast, or if there is no plan to do surgery at all. I would think you would want to have it removed at some point. My wife who is also 34 said she will pray for you.

Best of luck,

SCOTT

[PatriceinMS]

Scott,


Thank you for your advice. The taxol and the herceptin where given neoadjuvant to shrink the tumors first. My onc seems really concerned about the liver. I don't have any symptoms of this and I feel really blessed.
I'll pray for you and your wife.

[Janet/FL]

Patricia
There has been so much talk on this list re: Taxol vs. Taxotere and Herceptin.
Some do well on one combintion and another with the other. The studies, I believe, show that the Taxotere/Herceptin combo has the best results so you might about a switch of drugs.
I would definitely get a 2nd and maybe a 3rd opinion.
Hugs for all this hard stuff,
Janet

[Lisa]

Scott,

This new pendulum swing is news to me. Are you saying that doctors are now treating node positive, HER2 pos, women with Herceptin/chemo BEFORE A/C. To me this doesn't make a lot of sense for those of us who are not going to be helped a lot by Herceptin. Here's why. How long would you take Herceptin/some chemo before you stop and start A/C. Then if that doesn't work, do you just go back to Herceptin.

Can you explain more about what you know? Thanks.

Love and light,

Lisa

[Kristen]

Patricia,
In regards to your onc. Know what kind of doctor you want. It's so much easier now that later. Later you can't go back and "redo". There are so many types of oncs. Ones who are a team players and ones that play god. I wish I had found this site before I started treatment. I was so scared, I just clung to my onc. and wanted her to save my life. Well she ended up being in the god like syndrome. Not a good match. I learned here to take a part in your treatment and to learn what you are getting and get what you want.
Listen to your gut and it will all work out. You don't owe anybody anything, remember it's your life. Best to you. Take Care, k

[*_Scott_*]

Hi Lisa,

From what I've learned there is no guarantee that A/C is going to be effective either, so how long do you wait before switching to another treatment while on A/C? All new treatments start out in clinical trials in the metastatic setting and work their way up to primary adjuvant therapy just like A/C did at one point to replace CMF. So, when the taxanes proved effective in the metastatic setting, they became an add-on to A/C. They really are similar in terms of efficacy, the beauty is sometimes when A/C doesn't work, taxanes will, or vice versa due to the lack of cross resistance.
With all the recent positiive data about combining Herceptin and a taxane, oncologists are starting to use this as a first line therapy for Her2 positiive women.

Best of luck,

Scott

[Gina]

Dear Patricia,

DEEP BREATH! So sorry to hear what you are experiencing. Onc's freak out so over liver spots, you'd think it was LEPROSY on those CT scans about to jump off the wall and infect the oncs themselves..smile...BUT those of us with her-2 who have had them "come" and watched, in awe, as Herceptin made them "go" are not so easily ruffled...smile.

First of all, BEST ADVICE: KNOW AS MUCH AS YOU CAN about your case: You mention you are ER negative. Are you also PR -? Find out because if you are completely hormonal negative, your case will not respond to hormonal treatment options and if you really are not responding to herceptin (which, if you have her-2, I doubt, will explain more later), puts you in scary place.

Second: How positive for her-2 are you (1+, 2+, 3+) or better yet, how high is the serum her-2 blood marker (20? 80? 200? 6000?)??? If your oncologist has not checked your serum her-2, I would ask her to do so ASAP. If you don't have any serum her-2 data, get access to your bloodwork and see if any body even thought to run a CA 27/29. It is the next best thing to the serum her-2 as in many cases (but not all), it correlates very well with the serum her-2, in interesting mathematical ways. For instance, if you find one taken early on, say the CA 27/29 was 60, multiply roughly by 3 or 3.5 and you will know your serum her-2 is at least greater than 180, all things being equal...Normal serum her-2 is less than 15 on some assays, less than 12 on others, FYI. The more CA 27/29 or her-2 protein you have in your blood, the higher your tumor load. Why is this important? Two reasons: if you are only WEAKLY positive for her-2 (say with FISH its 1+) or say your markers are only slightly elevated 40's 50's or so, then the her-2 element may not be the principal element involved which is promoting tumor growth and therefore herceptin will not be making a big dent in your tumor, even combined with the chemo. As we do not know for sure if you are PR positive, if you are, your tumor growth could be being promoted by a more hormonal element and will need to be treated as such, still in conjuction with herceptin, provided you are at least somewhat her-2 positive. The SECOND reason these numbers are important to find out NOW is so you can measure quickly which direction WHATEVER TREATMENT YOU DECIDE is going. Take for instance the earlier example of the CA 27/29. If your onc checked it recently, compare it to earlier bloodwork. If it is going uP UP UP, your treatment is not agressive enough to keep up with, what appears to be, a rather agressive cancer, I am sorry to say. If however, you find out that you are HER-2 3+ and/or have high amount of serum her-2 marker in your blood, that is actually a good thing as it means you probably will just need a HIGHER DOSING of Herceptin. From your comment that you had experienced basically no side effects from the initial treatment, I suspect you are not being given enough herceptin to do much good. Usually the dose for every week is only 2mg/per Kg of body weight, I think. For very aggressive tumor burden, THIS IS NOT ENOUGH--especially with the tumor still in you, but oncs don't have much experience with what is enough. Also, most of us who have used Herceptin for years, initially had the tumor removed FIRST as it is constantly dumping proteins and debris into the system, then we progressed to CAF, then taxol or taxotere, then radiation, then herceptin..blah, blah. By that time, the tumor burden was somewhat reduced and the herceptin could do what it does best, even at low 2mg per week doses...but even at its best, all the Herceptin does is help us all run the RED QUEEN's RACE (Alice through the Looking Glass). What that means is that those of us who are her-2 positive tend to over-produce the protein continually and really all the herceptin does is knock the over-expression back down, giving us a chance to maintain a sort of precarious homeostasis. Make no mistake, Herceptin, GREAT THOUGH IT IS, in many ways is just a band -aid solution that must be continually administered in the PRECISE dosage for YOUR individual biochemistry/weight and is no true "cure." All that said, here is my take on what your onc is trying to do--her heart is in the right place. She is trying to spare you the perils of surgery and the incredibly sad aftermath of losing a whole breast (been there done that...smile). Her method is to start with a relatively mild to moderate approach and then move up the oncology ladder to ever and ever more agressive approaches, not wanting to cause more harm than necessary. In my experience, an oncologist of such compassion and humanity is rare. If you educate yourself well and if she is not a "GOD" type, you may be able to work with her. As Eliz Taylor used to say "THERE IS SO LITTLE DIFFERENCE AMONG HUSBANDS that you might as well stay married to the first one any way..." could well be applied to oncs. I say this as I am concerned that you may not have a lot of "extra time" to run around town getting other opions, though, if you are able, I would try it. NOW, that said, IF AND ONLY IF YOU TURN OUT TO BE ER-/PR- and Her-2 3+. Here are some things you can discuss with your current onc. Since starting the herceptin treatment, are you sure you haven't gained any weight or that if you have, the onc has recalculated your herceptin dosage correctly. It is amazing the difference even 8 pounds off can make, trust me...I KNOW...sad smile. Before putting you on CAF or something worse, would your current ONC consider prescribing you a Z-pak (take 4 all at once, then the other 3 all at once the next day and then agree to restart you the next day after the antibiotics on a loading dose of say 8mg/per kg of your current body weight of herceptin (IMPORTANT: WITHOUT PREMEDS), and then the next week, reducing you to 6mg and then keep you at 6mg for awhile--being careful to take both your CA 27/29 and Serum Her-2 markers weekly (prior to the herceptin infusion) so you both can tell IMMEDIATELY if the new dosing stategy is working??? BE SURE TO GET A MUGA SCAN BEFORE taking the higher RELOADING DOSE of HERCEPTIN. Your scan should be 55 or better to attempt handling the 8mg. I suggest this option as I too would like to see your breast conserved and liver and digestion saved. I once had serum her-2 in excess of 600 and this new dosing regimen brought my numbers straight down. The number was halved from the very first treatment and normal after only 5 weeks, my liver spots diminished and disappeared across the board, my oncs and specialists had never seen anything like this (back in '99) and there was no chemo involved. Since then, after using Herceptin in almost as many ways as you can imagine and various dosing levels, I maintain at this time using a 6mg dose of herceptin once every 6 weeks coupled with a good diet. At one point, there were 12 lesions as big as 50 cent pieces, quarters, nickels and dimes (according to my radiologist) in my liver, so I do know a little about this stuff...smile. I really do think the herceptin is hitting something or your breast tumor would most likely be getting much, much worse, but it is not hitting hard enough. WHEN YOU TAKE high loading doses of herceptin, it is painful...you may run a horrible fever and have pain in your whole body like you are going to die for several hours...but the next morning, you will wake up and feel better than you have in ages...or at least that was my experience. Also, just a thought, be CERTAIN you are not taking any Benadryl with the HERCEPTIN at this point...they used to give it to us on the first dose just to avoid allergy, but if you already KNOW YOU ARE NOT ALLERGIC, don't take it (or the tylenol NEVER use tylenol with liver involvement--the tylenol can actually be making the liver spots worse) as the Benadryl dampens the immune response you so desperately need to make the HERCEPTIN WORK AT ITS OPTIMUM. [the jury is still out, but the way I think herceptin works is it tags all the cells with her-2 receptors with little "flags" so that now your immune system can go in, see where the cells to be destroyed are, and then get rid of them...if you are taking benadryl, the immune system will not be able to do its job as well as it needs to be and that could be causing you not to respond as well as your onc had hoped. Also, by taking the Z -pak first, you are REVVING uP the immune system. It wouldn't hurt to be sure you are getting a diet rich in magnesium, zinc, and vit A & D with moderate amounts of oleic and other essential fatty acids but don't over do it--avoid Free calcium like the plague...sigh... Hope some of this is useful, but again, KNOW YOUR CASE, BE YOUR OWN ADVOCATE. There are many ways to skin the her-2 cat...smile...Best of luck, Gina GPOPP@COMCAST.NET PS. will attach a LAYMAN's version of the serum her-2 you can take to your onc:
The Serum Her-2 Test
How is it used?
Her-2/neu testing is used to help determine how aggressive a breast cancer tumour is likely to be.

It is also used as a predictor of response to therapy, such as hormone therapy and chemotherapy.

The serum Her2/neu test is sometimes used to monitor cancer therapy. If the level is initially elevated then falls, it is likely that treatment is working; if it stays elevated, treatment is not working; and if the level falls then rises, the cancer may be recurring. [This has been my experience, when the serum numbers were high, the cancer was progressing, when the seurm numbers were 12 or less, the cancer was being controlled by the Herceptin alone (plus diet).]

When is it requested?
Her-2/neu testing is recommended as part of an initial workup of invasive breast cancer and is sometimes done with recurrent breast cancer. It is not diagnostic but helps the doctor determine treatment options and understand more about the tumour’s characteristics.

Serum Her-2/neu is sometimes requested initially to establish a baseline and then, if elevated, used to monitor cancer treatment. However, this method is not widely used because levels are only elevated when a large amount of cancer is present so early cancers are likely to be negative for serum Her-2/neu. [This has NOT been my experience in actual practice. I have found that the serum Her-2 is often the first signaler that there is a problem...often going out of range WEEKS before the CA 27/29 does (which is further downstream) and MONTHS before new lesions can be spotted on CT scans...FYI.-GP]

What does the test result mean?
If an IHC Her-2/neu test is positive, it means that the Her-2/neu gene is over-expressing (producing more than a normal amount of) the Her-2/neu protein. If a FISH test is done, then amplification (production of too many copies) of the Her-2/neu gene can be detected. If either of these is positive, then the patient is likely to have a tumour that is aggressive, that will respond poorly to hormone treatment, and that will be resistant to chemotherapy. These patients may be considered candidates for Herceptin therapy. [See "Is there anything else I should know?"]

If the IHC is negative but the FISH is positive, the patient still may benefit from Herceptin, but if both are negative, the treatment will not be useful [In my experience with others using these markers, this has been the case..., rarely, but still on occasion, you will find someone who does not show Her-2 on the tumor with the FISH but it will later be found in the blood thanks to the Serum Her-2 testing and these folks indeed do respond well to Herceptin. Conversely, though, one must be careful as timing is EVERYTHING. A person who had a tumor test positive for Her-2 with the FISH, can have a "NORMAL" serum her-2 following treatment, if the treatment has been successful, whether Herceptin was included or not. Sometimes CAF or Taxotere can bring the markers within normal range, for a time. So, one must take the serum marker over time and WITH the CA 27/29 for more assured results. BUT, if NO her-2 can be proven to be involved, it is usually TRUE in practice, that the HERCEPTIN will be of no value..., but because of the innate trickiness and variable qualities of the Serum Her-2 which moves up and down with an amazing velocity, if the patient had NO OTHER HOPE and as the Herceptin is relatively non-toxic compared to other strategies..., in certain cases, I might still consider a couple of cycles just to BE ABSOLUTELY CERTAIN, especially if the cancer was exhibiting other properties similar to the Her-2 mediated cancers like being very agressive, perhaps inflammatory, and ER-PR-. I think it would still be worth a shot, but that is just my opinion. I have no practice or studies to support it.]

Is there anything else I should know?
Her-2/neu-positive tumours are susceptible to Herceptin (trastuzumab), a therapy that was created to target Her-2/neu protein. Herceptin, an antibody made in the laboratory, attaches itself to the excess protein molecules and inhibits the growth of the cancer. The development of this specialized therapy has increased the use of Her-2/neu testing. Herceptin may be used alone or with some chemotherapy agents but is only useful in those who have Her-2/neu amplification and protein over-expression.

Her-2/neu testing is not available in every laboratory. Both IHC and FISH require experience and special training to perform and interpret. Your doctor will probably send your sample to a reference laboratory and the results may take several weeks to return. [This has not necessarily been the case in my experience. Back in 2003, it was difficult to get and I had to go through Specialty Labs on the West Coast, but since late 2003, it has been readily availalbe from both Labcorps and Quest and MANY other labs around the country and is no more difficult to draw than a CBC and the results come back in as little as 2 to 4 business days, at least that has been my experience here on the EAST coast in the DC area.]

It takes a small amount of cancer tissue to perform the Her-2/neu test. If a sufficient sample is not available, your doctor may try running a serum Her-2/neu test and/or make an assumption that you are Her-2/neu-positive in order to broaden your treatment options.

[Guest]

Gina,


Thanks for the information.

[PatriceinMS]

Gina,

Wow! Thanks for all the information. I am ready to go talk to my onc. on Monday. I'm a big fan of Elizabeth Taylor. Everyone on this site is so positive and a big inspiration to me.

Thanks to all.

[Gina]

Patrice (inMS),

How did it go, MONDAY?? Please stay positive and keep strong. You will get this all under control...there are just so many ways to do it and every body's body chemistry is different...sigh, but you are NOT alone. So many of us have walked down the path you are on right now and we are still here. Remember, we have NOTHING to fear but fear itself--JFK.

I like Elizabeth Taylor a lot too!!! In the meantime, I don't know if I mentioned it, but raspberry and echinachea tea always helped my liver mets be less painful, to me "in my mind" at least, seemed as though it "eased the inflamation". Add a little honey. At the very least, both are great comfort measures...track down some of my other posts on my whacky zinc on the feet tips and diet and supplement remedies. Believe in yourself. In the end, it is the body that will heal itself, we are only "helping" it along.

Hang in there and let us hear how it all turned out. Let us know your exact DX and her-2 status so we can offer more EXACT information regarding your case.

Best regards,
Gina