TRIPLE POSITIVE GROUP

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?

will removal of ovaries for premenopausal women reduce the risk of recurrence for er positive who will be on lupron and AI? or is lupron and AI enough?

specialK,i am 44 years old and i will be taking AI and i have already started Lupron. thanks

Hap - our diagnosis look about the same although I haven't had cancer previously. Had a intercerebral bleed 10 years ago and my recovery from that has left me grateful. I did 8 rounds of taxol but the neuropathy got bad and I quit. (I too had the feeling that I should finish it for my family but my MO said I had had enough to make if work.) Side effects left me within a few weeks. Herceptin has been fine. I'm having some joint pain, especially first thing in the morning, from the daily pills (tried to go back to get the spelling of it and lost the whole message) but it is manageable and gets better as the day goes on. It hasn't been uncomfortable enough that I don't continue with life as it was before. My very best friend lived with stage 4 for 5 years and entered hospice care about the time I was diagnosed. She never let herself be a victim and I learned much from her, including I think, that I will know when I have had enough. I'm guessing you will too. Not a lot of us seniors on these threads so know especially that I am thinking about you and do understand your reluctance to have lots of invasive treatments.

HapB, I used Penguin cold caps, and they work really well with weekly taxol. I wouldn't say I had no side effects from taxol - but they weren't bad by comparison with other chemo regimens.