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All TopicsForum: HER2+ (Positive) Breast Cancer → Topic: Why can't I get herceptin without chemo?

Topic: Why can't I get herceptin without chemo?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: May 10, 2012 11:04PM

Blythers wrote:

This is my first post and I don't know if I am doing this right. It seems like you all have acronyms and abbreviations that I don't understand. Here goes:

I had a partial mastectomy on March 6 with a follow-up on April 2 to clean up the anterior margin. Three lymph nodes were removed and all were clear, no evidence of metastatic OR micrometastasis carcinoma. The tumor was .9 cm, Stage One (tT1B, TM0,MO) invasive ductal carcinoma, moderately differentiated. Estrogen and progesteren positive and Her2/neu amplified at 3.01.

Two oncs (from my medical group) say I need chemo in order to get the herceptin which is what I really need. Without the Her2/neu, no one would be recommending chemo. I saw in another forum that some oncs are offering herceptin without chemo. My second opinion onc did offer the herceptin without chemo but my insurance denied my appeal to see him as he's 'not in my group". Does anyone have ideas about getting what I need? My group onc so much as told me that herceptin without checmo would be considered experimental. That just seems crazy. How can I find a clinical trial. All the ones on line that I have found are for Stage 4 patients.

Right here, right now Dx 2/29/2012, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Chemotherapy 6/7/2012 AC + T (Taxol)
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May 10, 2012 11:11PM NWArtLady wrote:

Hi Blythers,

I am also triple positive like you and also stage 1.  My oncologist had me do surgery (partial mastectomy), chemo, radiation, and now I am doing herceptin and tamoxifen.  My cancer was an aggressive form (Her2 positive and grade 3), so we treated it aggressively.

Hope this helps.  There is a triple positive forum filled with experienced ladies in our situation; if you were to post this question there, you would get even more answers.

Hope this helps!

Just keep swimming, just keep swimming... ~Dory
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May 10, 2012 11:14PM Blythers wrote:

Where do I find that triple positive forum? The list only has a Triple Negative showing. I'm new on this. I can"t find stuff.

Right here, right now Dx 2/29/2012, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Chemotherapy 6/7/2012 AC + T (Taxol)
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May 10, 2012 11:19PM Joanne58 wrote:

There was a woman getting Herceptin, only, at Kaiser Permanente (my health care provider).  She refused chemo, but wanted Herceptin and received it--no problem.  I guess it depends on your insurance. I had chemo first, then Herceptin alone, which is not the standard of care.  I hope you receive what you believe is best for your case.  Good luck!

"There is beauty all around when there's love at home." --John H. McNaughton Dx 9/7/2010, IDC, Left, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 9/16/2010 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/28/2010 AC Targeted Therapy 1/21/2011 Herceptin (trastuzumab) Radiation Therapy 3/23/2011 Hormonal Therapy 4/27/2011
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May 10, 2012 11:23PM NWArtLady wrote:

Try this link for the Triple Positive Group: community.breastcancer.org/for...

I hope it works!

Just keep swimming, just keep swimming... ~Dory
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May 10, 2012 11:23PM Blythers wrote:

Thank you. That's awesome. I am in California and I needed to see that! I can wait till November: Open season.

Right here, right now Dx 2/29/2012, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Chemotherapy 6/7/2012 AC + T (Taxol)
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May 10, 2012 11:30PM Joanne58 wrote:

The "TRIPLE POSITIVE GROUP" is in this same forum (Her2) that you've posted in :)

"There is beauty all around when there's love at home." --John H. McNaughton Dx 9/7/2010, IDC, Left, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 9/16/2010 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/28/2010 AC Targeted Therapy 1/21/2011 Herceptin (trastuzumab) Radiation Therapy 3/23/2011 Hormonal Therapy 4/27/2011
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May 12, 2012 01:46PM Hindsfeet wrote:

I am stage 1a, and chose herceptin only. My oncologist highly advised chemo, and hormonal therapy. Because my oncologist feared I would do nothing she gave me herceptin only. Whatever the oncologist recommends pretty much is what the insurance company will do. If your doctors says they strongly recommended both ar none then perhaps your insurance will to. For example, my insurance said they only approve 2 mastectomy surgeries. I've already had two and will definately need one more to improve my new or do something to give me simetry. I called my insurance company and they said it is the surgeon who must make that call that is if I need another surgery. They will order it giving reason for it and if it's good enough they approve. So..get a surgeon who is fighting for what you want.

One of my breast cancer surgeons said there were very few oncologist she knew who had good bed side manners. I don't know if this is true or not, but I would shop around for someone who will listen to your wishes. It's your life, and you are the one who will live with it.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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May 12, 2012 04:08PM Blythers wrote:

The second opinion onc is marvelous. I am not even his patient and he answered my email in less than 12 hours and the CALLED me with more explanation and told me to ask my onc to get a mammaprint. He said they can even figure out if my particular her2/neu is the kind that responds to hormone therapy. I might be able to switch to his PPO during open season. After reading some of these posts it seems I don't have to anything this minute. Relief.

Right here, right now Dx 2/29/2012, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Chemotherapy 6/7/2012 AC + T (Taxol)
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May 13, 2012 02:11PM Sassa wrote:

Blythers,

Let me put this in straight language.  You are HER2+, that makes your cancer aggressive.  HER2+ breast cancer  can also spread through the blood and not go through the lymph nodes.

You can not wait until November to change your insurance.  If you do, you a chance ( 1 in 4 or 25%) of finding out that your cancer has metastasized outside the breast.  In that case, you will face a lot rougher treatment in the hopes of possibly extending your life for a few more years.

Get into treatment now and you will probably be a long term NED (no evidence of disease) breast cancer patient.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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May 13, 2012 05:37PM Letlet wrote:

I think it was around 30 years ago that when you found out that your tumor was HER2+, it was really, really NOT good news. It meant that the tumor was aggressive and fast growing. I read somewhere that Herceptin reduces the rate of recurrence by 50%!!! One of my chemo nurses when she found out that I was diagnosed, she asked me if I was HER2 pos, and she was actually glad that I was because I can receive Herceptin.

Please don't wait till November (? is that when your open enrollment is?) to start treatment - that's a whole 6 months.

Dx 8/27/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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May 13, 2012 05:56PM - edited May 13, 2012 06:00PM by AlaskaAngel

Hi Blythers,

Until trastuzumab (Herceptin) was used, HER2 positive used to be one of the worse types of breast cancer to have. Those who not only are HER2 positive but also hormone receptor negative (like Sassa) are helped by Herceptin but not endocrine therapy, so they have a more dangerous form of breast cancer than those who are ER/PR positive. Sassa is right about her form of the cancer.

Your question is a very good one, Blythers.  Whether or not a therapy is very useful, many people tend to think the more toxic (awful) a treatment is, the more effective it is, which is not accurate, but it does make them feel like and believe they are at least using something to try to beat the disease. There is nothing wrong with that, other than it is important to understand that chemotherapy in general is given to a huge number of people with early stage breast cancer, most of whom get no benefit from it and many of whom have side effects from it.

You will hear some say that when Herceptin is given with chemo, it makes the chemo more effective. However, that is not yet certain. The reason is not yet certain is because the trials that were done with chemo and Herceptin did not include stage I breast cancer patients, and also did not test whether or not Herceptin used alone was as effective, more effective, or less effective than chemo plus Herceptin.

So it is more accurate to say instead that chemo plus Herceptin works better than chemo used alone.

Initially, it was easier to get trastuzumab without chemo, but once the trial results were used for approval by the government based on the use of chemo plus trastuzumab, insurance companies tended to go along with that. 

Again, those who are triple negative have good reason to focus on the use of chemotherapy as part of the treatment.  The stardard recommendation even for those who are not triple negative is for chemo plus trastuzumab.

I did chemotherapy myself because my oncologist was not honest with me about the value of it for triple positive patients. At the time I did treatment, trastuzumab had not yet been approved and was still in trials.  I asked specifically about participating in any clinical trials, and he failed to tell me that there was a trial for trastuzumab that I would have been eligible to participate in. At the time I did treatment, the only treatments available to me were radiation, Adriamycin/Cytoxan/5-FU, and tamoxifen. The aromatase inhibitors were not yet available to those like me who did not have mets. So I did rads, CAFx6, and some tamoxifen.

At present, there is a clinical trial being done that uses trastuzumab alone for bc patients over age 70. Hopefully that will provide better information about the use of trastuzumab alone.

You should not postpone treatment very long. If the unknowns of using trastuzumab alone for early stage triple positive bc are preferable to you, you should know that others have refused chemo and have been prescribed trastuzumab.

A.A.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/3/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/12/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/10/2002 Breast Hormonal Therapy 11/15/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 13, 2012 06:00PM BonnieBee wrote:

Didd you have an oncotype? I had a some what similiar daignosis( not Her postive) and my onco recommend CMF..chemo.

Its not the worst thing and I get a 5% reduction of metastatic disease. Worth it to me..and my two babies!

Dx 1/3/2012, IDC, 1cm, Stage I, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 1/19/2012 Lumpectomy: Left Surgery 2/28/2012 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/1/2012 CMF Surgery 7/31/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 8/4/2012
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May 16, 2012 01:44PM Sassa wrote:

I would like to point out that my post about HER2+ cancer spreading through the blood is entirely about the HER2+ component of breast cancer.  DO NOT let a naysayer tell you I am speaking from being ER/PR negative.  While that may have factored into the aggressiveness of my BC, it was the HER2+ component which caused the worry about metastasizing even though I was node negative.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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May 16, 2012 01:47PM Sassa wrote:

BonnieBee,

The oncotype test is not done on HER2+ BC as the HER2+ component is known to raise the oncotype score into the chemo needed range.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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May 16, 2012 06:10PM BonnieBee wrote:

THanks for the info girls! Learning more every day.

Dx 1/3/2012, IDC, 1cm, Stage I, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 1/19/2012 Lumpectomy: Left Surgery 2/28/2012 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/1/2012 CMF Surgery 7/31/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 8/4/2012
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Jul 22, 2012 01:41PM westiemommy wrote:

Hi there,

I'm going to be getting Herceptin alone with no chemo.  FDA has approved this monotherapy for early stage HER2 posiitive BC and my Onc assured me my insurance wouldn't balk.  He said as long as you acknowledge that we have looked into each other's eyes and you understand that this is not the typical protocol, I will agree to give it to you alone every three weeks for 17 treatments.  I have a history of kidney disease and neuralgia from recurring shingles already at age 39, so I figured chemo might finish me off right quick.   I'm pretty sure you can do just the Herceptin/Tamoxifen tx regimen if you demand it.  I know my body and what it can and can't handle and my Onc seems to respect that. 

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Jul 23, 2012 11:56AM - edited Jul 23, 2012 11:58AM by AlaskaAngel

Hi westiemommy,

I'm glad you have given consideration to your options, and have found an onc who supports your decision.

It also allows you one MORE option for the future, in that those who choose chemotherapy the first time around have less reason to chose the same chemo again if they recur.

I hope you will update from time to time, in support of others who may be faced with a similar basis for their choice.

A.A.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/3/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/12/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/10/2002 Breast Hormonal Therapy 11/15/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 23, 2012 10:39PM Hindsfeet wrote:

wrestiemommy, yes, for those especially who are early stage I think it's a good choice. If you are stage 1, 75% likely the surgery took care of your cancer. We take the Herceptin for possible micro cells that might have escaped. Do keep us posted. I feel a lone and unliked here for my choice. It would be good to have ladies like you in this camp to support others who choose herceptin only or who struggle due to it's side effects.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Mar 22, 2017 04:47AM Robin1234 wrote:

is anyone still on this thread I'm wanted to see.how everyone is doing on herceptin only. I'm her2 positive with a 2.5mm and 1.5mm and I'm not want to do chemo and herceptin. My doctor did offer me herceptin only.

Dx 11/7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR- Dx 12/27/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (FISH) Surgery 12/27/2016 Mastectomy: Left, Right; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Mar 22, 2017 05:03AM KB870 wrote:

I did Taxol and Herceptin BUT my MO said that if I found the Taxol too hard on first treatment she would continue with Herceptin only for the rest of the treatments. Not sure but I think it may have to do with standard of care here.

Diagnosed at 62 when I was feeling great! Active swimmer, erger and more. Surgery 9/19/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/31/2016 Lymph node removal: Sentinel Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Chemotherapy 11/29/2016 Taxol (paclitaxel) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Mar 22, 2017 08:34AM Robin1234 wrote:

Hi KB870 how are you doing with chemo and herceptin?

Dx 11/7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR- Dx 12/27/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (FISH) Surgery 12/27/2016 Mastectomy: Left, Right; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Mar 22, 2017 10:39AM NotVeryBrave wrote:

I just wanted to chime in with my treatment. I was prescribed TCHP x 6 rounds for HER2 positive IDC. Because of some concerning SE's, I was seriously considering quitting after the 3rd round. One of the options that I was given was to continue with only the Herceptin and Perjeta - so that is sometimes done.

In the end, I opted to continue with the treatment plan and only substituted Neupogen for the Neulasta I had been receiving. I figured I would be very upset with myself if the cancer came back and I had not done what was recommended (even though there's no guarantees on anything). I have one round left now.

Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 22, 2017 11:20AM Alert2017 wrote:

I have invasive papillary (VERY rare and slow growing ) and Triple + , unheard of to have Her2+ with papillary. I'm getting taxol + heceptin , 12 weekly treatments, then radiation, 6 weeks, and herceptin alone to complete a full year. Of course no one wants chemo but from my reading and what i was told at major cancer centers, that is the best way to ensure you are handling the HER2+. My cancer is slow enough that I could have just had radiation but HER2+ trumps all. Taxol + Herceptin is "chemo light" compared to some of the other combinations. I was told they would monitor and work w/ me if I had really bad reaction to taxol. I have had 2 treatments and my reaction has been to the pre-med steroids- reflux and queasy, all being managed by a variety of medications. I happy to have these options available to me. Personally, I would do the chemo and herceptin and see how it works.

Dx 12/16/2016, IDC: Papillary, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/11/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
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Mar 22, 2017 11:25AM KB870 wrote:

I had very few problems with the Taxol Herceptin regimen. Side effects were minor and I kept up my swimming group 3x per week, just lowered the drills a bit. Lost a lot of my hair but didn't really worry me, small price to pay. I did get tired and went to bed maybe an hour earlier at night. SOmetimes I felt tired and just rested for 5- 10 mins. The main thing was on day 2-3 I would get a crash after the steroids wore off but I was prepared for it. At the end a few of my nails look bruised but OK and healing well. I'm now 4 weeks PFC and feeling great.

Check out the weekly Taxol/Herceptin group for more info.

BTW I'm an old broad LOL 62 at diagnosis but my MO said being fit helped a lot.

Diagnosed at 62 when I was feeling great! Active swimmer, erger and more. Surgery 9/19/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/31/2016 Lymph node removal: Sentinel Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Chemotherapy 11/29/2016 Taxol (paclitaxel) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Mar 22, 2017 11:46AM Reikion wrote:

I had asked for herceptin only from my onc at Kaiser since I was Stage 1 and was refused. Glad to hear Kaiser is allowing this for some patients.

I did not want to do the TCH regimen recommended, so I was glad to be offered a clinical trial that I got approved for through secondary insurance. The randomized trial offered Taxol + Herceptin (25% of participants) and TDM1(Kadcyla) to the other 75%. TDM1 is Herceptin with 1 molecule of Emtanzine (Chemo). I got assigned to TDM1, have done well on it and am approaching the end of my 1 year on the drug.

I wish you the best and hope that you find an oncologist that you feel comfortable with --- it makes all the difference.


Dx 12/10/2015, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (FISH) Surgery 2/22/2016 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Targeted Therapy 5/20/2016 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/16/2016 Whole-breast: Breast
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Apr 26, 2017 01:53PM Drained6513 wrote:

I am in Canada and they will not give you Herceptin alone.  Then my Oncologist said if I want to go down to the States and pay for just Herceptin?  Of course I cannot.  I've done my 12 Taxols, but the toll it took on me.  Loss of hair, my skin looks like an 80 year old man's.  I've gained 20 lbs from the steroids etc.  It's only been 5 weeks since my last taxol, but it makes you anxious to see yourself like this, and how long is it going to take me to look like myself again?  And will I ever?  So, having the choice for the Herceptin alone, would be nice to have as an option.  Cause to do nothing is not an option, thus the Taxol..

DX: Stage1A Centinode 0/3 negative. With Pagets. Left side Mastectomy Nov. 4/16 with reconstruction. Suffered infection and expander removed Dec. 2016. Currently on Weekly Taxol x12 with Herceptin every 3 weeks for 17 weeks. HER+

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