We are 144,996 members in 73 forums discussing 114,812 topics.

Help with Abbreviations

All TopicsForum: HER2/neu Positive Breast Cancer → Topic: Herceptin alone?

Topic: Herceptin alone?

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: May 21, 2012 05:45AM

Jen36 wrote:

I will be starting Herceptin in a few weeks. Although I've had two oncologist recommend chemo as well I have opted to only do Herceptin and Tamoxifan. My tumor is less than 1cm, my nodes were negative, but the tumor was HER2+ and estrogen+. My questions are has anyone else chose this treatment too and not done the suggested chemo and what are some side effects of Herceptin alone ? Thank you

Log in to post a reply

Page 1 of 2 (42 results)

Posts 1 - 30 (42 total)

Log in to post a reply

May 21, 2012 07:47AM Hindsfeet wrote:

You might find more interest in the HER2+ THREADS. Maybe the mods can move this thread to the her+ board.

I' chose herceptin without tamoxifen or chemo (both strongly recommended). I am sooo glad that I chose only herceptin. I've had enough problems in adjusting to the herceptin infusions and can't imagine what it would had been like doing more. My husband read in the paper this week that there is a study going on now for women doing herceptin only, without chemo.

Most don't have side effects with the herceptin infusions. I've have had several side effects. After the second infusion my EF went down 15 pts. Someone suggested Coq10 ...which has helped a lot. It brought my EF up to 55. I've developed strong palpitations from the herceptin. It's weird to hear your heart pounding. It's not as bad as it was after the first 2 infusions.

I've read somewhere that taking weekly herceptin is easier on the heart. For this reason, I'm trying the weekly infusions for the next 3 months.

The other side effects for me are fatigue, slower wound healing, eyes, and lower immunity (more mouth sores ... canker since starting herceptin).

Hope it goes well with you.

Log in to post a reply

May 21, 2012 09:51AM Jen36 wrote:

Thank you so much for your reply. I do wish the study on Herceptin alone was already out there.

Dx 2/24/2012, IDC, <1cm, Stage Ib, Grade 3, 0/2 nodes, ER+/PR+, HER2+
Log in to post a reply

May 21, 2012 11:57AM Jennt28 wrote:

Jen, most tumours are of mixed "status" ie: not just all made up of the same type of cells. Mine for instance was 100%ER+ but only 80%PR positive. This is the reason why they think chemo also helps - because it treats any cancer cells left over that aren't HER2+ .

Also, studies have already shown that the herceptin cardiotoxicity is not dose dependent ie: if you are going to get it you'll get it whether you do weekly or three weekly. So, I wouldn't panic about that.

I'm doing chemo and herceptin - it sucks. I've had to put my big girl pants on to accept all this toxicity risk - but the potential benefits outweigh the risks (I work in cancer clinical research so am very risk/benefit aware...).

Good luck with whatever you decide :-)

Jenn

Jennt28 jennt28.wordpress.com/ - 3 x FEC, 11x weekly Taxol, 12 months Herceptin (end March 2013), 12 days rads (quit), BMX with recon, Tamoxifen

Dx 12/1/2011, IDC, 2cm, Stage IIa, Grade 3, 1/2 nodes, ER+/PR+, HER2+Surgery 12/07/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 09/28/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: TRAM flap (Both)
Log in to post a reply

May 21, 2012 01:05PM, edited May 21, 2012 01:07PM by AlaskaAngel

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

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

May 29, 2012 06:29PM zumbadancer wrote:

I'm also choosing to do neoadjuvent (prior to mastectomy surgery) Herceptin alone without chemo .  I feel this is the best decison for me.  
Log in to post a reply

May 29, 2012 06:59PM Laura5 wrote:

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.
Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

May 29, 2012 10:33PM Hindsfeet wrote:

One reason  to why I chose herceptin alone is because taking it with chemo seem counter productive. No one seem to answer the question I have with taking them together in that if chemo kills the immune system then we have no killer cells (immunity) to go after the HERCEPTIN that is locked onto The HER2+++ cancer cell. And, if the herceptin stopped the aggressive, fast turn over cancer cells from moving then the chemo (that goes after fast moving cells) won't noticed her2+++ cancer cells because they've been stopped in their tracks by herceptin.

I asked my oncologist this question and she just listened without giving me a answer. Everyone seems to go around my observation or question without giving me a satisfactual answer.

Log in to post a reply

Jun 25, 2012 05:57AM Laura5 wrote:

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.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

Jun 25, 2012 01:47PM LPR wrote:

Soltantio- I spoke with the assistant of Dr Charles Vogel today and she did confirm that indeed he does administer the Herceptin without chemo.  After he reviews all the surgery and path reports he then decides if this is the appropriate course of treatment.  If you want to PM me I will give you the contact information.  Good luck!!!

Dx 2/3/2012, <1cm, Stage I, ER-/PR-, HER2+Surgery 02/28/2012 Lumpectomy (Left)Radiation Therapy 04/10/2012 External
Log in to post a reply

Jun 25, 2012 09:27PM Hindsfeet wrote:

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.

Log in to post a reply

Jun 26, 2012 06:04AM Laura5 wrote:

soltantio, The worst side effect is heart related, so they will do MUGA scans periodically to make sure your heart is not being harmed. I worry about it too, but would worry much more about being Her2+ without it.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

Jun 27, 2012 07:01AM Laura5 wrote:

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.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

Jun 27, 2012 12:51PM, edited Jun 27, 2012 12:53PM by AlaskaAngel

It is hard to keep the entire picture in mind when dealing with bc, and when dealing with the fact that the medical profession is unable to tell which therapy will work for certain with which patient, and doesn't even know why for sure yet.

Those of us who did chemo are at risk for complications from it for the rest of our lives. 

There is not yet much data for the long-term effects of the newer chemotherapies used in the last 10 years.

Chemo may not be effective against stem cells.

Use of Herceptin alone allows one's natural immune system to remain strong, instead of beating it up repeatedly for an extended period of time.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

Jun 27, 2012 10:19PM Hindsfeet wrote:

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.

Log in to post a reply

Jun 28, 2012 12:48PM AlaskaAngel wrote:

Hi evebarry - I've been watching your struggle and your progress from the sidelines.  Had you been treated by the onc I had, you would have received the heart-risky Adriamycin and the Cytoxan and the fluorouracil, but not the sometimes heart-risky Herceptin to deal with your complicated situation. I'm so glad you are getting better treatment by your own careful process, and are being treated cautiously, so that you can get through 6 months of it successfully, with your immune system to help you out as much as possible. It takes brains, courage and determination....

A.A.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

Jun 28, 2012 01:34PM Hindsfeet wrote:

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.

Log in to post a reply

Jun 28, 2012 04:58PM, edited Jun 28, 2012 05:00PM by Hindsfeet

I'm a little confused. Is this a Herceptin alone thread? I wish there were more Herceptin alone posting here so we can compare side effects. It seems if you are taking other treatments such as chemo that you wouldn't know for sure if your side effects were from which treatment. Losing hair and nerve loss for sure is from chemo, but other side effects as extreme fatigue, heart issues and etc could be chemo or herceptin.

Log in to post a reply

Jun 28, 2012 06:17PM Laura5 wrote:

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.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

Jun 28, 2012 08:12PM, edited Jun 28, 2012 08:21PM by AlaskaAngel

soltantio and laura5,

This thread is actually for those who want to know about doing Herceptin alone -- and not doing chemotherapy.

Evebarry,

Have they given you any real break from the trastuzumab schedule you have been on, to let you find out if your echo slowly improves without drugs? Or have you been continuing to do the Herceptin on schedule? You are something of a pioneer with this, so providers may not know a lot yet either about the capacity to recover in regard to being chemo-naive and using trastuzumab alone.

I see that you are using CoQ10, which I use too because of the Adriamycin I had. I am going to see if I can get an echo now that I am 10 years out, just to have a comparison for the effect with aging.

A.A.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

Jun 28, 2012 09:24PM Hindsfeet wrote:

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.

Log in to post a reply

Jun 29, 2012 12:47AM AlaskaAngel wrote:

My very rough guess is that unless you happen to have some other condition that has effects on the heart as well (like hypertension), if your echo is just below the bottom of acceptable they may prefer to do a break from the Herceptin to see whether there an improvement, and whether any improvement in your echo is enough for you to go back on Herceptin without the use of cardiac drugs.

Over time I've seen more of those who never did chemo that was recommended but who did Herceptin alone on HER2support.org. There was a window in time between the completion of the original trials and the official approval when it was easier for early stage bc patients to get it prescribed off-label, but those patients aren't very active on the boards now because they are so far out from treatment and have moved on. None of the ones I have seen have recurred. I don't recall any that had cardiac problems with just the Herceptin, and I know that is disappointing.

I have seen many who did both chemo and Herceptin whose echos were a little below the lower edge of acceptable, who stopped Herceptin for a brief time and their echos improved enough for them to complete it.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

Jun 29, 2012 02:14AM, edited Jun 29, 2012 04:03PM by Hindsfeet

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.

Log in to post a reply

Jun 29, 2012 06:11AM Laura5 wrote:

AA, Didn't know you were the thread police.

We are all here trying to help each other cope with this awful disease.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+Chemotherapy 08/25/2011 carboplatin, TaxotereTargeted Therapy 08/25/2011 Herceptin
Log in to post a reply

Jun 29, 2012 04:09PM Hindsfeet wrote:

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.

Log in to post a reply

Jun 29, 2012 04:57PM AlaskaAngel wrote:

Hi Laura5,

The confusion about the thread is understandable, because those who ended up posting about using chemo were originally on track responding to the OP and staying on point about the question of the use of Herceptin alone without chemo. Then as time went by, that conversation veered entirely away from the OP into chemo and cold caps, which was not what this thread was about.

Here is the OP, which clearly identifies the purpose of this thread:

"I will be starting Herceptin in a few weeks. Although I've had two oncologist recommend chemo as well I have opted to only do Herceptin and Tamoxifan. My tumor is less than 1cm, my nodes were negative, but the tumor was HER2+ and estrogen+. My questions are has anyone else chose this treatment too and not done the suggested chemo and what are some side effects of Herceptin alone ? "

There are lots and lots of threads that are all about the experience and questions involving chemotherapy for support. This one is for support of the OP and those who are not doing chemotherapy and who want to hear from others who have info that is particularly helpful for their situation.

A.A.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
Log in to post a reply

Jun 30, 2012 09:33AM floridatworeds wrote:

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.

Dx 5/7/2012, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2+Chemotherapy 06/29/2012 Abraxane
Log in to post a reply

Jul 1, 2012 12:09AM Jen36 wrote:

I started the thread Herceptin alone because like eveberry I too was desperate to know what others that have gone this course of treatment have endured. I am 36 years and have experienced some SE with the Herceptin. These include weakness, fatigue, swelling of hands & feet, blurred vision, nose sores, itchy eyes, runny nose, and headaches. Also, I am curious as to how successful this was on eliminating cancer (or not) for others that
that have done Herceptin alone.

Dx 2/24/2012, IDC, <1cm, Stage Ib, Grade 3, 0/2 nodes, ER+/PR+, HER2+
Log in to post a reply

Jul 1, 2012 12:36AM Hindsfeet wrote:

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.

Log in to post a reply

Jul 1, 2012 11:31PM Jen36 wrote:

This past Friday I had my 2nd Herceptin treatment. I had a MUGA scan prior to my first treatment. My EF was 63. I go back to my oncologist in 3 weeks & I'll ask then if or when I'll have my next scan.

Dx 2/24/2012, IDC, <1cm, Stage Ib, Grade 3, 0/2 nodes, ER+/PR+, HER2+
Log in to post a reply

Jul 2, 2012 07:14AM jittersmom wrote:

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!

Dx 10/12/2011, IDC, 2cm, Stage II, 0/2 nodes, ER+/PR-, HER2+Surgery 10/27/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 11/10/2011 Lumpectomy (Right)Chemotherapy 12/06/2011 carboplatin, TaxotereTargeted Therapy 12/06/2011 HerceptinRadiation Therapy 04/25/2012 ExternalHormonal Therapy 06/14/2012 TamoxifenHormonal Therapy 01/13/2013 Femara

Page 1 of 2 (42 results)