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Topic: Herceptin only?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jun 4, 2015 08:36PM

Cheesequake wrote:

I met with my surgeon today to discuss placing a port in advance of chemo. We talked about all the specifics, the procedure itself, risks, etc, and I was doing fine. Then he said, "so what's going on in your head right now?" and the floodgates just opened. I started bawling about how conflicted I am about chemo - the potentially permanent or long lasting side effects, the relatively low improvement numbers, the lack of ability to monitor effectiveness, the likely destruction of my sex life - and volunteering for this all when I feel absolutely, totally fine. I'm literally vacillating from one hour to the next between "it would be absolutely foolish not to try every conventional treatment in the arsenal" and "I am NOT signing up for that shit!!" I cried all the way home and then some more, my eyes are nearly swollen shut. I just got back from having a chest/abdomen/pelvis CT scan (even though I'm not supposed to have radiation unless absolutely necessary because I have Li-Fraumeni Syndrome, which increases my risk for new radiation induced cancers) so I've decided not to even make any irreversible decisions until I have the results and know whether I'm Stage IV.

All of that was just to get it off my chest, sorry for the rant. The point of this thread is to ask, since I am utterly terrified of chemo:

Is there any effectiveness to just doing Herceptin? Or must it be done in conjunction with chemo?

Thanks.

I'm age 42, married, no kids. I have Li-Fraumeni Syndrome, a genetic disorder that gives women a nearly 100% lifetime risk of several types of cancer and makes radiation-induced cancers more likely. Dx 3/4/2015, IDC, Left, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 4/27/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 7/17/2015 Herceptin (trastuzumab) Chemotherapy 7/17/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 11, 2019 09:56AM BatyaD wrote:

Thank you WC3.

So if we have those receptors, don't they play a good part in healthy cells?

Why would we kill off all those receptors in healthy cells with Herceptin? If they got all the cancer out with the lumpectomy, and it hasn't spread to the lymph nodes, aren't I damaging other non-cancerous cells with Herceptin? And the Taxol.

I'm trying to make sense out of this and worrying about future side effects. I understand HER2+ is aggressive, so I will do the Herceptin treatment, but this whole kill-it-all-off-even-if-there's-no-evidence-of-it approach worries me.

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Feb 11, 2019 10:18AM SpecialK wrote:

batya - the problem is that there is no way to know whether they got all of the cancer out with your lumpectomy, you can't assume they did. Cancer contained in the breast doesn't kill anyone, it is breast cancer in locations outside the breast or axilla that make a patient metastatic, typically bones, lungs, liver or brain - and cancer cells can spread outside the breast by the lymphatic system or the vascular system, clear nodes are no guarantee. Systemic therapy such as chemo, targeted therapies like Hercpetin or Perjeta for Her2+ patients, or anti-hormonals are to target those cells that have escaped the breast unseen. Yes, there are Her2 receptors on healthy cells, this is one reason you will have an echocardiogram or MUGA scan of the heart during treatment to help determine if you are tolerating treatment. Having Herceptin alone doesn't lessen the possibility that your healthy Her2 cells won't be affected. Previous clinical trials on these drugs have been done to help establish the balance between efficacy in cancer treatment and the patient's ongoing overall health. I know it is scary, but for me at least, potentially untreated Her2+ cancer was even more scary.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Feb 11, 2019 10:33AM BatyaD wrote:

Thank you SpecialK.

The more I learn the calmer I am about all this, so I appreciate all the information people are sharing here.

What you said makes more sense out of it. I wish the doctors would explain it this well!!

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Feb 11, 2019 11:54AM SpecialK wrote:

batya - you're welcome - I think sometimes it makes more sense coming from those of us who have lived it - docs deal with this every day but not many of them have experienced the personal decision making rubric themselves. They believe in what they are recommending but their orientation toward it is different from that of the patient! Unfortunately, there are no choices in this process with 100% guarantees, and our own risk tolerance has to be factored into any decisions we make. We each have to proceed with what works for us as individuals - a combination of the recommendations from our medical professionals, and what we are willing to undertake, with all of the attendant possibilities. I will say I was extensively monitored throughout systemic treatment with cardiac imaging, blood work, physical exam, and conversation with my medical oncologist. That was what I needed and wanted and I feel fortunate to have the oncologist I do, he was a perfect fit for me. I think this is an important point from the outset - many patients are focused on starting treatment and don't ask about how they will be monitored during that treatment, or afterward. I think it is vital to have an oncologist who looks at you with a level of scrutiny that is comfortable for you, whether you want a hands-off approach with not so many appointments, or you would like a more involved doc who images and does blood work, and fully explains the reasons he/she is doing so. Wishing you the best!

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Feb 12, 2019 11:32AM BatyaD wrote:

Thank you SpecialK. You should write a book! Seriously.

Today I decided to go with the Medical Oncologist who actually explained the Taxol+Herceptin rationale to me (heterogeneity of cancer cell mutations) and who most patiently and respectfully answered all my questions. She's a tough lady, which I adore as I'm kind of a wuss. But now I have to call the other Oncologist and tell him no. (He's the granddaddy guru of Oncology in South Florida, or further, but he's 80 and they already know who's going to replace him when he retires and though he's still sharp and on top of things, I doubt he'll be there to treat me through my first 5 years---maybe not even my first year---and knowing I'll have to change oncologists in the middle of tx is not reassuring.)

Tomorrow I see the radiologist and we decide what type of radiation I'm getting which will include a discussion about port(s). And maybe find out more of my timeline--especially when the Taxol/Herceptin treatment might start.





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Feb 12, 2019 11:51AM - edited Feb 12, 2019 11:53AM by SpecialK

batya - sometimes I feel like I could write a book, lol!

Also, high five from another FL peep! I’m over in Tampa but my husband was born and raised in Miami

The order of things with adjuvant chemo/targeted therapy would be that you would receive the Taxol and Herceptin weekly (prob for 12 weeks), then a short wait period to recover - usually 2-4 weeks depending on how you're feeling, before starting rads. Simultaneously with rads you would move to receiving Herceptin every three weeks - which is a larger dose, but less often than when you were getting it with the Taxol. If you are ER+ you would start anti-hormonals in there somewhere, but depending on the philosophy of your oncologist it might be when rads is done, with another short recovery period afterward. Some docs like to space therapies out so you can more accurately ascribe side effects to the correct thing and mediate accordingly.

Your medical oncologist is a longer term relationship than breast surgeon or rads onc. You are wise to proceed with the doc who patiently explained and is likely to be with you for the long haul.

The port situation is a personal decision - you can go without if your veins are good and easily accessed, but a solid year of treatment is a slog - there is something to be said for ease of access. Just know it is not mandatory for the type of treatment you're getting. Ports are putin by a variety of docs - my breast surgeon put mine in during mastectomy, but vascular surgeons and interventional radiologists also do them. Install is an outpatient procedure.

Please ask me any specific questions you think I may be able to answer - either here or by PM.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Feb 13, 2019 12:55AM WC3 wrote:

BatyaD:

Apologies, for some reason I thought that by "Herceptin only" you were talking about Herceptin without Perjeta (which is done sometimes). I didn't realize you meant Herceptin without chemotherapy.

The reason is, it doesn't work nearly a well. Cancer cells can mutate quickly and in a tumor, often times not all of the cells are the same. For example, you might have triple positive cancer, meaning you cancer cells have estrogen receptors, progesterone receptors, and too many HER2 receptors, but there may be some cancer cells in there that lack hormone receptors or lack an abnormal number of HER2 receptors, or have mutated HER2 receptors that are Herceptin resistant, or the cancer grows faster than the Herceptin can keep up with. So the chemotherapy is used along with the Herceptin to help eradicate the cancer cells because it can attack cells that are resistant to Herceptin.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)

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