Testing, treatment, side effects, and more.
Posted on: Jan 31, 2011 04:30AM - edited Dec 10, 2012 05:55AM by TonLee
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
Posts 30691 - 30720 (36,029 total)
May 24, 2017 03:54AM ElaineTherese wrote:
Yes, HapB, chemo is typically recommended for triple positive women because Herceptin (the game changer for HER2+ cancer) is typically given with a taxane chemo, such as Taxotere or Taxol.
That said, the treatment for triple positive does vary somewhat, depending on the size of your lump. Women who have lumps smaller than one centimeter are more likely to get "chemo lite" or to convince their doctors to give them more experimental regimens, like Herceptin only.
Triple positive BC patients who have lumps 2 cm or bigger often get Perjeta during neoadjuvant (before surgery) chemo, as recommended by U.S. national guidelines. However, there are many on this thread who managed to add Perjeta to their post-surgery regimen.
My lump was big (5 cm +), so I did do neoadjuvant chemo to see if we could shrink it down so that I'd have more surgical options. Since all the active cancer disappeared, I was able to opt for a lumpectomy.
Anyone who opts for a lumpectomy over a mastectomy is automatically considered a candidate for radiation so as to prevent local recurrence. Also, all BC patients whose cancer was fed by estrogen will be advised to do hormonal therapy like Tamoxifen or aromatase inhibitors.
So, yes, triple positive BC patients often do surgery, radiation, chemo, targeted therapy, and hormonal therapy. It's a marathon, not a sprint. On the other hand, triple positive BC patients have more options for treatment than triple negative patients or those who are ER+/PR+/HER2-(the most common form of breast cancer). It is what it is. ((Hugs))
May 24, 2017 08:37AM deni1661 wrote:
Hi Hapb - congrats on the great path results. I can relate to your angst regarding the need for chemo, rad, and HP. It's especially hard to understand the need when the cancer is not present. I was fortunate to participate in a neoadjuvant clinical trial without chemo (HP only 6 months before surgery and 6 months post). Tumors were not visible 3 months into treatment! I was expecting to have a lumpectomy because if the tumors weren't visible why would they need to remove the whole breast, right? My MO and BS said that HER2 triple is so aggressive that even 1 cancer cell left behind can turn into a recurrence. My MO said treating HER2 with the current standard of care protocol provides the best possible survival rates and lowers the chance of recurrence. I am so glad my doctors insisted on the mastectomy because they did find a few single cancer cells left behind. They would not have found those cells if I had the lumpectomy. I have since learned to trust whatever my MO recommends.
I'm not sure if you would qualify for the HP no chemo trial since you already had surgery. You might want to discuss the option with your MO to get his/her opinion on the no chemo approach.The clinical trial info is listed below. My MO has had several BC patients outside the trial that chose not to have chemo and did well with HP only. I think the outcome depends on the individual as our bodies are all different and responses are also different. As Elaine mentioned in her post, treatment options for triple positive may vary and that can add confusion when determining which is best for you.
I think it is very wise that you are questioning your treatment options. I did the same when first diagnosed which prompted me to get a second opinion. That second opinion led me to my MO and the clinical trial. I am grateful for my results and credit my doctors and the cancer center's treatment philosophy.
Good luck with your decision. Feel free to PM me if you want more info 😊
May 24, 2017 01:00PM ElaineTherese wrote:
While breast cancer often spreads to the nodes first, the absence of cancer in the nodes does not mean that it hasn't entered the lymphatic system or bloodstream. There are plenty of node-negative BC patients on this site who went on to develop Stage IV breast cancer. That said, I do think that deni1661 is part of an exciting "no chemo" study. It doesn't hurt to raise the "no chemo" question with your medical team. In the future, maybe more triple positive women will be able to take deni1661's path. ((Hugs))
May 25, 2017 02:33AM ElaineTherese wrote:
There are a number of online calculators that might help you decide. See, for example,
Be sure to ask your medical oncologist (MO) to calculate the risks of going without chemo as well. You could also ask your MO about Herceptin alone or "chemo lite," (Taxol + Herceptin). Just remember that before Herceptin, only 40% of HER2+ BC patients were still alive after 5 years. Today, though, HER2+ BC patients have survival rates similar to other BC patients. Over 95% of Stage 1 patients are still alive after 5 years. ((Hugs)) It sounds like you've been through a lot in recent years, but you might still have 20+ good years ahead of you.
I thought my five months of chemo would never end, but they did. There are many Stage IV ladies on this board who are living active and fulfilling lives, but I would rather not join them. Their treatments really will never end; it is about stabilizing their cancer, not (potentially) curing it. Best wishes in making decisions!
May 25, 2017 07:42AM kae_md99 wrote:
hapb, pls ask your onco about getting HErceptin alone maybe but if he can add perjeta to it amd convince the insurance,it might be better....my humble opinion..
May 25, 2017 08:33AM moodyblues wrote:
Hapb So sorry that you are feeling this way. I felt the same way as you (didn't want to do anything after MX) and before I could ask my ONCO, he gave me stats that weren't too promising. He said the HER2 was ugly and it wouldn't be good for me to do nothing. I thought if I ate right, exercised, stayed away from colorings and preservatives and said my prayers, I could beat it. I am starting Chemo the 31st. TCH. It really sucks but, I am going to fight it tooth and nail
May 25, 2017 11:02AM - edited May 25, 2017 11:02AM by coachvicky
Thank you for such an honest posting that I believe most of us have asked. To do or not to do.
My Oncologist frankly told me without chemo when the cancer returned (and it would), it would be lethal. I had multiple cancers in both breasts.
Couple of things I would ask you to consider:
1. How fatigued are you? My fatigue was due to chemo induced anemia. Once I got an iron infusion, my decision making about lots of things became clearer and easier. I offer this because I believe many medical people do not consider how fatigue and anemia can affect our decision making.
2. Would you consider talking with a mental health professional before making your final decision? I would look for someone who has dealt with breast cancer patients as opposed to just anyone.
My prayers are with you as you decide.
May 25, 2017 11:15AM ElaineTherese wrote:
Well, I don't know if "they" call it chemo lite; I call it that because it is a less aggressive, less severe chemo regimen that is often prescribed for women who have small cancer lesions.
Taxol is Taxotere's gentler cousin. It (supposedly) produces fewer side effects than Taxotere + Carboplatin, though I did get mild diarrhea on it. I initially had Adriamycin + Cytoxin, which hit me like a truck. Its impact on the immune system is such that my oncologist had me do Neulasta shots after each infusion. (Neulasta helps your white blood cells recover from chemo.) In contrast, Neulasta typically isn't given after Taxol, though some women do suffer from low counts after Taxol infusions.
I felt mentally alert on Taxol whereas I suffered more from chemo brain while on AC. I had more energy, and performed better at the office.That isn't to say that Taxol is easy for everyone or that it is side-effect free. Like Taxotere, it can contribute to neuropathy in your extremities. To this day, I have mild neuropathy in my fingertips (it's difficult to button small buttons). Unlike Taxotere, I've never heard of anyone suffering permanent hair loss while on Taxol.
My MO told me that more women tolerate Taxol than Taxotere + Carboplatin, and that's why she likes to prescribe it. She'd rather have her patients finish their treatment if at all possible.
May 25, 2017 11:40AM moodyblues wrote:
Elainethere Thanks for posting the calculator link!
May 25, 2017 02:14PM Upheld wrote:
I went to Chapel Hill yesterday where the Lineberger Breast Center is located. This hospitals is renowned for breast cancer treatment. I say that so that you will know where the following information came from. I met with a surgeon, a radiation oncologist, and a medical oncologist. They had all reviewed my case, including the original pathology slides and the actual test themselves, not just the reports. They then had a plan before I met with each of them individually. It was a wonderful experience. I'd like to share some things that I learned in the hopes that it may help someone else.
I see above a lot of conversation about projeta. The plan for me was to be on Herceptin alone for a total of a year. That would include the time that I receive it during the next four months while I get my chemo. The Perjeta is a drug that has, according to the medical board joy there, revolutionized the treatment outcomes for patients with triple positive cancers. In fact, there will be a paper presented at the ASCO (American Society of Clinical Oncologists) conference covering all of the trials and results as well as recommendations for this drug. He advised that I should add the Prejeta to the Herceptin and take both for one year.
I asked him about whether or not to take the Zofran prophylactically or just wait until I had symptoms. He told me to take it immediately after I get home, every eight hours. He said that it won't hurt me, except for constipation, and that psychologically, it's better to head off the nausea then go through it one time and then fear having it at every treatment.
He said that patients on my regimen, TCHP, typically get diarrhea or constipation. For the diarrhea, he said to take two tablets at the first episode, not one. . He said to take one tablet after each loose stool until the diarrhea abate's. So a positive from the Zofran is that the constipation side effect may be helped with the diarrhea.
If constipation is an issue, he says that Power Pudding is the key. There are recipes you can find for it on Google. You mix up a batch and put it in the refrigerator. Every morning, you take 2 tablespoons. He and his nurse swear by it.
I discussed icing with him with him during Taxetere. The clinical name for neuropathy is CIPN ( chemo-induced peripheral neuropathy) you can use that acronym and impress your doc! Anyway, if you Google it you will find clinical information and trials that have been completed regarding icing and Taxotere. I asked him about taking vitamin B6 and he said that there has not been any evidence showing that it helps to prevent or improve neuropathy. He said that he does encourage his patients to ice their feet and hands as there are no side effects and if it is effective, it would be well worth it.
The radiation oncologist felt strongly that any breast reconstruction or work after the mastectomy should be put off until after radiation is completed. She said the goal is for a cure and you do not want anything making it difficult for the radiation to be effective. On the other hand, radiated skin is harder for a plastic surgeon to work with. Personal choice.
When I asked what the 3 most important things to do during chemo, they said to drink a minimum of 100 oz of water a day, keep moving, and make sure you are getting your rest. They talked about exercising in some way every day. That it also really makes a difference with neuropathy.
They also stressed speaking up with any side effects or any issues. I have a hard time asking for help or bothering anyone, but this is not the time to be quiet!
The rest of the info I got pertained specifically to my case. I hope this information will help someone else!
May 25, 2017 02:26PM - edited May 25, 2017 02:30PM by WIhockeymom
Last week I had an ECHO... It was ordered as routine while going through Chemo/Herceptin. It seems my heart does not handle these drugs well. I was diagnosed with cardiotoxicity/Congestive Heart Failure. Pretty scary for a 40 year old woman who was "healthy" up until my lump was found. I've been put on some meds to help my heart heal and pulled off Herceptin, most likely permanently as the damage to my heart was quite severe. I am now worried about the effect not finishing the Herceptin will have on my overall prognosis. I received about 1/3 of the total dose of Herceptin. Does the risk of not finishing the Herceptin outweigh the risk of the continued damage to my heart? Ugh! So frustrated!
May 25, 2017 02:32PM ElaineTherese wrote:
WIhockeymom, I'm sorry to hear about your heart damage. My oncologist would agree with the decision to stop the Herceptin. She has always said, "You only have one heart!" You had a small tumor, were node negative, and made it through chemo. It looks like you're on Tamoxifen. I wouldn't sweat it, though you might ask about Perjeta as a possible substitute for Herceptin. ((Hugs)) I hope your heart recovers soon.
May 25, 2017 02:54PM kae_md99 wrote:
i,too would like to continue Perjeta along with herceptin after surgery but Perjeta is not yet FDA approved in this setting so i was cautioned by my MO that it might get denied by insurance. but there has been some that have gotten it adjuvantlygoodluck and its good you found a good medical team!
May 25, 2017 03:24PM Soxfan75 wrote:
Wlhockeymom - After my surgery, my onc gave me two options for treatment: AC-TH and TCH. She also gave me the study that compared the two (along with ACT) to look over. I read and re-read that study and realized that the heart damage from the Adriamycin and Herceptin combo was the big concern. Some of the women weren't able to finish the year of Herceptin because their LVEF was too low. Not getting the Herceptin since it was so important to Her2+ cancer scared me into choosing the TCH option even though the disease free survival rate was 3% lower. My onc added Perjeta to the TCH regimen and she's hoping to convince the insurance company to keep me on that for a full year along with Herceptin.
I would definitely ask about Perjeta as a substitute for Herceptin, but I recently read there might be some heart problems associated with that as well. I believe the heart damage caused by Herceptin is reversible, so maybe if and when your heart recovers, maybe they could resume the Herceptin? Not sure if that's an option or not, but could be worth looking into.
May 25, 2017 03:33PM - edited May 25, 2017 03:36PM by ElaineTherese
I had dose dense AC (4 infusions, every two weeks), then 12 Taxols (weekly) + Herceptin + 4 doses of Perjeta.
Re: the calculator -- if you want to compare outcomes with and without treatment, go to the tab labeled breast cancer tools and then click on therapy. Then fill out your info again plus the treatment you plan to do and click update graph.
May 25, 2017 05:42PM - edited May 25, 2017 07:09PM by sportsmom16
Hi Everyone-- surgery over, started Herceptin and waiting on reconstruction-- thought I would be happy but am finding myself extremely depressed. Got a prescription for Citalapram (Celexa) - been on it for 2 weeks and some of the anxiety is gone and I feel better. I understand it takes a couple more weeks to really kick in -
Checked with my oncologist and he said it was ok to take with the Tamoxifen-problem is I did some research and found several articles that says it may limit the effectiveness of the Tamoxifen?? Many, many of the anti-depressants do.
So what do I do -- Anyone else in this boat-- what did other docs say? Thanks for any light you can shed on this?
May 25, 2017 05:47PM ElaineTherese wrote:
I'm on Celexa, too, but I'm on an AI (Aromasin). The AIs don't interact as much with antidepressants as Tamoxifen. Celexa is an SSRI like Prozac, but each SSRI is slightly different. You might want to call your pharmacist to discuss this issue.
May 25, 2017 07:53PM WIhockeymom wrote:
thanks for the input everyone....my LVEF is 28% right now...sounds like they will see how quickly my heart rebounds before ruling out more Herceptin completely...I just switched Oncologists and she's frustrated that they didn't do an ECHO between the Adriamycin and Herceptin...to see which (probably both) caused the damage. I will be asking about Perjeta...
May 25, 2017 09:46PM Taco1946 wrote:
Before cancer I didn't think about what a psychological toll cancer takes on folks. Decisions every time one turns around. I appreciate seeing the longevity chart - hadn't found one before. For now, I plan to stick with my herceptin and anastrozole. Even though I had "chemo lite" I stopped the taxol after 8 of the 12 sessions because my neuropathy got so bad. I seem to be having no SE from the herceptin but have joint pain from the anastrozole. However, 4 weeks in, the SE are definitely getting better and I am making myself play golf, walk and go to exercise class. I was able to have brachytherapy which I think has helped my recovery time too. Just had my 71 birthday and celebrated our 50th wedding anniversary so I have had a good life. DH has promised that when I say enough treatment, he will honor that. We watched his brother die from the "cure" rather than from his cancer and I won't do that. Hard choices for all of us. I do know when I was struggling with stopping the taxol someone on one of these boards told me to make the best decision for me and then not second guess it. Just move on. Even if moving on is getting a second opinion.
May 26, 2017 06:35AM ElaineTherese wrote:
Definitely discuss the risks/rewards of chemo, targeted therapy, and hormonal therapy with your oncologist. The cancermath calculator is about general probabilities, not about you in particular. Your history of cancer and cancer treatments and any other health issues may make your case different. For example, someone with heart issues probably shouldn't get Adriamycin and maybe Herceptin. Hope your oncologist can provide you with some answers today.