Post-treatment options for ER/PR- Stage 3

[Val Pfeiffer]

Joe recently posted a question on a different thread entitled "Need Long Term Herceptin Use Info" and I have a related question.

My history is below, within my signature; after my primary chemo/radiation treatment, I did one year of Herceptin alone--triple doses every three weeks. I didn't think that there were any viable options for me after that, so rather than continue without any preventative measures, I decided to do a triple dose of Herceptin every three months for an indefinite period of time.

Is anyone else who was stage 3 and ER/PR negative doing this or something different post-treatment? If you are doing something different, what are you doing and why did you choose this?

thanks!
Val

[Val Pfeiffer]

One more thing--I was considering going on Tykerb, but now that I talked them into giving me brain MRIs twice a year, I feel better about catching brain mets early, so I thought I'd save Tykerb for a "rainy" day. Anyone's thoughts on this would be great too :-)

Val

[Alice]

Hi,
I am also stage 3 and had never considered being on any kind of chemo unless there was a recurrance. I was able to have Herceptin for about 7 months before it affected my heart. I was wandering if beeing on chemo before a recurance would lessen the chances of it working if cancer should come back? Also wouldn't it weaken your system unneccesaily? I will have to ask my onc when I go in. It may be a mute point though as I have a lump that I go to see the surgeon about on the 25th.
I would be interested to hear your points on the reasons for the treatments.
Alice

[Mary Anne in TX]

Hi Val!
I was diagnosed a month later than you and you can see that we are about the same diagnosis. You can also see what I have taken. I am still on herceptin every 3 months. I will ask to stay on it at least thru the second year, if possible. I see my onc. first Monday in August. He had said the last time I saw him that I would be on it "for a while" and I'm hoping that will mean thru the year. He did not feel the tykerb was a good choice for me for now. And since the herceptin works for me, I want to stay on it. I do a CA 27-29 the 3 weeks before I see him each time. It has gone done a bit the last few times and was at, I believe, 37 the last time. ma

[Andrea Barnett Budin]

Hi Val!

I so agree w/yr perspective -- taking PREVENTATIVE MEASURES to continue to fight the bc, now tamed but maybe lurking. As you can see from my signature below, my oncs have recommended I remain on longterm chemotherapy for the rest of my life (as of '98 w/met bc). At first I was downcast, remembering my experience w/4Adria+8CMF. I didn't want to live that way forever. But then came Herceptin and I can keep this up far into the future. I get regular ECHOs to be certain it's toxicity isn't messing with my EF, etc. I have a drippy nose and frail, thin, splitting nails. I am fatigued but have supplements that make me perky. I have dipping red bld cell counts but again my supplements I believe are helping me hold my own. TO "SUPPLEMENT" OR WAIT is a thread that lists my saviors.

I've been busy all day, it's 8PM and I'm still alive and alert and sending my love and prayers to all my Soul Sisters. I went shopping in Target (bought toys for my Calif babies coming to stay w/me for 3 wks Aug 1, worked on my book, visited my Boca babes (3 grandkids) and had dinner w/them, and am still going. Couldn't have done that prior to these new supplements I've added that give ENERGY to my chemo-induced anemic Self! I'm guessing the Taxotere, which annihilated my multiple liver tumors over nearly 9 mnths, messed w/my bone marrow some, w/permanent scars. But the Herceptin has kept me STABLE, NED all these yrs and I believe sustains me!

I've moved from the ev wk schedule to the triple dose ev 3 wks (since '01) which is great. Val, I never heard of your regimen. Is it insurance co related, saving $$$$$$????????? Or is it based on studies?????? Whatever, I pray it is your key to success. I swear, PREVENTATIVE MEDICINE is the key to remaining STABLE, without recurrance. And Herceptin is a truly easy way to go. Sending loving, healing energy to all my super Soul Sisters always... ANDI

[Alice]

I also agree that prevention is important. I worked hard to stay on Herceptin for more than 6 weeks. My only thought is that Herceptin is a monoconal antibody and Tamoxifen is a hermone supressor where Tykerb is a chemotherapy drug. Monoclonal antibodies prevent the overexpression of the cells, hormone supressors prevent the hormones from feeding the cells, but chemotherapy drugskill cells- good and bad- so unless there are known bad cells to kill, personally I think it is harmful. Just because Tykerb is taken in pill form doesn't mean it cant do harm.
This is just my opinion though. I may be forced to change my mind.

[Val Pfeiffer]

My oncologist and I decided on the quarterly Herceptin regime together. I had six months of Herceptin with the other chemo drugs (surgery in the middle of the six months), then after radiation I did the one year of triple dose every three weeks. After that I decided that I didn't want to quit Herceptin altogether, but I didn't want to continue every three weeks either--clinically it didn't seem right, and I guess I wanted a break.

I'm pretty sure I could've gotten insurance coverage to continue more frequent Herceptin. My insurance company is pretty compliant with what I ask for. But, no, there isn't any data or clinical study out there that made me decide to go on quarterly Herceptin. I'm going to do this indefinitely until something better comes along.

Hopefully I won't have to worry about Tykerb for awhile. I was worried about cancer cells that may have gotten into my head (where the Herceptin can't get them!), but now that I have the semi-annual MRIs, I'm not as concerned.

How often are you guys getting PETs and other scans to check for possible recurrences?

Val

[Andrea Barnett Budin]

AGAIN, BACK IN THE DAY ('95) AS A FIRST LINER -- I was shocked that there was no further scans (ev 8 wks w/chemo). It didn'tmake sense to me. I did do comprehensive bld tests ever 3 mnths.

In lat '97 my onc called to say everything was fine w/the bld tests. Oh that's good to hear. Well, there was some elevation in the liver enzymes. But it is a very slight elevation. I wouldn't worry about it.

3 mnths later -- the same conversation took place. My busy onc w/so many patients didn't even realize. (In Spirituality -- there are no coincidences.) I was beginning to worry.

3 mnths later -- same scenario. However this time I asked for an abdominal sonogram. Well, I guess I could substantiate that. Okay. I made the appt. The Radiologist looked and looked and apologized saying, I have to send you for a CT scan. I can't be sure of what I am looking at. (I think he knew, but hoped...) I made the CT appt (getting the scrip for it from my onc). Results came in. Abnormal cells the doc said over the phone. Why don't you and Paul come in this afternoon and we'll talk about it. Paul left work early and we went. Appears to be malignant cells. Do biopsy. Biopsy concluded multiple malignant tumors in the liver. Because *I* asked for it!

Taxotere for 9 mnths. Ev 8 wk scans. Afterwards, every 3 mnths. Finally I begged for ev 4 mnths, gaining confidence over the yrs and having 3 days of not being able to leave my toilet after drinking the drink for abd CT. Ok, but you can't go any longer! Ok. I stayed w/the program. Feb '06 I saw Pegram in Calif and he said that at this point I can graduate to ev 6 mnths.

I request a scrip for ev 6 mnth transvaginal pelvic sono -- to be told my ovaries are visualized and beautiful. I go to NY for this as in Fla *techs* perform the procedure and Radiologists *read* the results and write the report. I find the techs don't dig as aggressively (which is uncomfortable, but more conclusive). In NY the Radiologist always is able to visualize the ovaries, never tells me at your age they're probably atrophied.

I was getting ECHOs ev 6 mnths and Pegram has upped me to annually on this. I still get comprehensive bld ev 3 mnths (fasting), which includes my endocrinologist's requested bld panels. I went to her w/22 yrs of hot flashing all day that had become unbearable. She said high blood sugar can be the cause. I was glucose tolerance, etc. and though I am not diabetic I clinically qualify to be treated for high blood sugar. That has improved markedly, as have the hot flashes, though they have not been eradicated. The endocrin doc sees you as an entire being and I am thrilled w/all the addl info I have accrued about my body through her. It makes me think every cancer patient should see such a doc. It opens a whole new vista to me. Thyroid, estrodial, testosterone, a whole panalopy of areas never questioned by any of my oncs (who are rock stars, brilliant, cutting edge).

I too am staying on Herceptin until something better comes along. I'm hanging in there. As one of my oncs in NY said, Cancer isn't curable. It is a chronic condition. But we can control it once we find the right recipe for you. If one doesn't work, we have many at our disposal. Right now, Herceptin is controlling my defective gene and I am filled with elation for this gift of Life! With love to all, ANDI

[Val Pfeiffer]

Andi--very interesting situation, thanks for all the great information. And I have to say that judging from your picture, I thought you were younger than I -- and I'm 45!! You look great!

Val

[Andrea Barnett Budin]

MAYBE IT'S THE GLOW FOR THOSE GORGEOUS ORANGE TIPPED YELLOW ROSES (my favorite). They were given to me by my manicurist last yr for my Bday. I brought them home, cut them under warm water in the kitchen sink, put them in an antique looking amber glass vase (from Ross) and put that up on the bar top that separates the kitchen from the den. It lit up the whole house. They opened almost immediately and lived for over a wk. They were glorious, you just couldn't miss them whichever way you turned. I asked my husband to take a picture of them, to capture the moment, and in one I peeked through and got my face in to the act. Love that picture. It's just so cheery, matching my attitude I guess.

I wanted to mention that I take a whole bunch of supplements, recommended by my onc in NY who specializes in INTEGRATIVE ONCOLOGY and is an expert on supplements. My secret recipe for success is in the TO "SUPPLEMENT" OR WAIT THREAD within the HER2 group on the message board. In there is ALPHA LIPOIC ACID 300 X 2. It is an antioxidant, neutralizes free radicals, protects cells from damage, boosts your energy level and can cross the brain barrier. I thought the last bit of info would intrigue you. It gives me a degree of comfort any way.

Stay WELL, and glowing. Love your picture too! The young lady with the long blond hair. I'm just grateful mine is attached! When I feel the wind whip through my hair I delight in it unlike I ever did before. Life is ever so much more awesome than I realized before! Sending loving, healthy energy your way, and to all my sweet Soul Sisters... ANDI