Herceptin alone?

Hi Jen36,

It is tough to go it "alone", and I don't know many who have, but of all of the ones I am aware of, none have recurred. Some are women in places where chemo was not offered to them at the time.

The "mixed cell composition" is one question. However, chemotherapy is thought not to be effective in dealing with stem cells, which are a stubborn problem regardless.

What they do not yet know is whether using chemo and all the support drugs for it that limit the natural ability of the immune system to work, plus trastuzumab, is better than instead supporting the immune system and using trastuzumab.

Since most of us early stage bc patients would do just fine even if all we had was surgery to remove the cancer, most of us who have done treatment do not know whether our personal treatment is doing the trick, or not.

One of the key accomplishments of treatment seems to be successfully achieving menopausal status, whether one does it by chemopause or by surgical removal of the ovaries or by other medical drug suppression of the ovaries.

I was diagnosed before the trials for trastuzumab were completed and was not told at the time that I was HER2 positive, even though my onc had my tumor tested for it and my insurance paid for the testing. I requested several times to participate in clinical trials, but my onc failed to tell me that I was eligible to participate at the time. I never had trastuzumab but I did have chemo and some tamoxifen.

Those of us who did chemo are at risk for the rest of our lives for all the complications of it as we age.

AlaskaAngel

Jen36, My onc told me that the reason they don't like to do Herceptin alone is because there just have not been enough studies to know whether it works as well alone. Maybe it does, who knows? I really debated about doing Herceptin alone too, didn't want the chemo poison in my body and didn't want to lose my hair. I eventually decided to go ahead with chemo, and I hope I didn't do more harm than good to myself. I used cold caps so at least I didn't have that privacy killing side effect of hair loss. I am done with chemo and have been getting Herceptin only now for about 5 months. My side effects from Herceptin are a bit of a runny nose, low blood counts, some muscle/joint aches but those have been getting better. None of them are more than a nuisance really.

soltantio, That is awesome that you are meeting with Dr. Slamon (I read his book too) and Dr. Vogel! I would love to hear what you learn.

I used Penguin Cold Caps www.msc-worldwide.com and www.rapunzelproject.orgdonated a biomed freezer to my chemo facility, although many women use them with dry ice. I had great success with them, didn't lose any hair. There is a topic "Cold Cap Users Past and Present to Save Hair" on this site. Good luck with all of your decisions.

My oncologist allowed me to take Herceptin without chemo. She said her patients who took Herceptin rarely have recurrences. She said before Herceptin this wasn't the case. I think there are a lot of oncologist who allows their patients to take Herceptin without chemo or Tamoxifen or Al's.

soltantio, At first they told me AC-TH but I was concerned about heart issues, because A is also harder on your heart. He switched it to TCH. Once I found out about the cold caps I was really glad I was doing TCH because the caps work better with that regime.

I asked my doctor that same question and he told me that right now, while it is most likely contained, is your best chance to wipe it out. If they miss even a tiny cell and it spreads, it is much harder to treat. Herceptin alone would be a whole lot easier than chemo. Sure wish they had the answer to that. Chemo was not as bad as I thought it would be though. I didn't feel bad the entire time, maybe 5 days each treatment. With the anti- nausea drugs, I never actually got sick, but sure felt like hell. I never looked sick though, and no one knew I had cancer unless I chose to tell them. That was the best thing about using the caps.

Hey, AA...good to see you here. Herceptin works, but with it comes side effects. The Herceptin (heart problems) maybe for life. I struggle with the treatments. I'm glad I have a good oncologist who cares.

AA...I just got back from another heart echo ultra sound. I really liked the lady who worked with me. She asked me if I felt all the heart palpitations. I said not like I did. I do feel them sometimes. She said it was difficult to take a picture due to them. She had to find spots where there weren't any pvc's for pics. I am curious to know what my EF is...as it determines if I'll continue or go on heart meds. AA what do you think of heart meds?

Sometimes I feel like I don't have cancer so I'm not really a cancer patient.  The echo nurse this morning said with 4 cancers I've gone through a lot. I said, not nearly as much as those who go through chemo treatments. She said, with 4 cancers and all the surgeries, and now the heart, I' shouldn't compare. I left the echo sound feeling like I'm in the same boat as those who go through harsher cancer treatments....especially now that I've got heart issues.  

Well, I have the rest of the day off so I'm going to do a little house cleaning and gardening. First day feeling half way good since Mondays Herceptin infusion.

soltantio, If  you are planning to use cold caps DON'T cut your hair. When I asked Frank (the inventor of Penguin cold caps) he told me the weight of my hair has kept my roots strong and that a trim was OK, but not to cut it. As far as my hair thinning, it didn't thin at all. I know most women say they lose some, but no one can tell except them. A few lose quite a bit, but it seems there is usually a specific reason they did, (didn't quite follow protocol, used a cold cap machine etc.). My helpers were awesome, they did everything right, and except for seeing a few more hairs on my shirts, I felt like a didn't lose any hair at all, it looked the same throughout chemo.

I don't have any chemo tips really, if you use cold caps you are preoccupied with doing them correctly and you actually don't think too much about the chemo part.

If you think you are going to try the caps, PM me and I will get you some names of women on here  who have blogs, tips, etc. about their experience. It involves commitment, but is it ever worth it!

evebarry, I think there is a topic on here for Herceptin only, something like Herceptin Side Effects Quick Poll.

AA... after this next week, I'll be doing Herceptin low dose every other week. If my echo dropped today, I'll either take a break or be given heart meds. Not sure. I don't know enough about heart meds. My oncologist would like for me to stay on it for a year even if it's at a low dose...because I'm doing nothing else to prevent a recurrence.

There are other women making the choice to do Herceptin alone. I wish they would post here so we could compare notes. There's been post elsewhere on bco who are doing herceptin alone.

Thanks AA for your post. I hope I am one of those who can move on and put all this behind me. If I have a Herceptin break, I will probably just quit it. I hopefully had enough to keep me from a cancer recurrence. Unless I have a recurrence, I won't go back on it. After all what I am doing now is preventive medicine.

My oncologist said when before going on Herceptin that I probably wouldn't have any side effects that those who did chemo and Herceptin were more likely to have heart problems and that was rare. The tech doing the baseline Herceptin said it would be a breeze. The nurse in the infusion room said basically the same thing. Well, it is important to see that without chemo there maybe side effects so others coming here will know that this can very well happen. My side effects have been pretty pronounced. My eyes have seriously weakened. I can see a difference in my skin. I feel stiff all over. The worse is the fatigue due to lower EF heart function. I can't image what it would be like for me if I had added chemo to the regime.

I'm recording my experience for those who do Herceptin alone or are thinking about it. Those who are younger may not have as serious side effects. Or maybe, because I'm highly sensitive to drugs, or allergic to certain foods that it puts me more at risk for a Herceptin reaction. Not sure why one person has Herceptin side affects and another doesn't.

I didn't get the feeling AA was policing this thread. From what I gathered she is here to support and help. I don't get tons of support here, maybe because I'm in a different camp in regard to treatment. I like AA because she has been a big encouragement and support to me. There are so many threads that deal with chemo, hormone therapy, and herceptin together. There's none that deal with Herceptin alone. I logged on to this thread hoping to find others who are just taking herceptin and having side effects and to what they are doing about it.

If anything AA was backing up my need to have such a thread for support. Maybe I should start such a thread...but, after Herceptin treatments I'm planning to move on for awhile. I'm here right now for Herceptin support. I need it.

Hi Everyone,

 So started treatment on June 29, 2012. I was suppose to do Taxol, but had allegic reaction and treatment was stopped. I did get the Herceptin have no side affects yet. Doctor is planning on adding different chemotherapy next visit not sure which one yet. But will keep those who only take Herceptin posted on side affects until things change. Good Luck to everyone.

Jen, how many herceptin treatments have you had? Have you had a muga or echo yet?

My eyes have gotten worse. Scary. I haven't had a runny nose, which I think is weird since it seems so common among those who take herceptin. I thought maybe it's because most women have also had chemo.

My oncologist said she's had very few patients who've taken Herceptin have a recurrence. I am hoping I don't have to do it for a year due to my drop in EF and fatigue. I find myself short of breath I suppose do to the heart/herceptin.

I have been on Herceptin since last december...with chemo until march 20 2012, then with radiation until June 12..I will be on Herceptin every 3 weeks until December. I am very tired still and have joint pain, and runny nose..I don't have bad SE's like i did with chemo but at this point I just want to feel normal!