TRIPLE POSITIVE GROUP

HapB,

There are a number of online calculators that might help you decide. See, for example,

http://www.lifemath.net/cancer/breastcancer/outcome/index.ph

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!

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

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.

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!

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.

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.

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?

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...

HapB,

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.

My nephew is an actuary (he's a lawyer that works with longevity). I asked him about life expectancy. He said he did not believe the calculations considered multiple types of breast cancer which many women have.

I am having enough freckin' worry that with chemo I have there is only an 85% chance of living cancer free. In our business when I report data back to a client I use a 95% confidence band!

I may live to regret chemo but as for now I am not. However, my SEs were not that bad.

A friend asked me what chemo was like. I told her that I once read when someone goes to jail they expect to be raped. No one, however, expects to be gang raped the first day of imprisonment. Well ... that is chemo to me. It was as bad as I thought it would be but still worse than I imagined. It was not so much the physical SEs but the unknown and the mental challenges such as ... Is this working? Is this the right chemo mixture? ... What if it doesn't work?

I long for the morning when I awake and I don't think about this.

Coach Vicky

SpecialK,i tried the UK PREDICT, wow, the prognosis was the same as what my MO told me from the beginning when i first saw her.thanks for sharing.

hap - not trying to convince you one way or the other - just FYI, none of the choices on lifemath include Herceptin, they only include chemo regimen combinations without the targeted therapies that are added to chemo for Her2+. The choices on Predict are for 1st, 2nd, or 3rd generation regimens. The combos commonly used for triple positives AC-TH(P) and TCH(P) are 3rd generation, and Predict includes the addition of Herceptin, calculating survival with its addition and without

hap - I don't think you are doing it wrong with either calculator, and it is important to know that the advent of Taxol and Herceptin for smaller Her2+ tumors is relatively recent. It has shown good results and is thought to be more easily tolerated. If it is any comfort, my dad did two separate rounds of Taxol at the age of 82 and he did great. As long as your cardiac situation is monitored and your LVEF (ejection fraction) stays where it is supposed to, Herceptin on its own is usually very well tolerated. A runny nose and some minor achiness is all most experience when continuing Herceptin after the chemo portion is complete. You might ask about Canadian protocol rads, it is a shorter duration - 5 days a week for 3 weeks. I have a friend who had a ER+/PR+/Her2- tumor at 69, had lumpectomy and this type of rads and did fantastic. She worked full time through the whole thing. Only you can decide whether adjuvant systemic therapy is the right thing to do for your individual situation, and whether the difference - or benefit - is small enough to forego further treatment. I wanted to say that because I don't want you to think my examples in this post are meant to coerce you - I just wanted to reassure you that this treatment doesn't necessarily mean that you will be miserable.

jeaniraye - on your profile you have to click "public" to make the info show up after you put it in - maybe that is the problem? Glad you have come this far in your treatment - you will start to feel better the longer out you are from chemo and rads. As far as ovary removal - removing them does not mean you can forego anti-hormonal medication as your body makes estrogen in other places. It changes the type of drugs offered to include aromatase inhibitors - and they can impact bone. I would think your MO is referencing this in his advice - at your age being without most of your estrogen could impact your bone and heart health long term. Tamoxifen allows estrogen to circulate and do the good things it does - but it blocks the estrogen receptors on the breast cells as its form of protection.

Hi Jeaniraye, I am Canadian, as you are. There are drugs offered in the US that aren't covered here. The major one is Perjeta; it is covered for stage 4. I did meet a woman ftom out west about your age that fought for use of Perjeta in her treatment; her oncologist okayed the prescription, but she had to pay for it off label and have it infused at a private clinic. If you're done radiation and chemo, you would likely have a harder time getting your MO to agree to Perjeta (did you get a complete response from chemo?). As for oophorectomy, doctors don't like to suggest it for women under 45, especially under 40. The ovaries do a lot for us that I didn't even know. I had the surgery, but I am 48 and was likely 2 or 3 years from menopause occurring naturally. I'm not thrilled with the possible risks, but it felt right for me.

hap - in addition to my own breast cancer and many skin cancers, as well as a rare but benign tumor that was removed from my leg, my brother had stage IV bile duct cancer, and my dad stage IV lung cancer. I have had a number of close friends with breast cancer - both before and after mine - and two of them were single women, one 35 and one 69. I went with both to their surgeries and treatment since they did not have family locally. I have also had several friends with other types of cancer that I have accompanied to consults and treatment also. Co-morbidity in the sense of not tolerating chemo is generally considered to be heart disease, liver disease, kidney disease, or something that makes tolerating the chemo drugs dangerous to the patient. Your oncologist will be able to explain whether your previous cancer is something that would preclude being able to receive Taxol. A single agent chemo regimen is usually considerably easier to tolerate than a multi-drug regimen, and your MO can reduce the dose, or you can certainly stop, if you find you are not able to handle any side effects. From what I have witnessed, chemo side effects are generally not permanent and the time it takes to feel pretty normal is about as long as the time period you were receiving the drug. I understand the concern about being debilitated, we all share it, and it is a legitimate fear Interestingly, I have found in both my personal experience, and here on BCO, age is less of a factor in who does well with chemo - you would think youth and strength would prevail but it does not guarantee an easier ride. I had a lady that sat next to me at chemo who had fallen and broken her hip leaving the surgery center after her lumpectomy. She recovered, then started chemo and did beautifully, she was in her 70's. You just never know! Have you had the opportunity to have a frank discussion with your oncologist about your concerns?