Herceptin alone?

I had another Herceptin infusion today. From now on it is low dose infusions every other week.  I don't know my results yet of the echo from last week. Very curious.

Anyone gain weight with herceptin? I never had a runny nose, and I sorta think it's because I've had Herceptin without chemo.

I agree jittersmom...I just want to feel normal! I am so ready to be done.

Hi Ladies,

New to this thread and I had a NSBMX with 1 step to implants 9 weeks ago, just found out I'm Triple positive and still deciding whether to do chemo or not (I was gearing towards no chemo even before I found out about being triple positive). My oncoplatic surgeon recommended I do herceptin for 1 year and Tamoxifan for 5 years. 

Just wanted looking for ladies who did not do chemo and went with just herceptin and tamoxifan. There are so many threads in here that have so many women doing chemo and everything else, I was looking to find ones that did not do chemo with early stage like me.

For the ladies who doing herceptin and no chemo, are you using a port too? Or IV? I thought I could get out of the port since I'm not doing chemo, reason for port at chemo is because of the damages to the veins, is it the same with herceptin? 

Jen36-Your diagnosis is very similar to mine except the size if the tumor. The first MO I went to a couokpe weeks ago just assumed I was doing chemo and thought I was out of my mind for thinking about alternative med or doing alternative med together with conventional med. He was an ass and I'm going to see another MO on the 25th to discuss my benefits and risks. I also feel that chemo is poison and so much SEs along with it, I don't think you're vein at all about your appearance, I feel the same way about mine too and of couse our appearance is not the main thing I think about when it comes down to whether to do chemo or not, but its does feel good that we don't have to lose our hair with our decision not to do it. 

My tumor is ER+ 100% ans PR+80% and HER2+++, what's yours? Are you doing anything else other like changing your diet and juicing and supplements?  

evebarry-Do you think that they the conventional med docs and centers do not believe that sugar feeds cancer? I mean I thought this was proven main stream and not really alternative thinking. Why would they serve stuff full with sugar in the infusion room? 

What carbs do, and especially high-carb ones like sugar do, is to contribute to the need for the body to dispense more insulin to mop it up. And for whatever reason, insulin fluctuations and high blood sugar levels seem to favor the development of cancer, possibly due to erratic metabolism changes with perimenopause, menopause, and postmenopause.

A.A.

I found this topic when searching and am wondering if anyone has updates to share on using Herceptin alone?

Hi!

You might get some responses if you post your question on the Triple Positive thread. It's a very active thread where all HER2+ women are welcome. As Kate noted, however, most HER2+ get their Herceptin with a taxane. Best wishes!

VLH,

Herceptin alone gave me no side effects, but that's not true of everyone. Yes, we all fear mets, and some do produce a poor quality of life. That is why many of us endure chemo and targeted therapy. I guess I don't think about mets every day, but I know it is a possibility and have some knowledge of what to expect, thanks to the Stage IV boards here.

Personally, I feel lucky to have breast cancer which is treatable in the early stages. As you know, I had the "works," and I hope they did their job. My uncle was just diagnosed with Stage II pancreatic cancer, and there's a 50% chance he'll be here in five years, even with chemo and surgery.

You're going to have your surgery, which should provide you with a 70% chance of survival going forward. The question you need to ask yourself is what you want to do to address that 30%. Since you're ER-/PR-, chemo and targeted therapy are your primary options. Good luck; it must be difficult to make decisions, given your pre-existing health history.

Why2015, I'm so very sorry that you're having such a tough time of it. The baldness does scream "cancer" (although, of course, some people have hair loss for other reasons). I'm realizing that the stigma you mentioned is sort of the other side of the coin from having an invisible disease. In your case, people automatically treat you differently because of what they see. In my case, people, especially co-workers, thought I was lazy or wimpy. How long has it been since you started treatment?

ElaineTherese, you're so good about responding. I wish I could commit fully to treatment as you've done. It must be a good feeling to know that you're doing everything possible to kick the cancer to the curb!

VLH, one other option might be Taxol (Taxotere's gentler cousin) with Herceptin. A couple of my pals in the August '15 chemo group went that route, and seemed to have an easier go of it than those of us doing TCHP. There's also the option of THP (with taxotere); I read a recent article--damned if I can find it now--that suggests we might be able to cut the Carboplatin from the cocktail.

I hear you on the digestive stuff. I had Perjeta and suffered from constipation, but I've always done things a bit backwards.

I also hear you on the fear of mets thing, in particular CNS mets. I go through phases where I worry more than I probably could, but it's part of the process. With early-stage BC, my MO doesn't do any scans--hell, she's not even doing labs anymore--because there's nothing to be done about mets unless they cause clinical symptoms. I will say this: that worry has lessened over time. It's kicked up in the last week or so, for me, because last summer was the Summer of Sh** (diagnosed 7/2, surgery 7/6, started chemo 8/13). Chemotherapy/targeted therapy DOES reduce the risk of distant spread/recurrence by something like 18%, though ElaineTherese is right to point out that surgery is the primary treatment for stage II BC.

Like ElaineTherese, I had the works--chemo, Herceptin and Perjeta, BMX (one at a time--see above re: backwards), radiation, ovarian suppression, and endocrine therapy (the latter is a moot point in your case). I didn't want to do any of it, but now I'm glad I did. I know, regardless of what might happen in the future, that I did everything I could. No regrets here. And, though I hear you on wanting to control your final exit, the reality is that none of us knows when or how we're gonna go, just that we're gonna go. Make sense?

Here's how my radiation oncologist put it: when you get into a car, you wear a seatbelt, right? Think of some of these treatments--I'd include one of the taxanes in this category in your case--as the seatbelt. There are still no guarantees, but you're playing the odds.

It's a tough call. As for the cardiotoxicity: I worried about that, too, and now I'm coming up on my last Herceptin infusion. No cardiac changes worth mentioning. The good news is that, even if Herceptin causes a drop in ejection fraction, it's reversible in something like 99% of cases. The better news is that it's a relatively rare side effect.

As for insurance: I gotta say that I've been pleasantly surprised by my insurance company. They're all different, but I was expecting to hit the upper end of my out-of-pocket maxes, and that didn't happen last year (when the claims came to about half a million bucks). This year, the copays are adding up--I'm doing post-radiation PT, etc.--but I'm not coming near $5000 as of right now. Read the fine print: for example, chemotherapy/targeted treatments are covered under my medical rider, not my prescription drug coverage, and that has made a huge difference (I haven't paid a cent for any of my infusions).

Good luck. Hang in there.

And Why, I'm sorry you're having a hard time; I agree with you about the chemo baldness and being "outed." It's not fun. But, hell, hair grows back, and then we rock our cute pixie cut for a while, and life goes on. You hang in there, too, sister. Hugs.

I'm late to this thread but just wanted to share my experience quickly.

I was offered a great clinical trial where I had herceptin and perjeta ONLY before surgery. And they totally melted my tumor! At surgery, there was no cancer left. But afterwards I still had taxotere, herceptin, and perjeta. But I believe the purpose of the study is toward the goal of early stage not needing chemo. So there is hope for the future.

I had ZERO side effects when I was on herceptin and perjeta alone.

Also, I was able to save my hair with Penguin Cold Caps.

It sucks all around, but I'm thankful that some parts were easier. And yes, herceptin and perjeta are both miracle drugs.

VLH, I respect your choice and wish you all the very best. I hope your doctors do the same.

I'm not sure of the exact criteria, but mine was 1.5-2.0 cm. I think it was for early stage, so maybe stages 1 and 2.

This might be it. https://clinicaltrials.gov/ct2/show/NCT01937117