TRIPLE POSITIVE GROUP

Bartley, thank you so much for posting about your treatment and seven years NED!! Something that everyone here wants to hear.

Hello Gudrun

Nope. 6 positive nodes out of 18 removed. They weren't extra capsular or anything like that. Even so it was a scarey result at the time. I can't do anything other than be grateful for the treatments and the fantastic care I received from the medical professionals.

Congratulations Bartley, 7 years NED! (I want to be you, in 5 1/2 years!) Thank you for posting "hope" for the rest of us.

In the matter of Nerlynx, the benefits were definitely mixed. Clearly Hormone positive and those with 4 or more positive nodes got more of a positive result than the group as a whole. If I were interested in Nerlynx, I would ask my Onc to see who got the most benefit in the 5 year results. Even then, if I did not fit the profile for the most benefit, and I felt, in my gut, that I needed to take it, I would still consider pursuing the option.

For me personally, the cost and side effects are enough of a barrier that I have decided not to pursue it, but I support anyone who decides that it is the right course of action for them. In any case, it is another arrow in the Her2 fighting quiver.

One further note, I lurk on a number of forums where HER2 individuals post. Puma, the company that makes Nerlynx, had allowed compassionate use of their drug (allowing someone not in a trial to have access to their drug before FDA approval) in an effort to slow the progression of Her2 cancer for at least one patient. I have read that most pharmaceutical companies do not do this.

Kimcee - I LOVE your wig, you are beautiful! The color is awesome and looks totally natural. Good luck with your surgery on the 15th, you will feel wonderful once those expanders are removed.

Bartley, thank you for sharing your experience and congrats on 7 years NED. That is so encouraging for all of us. I especially appreciate the balance that you have achieved with your lifestyle. It's important to reiterate we are all individuals and we need to find what works for us.

Posey have a wonderful time in Punta Cana - the sunshine and relaxation will be wonderful for your immune system, lots of vitamin D! I am going to check out Dr Schwartz, thanks for posting!

Bartley, 7 years NED is exciting!  Thank you for posting your success story, we all need to hear this sort of thing more often.  Here's to many more years NED.

Jstarling--I'll be a few weeks behind you. Surgery tomorrow. Fingers crossed, ladies!!

HapB- I'm not going to lie, the first one knocked me completely on my butt, which I was not prepared for. I've only had the one infusion. I wasn't expecting to start that day, but my MO gave me the option to and I travel to Dana Farber for treatment so I like to get all the things done when I'm there. So I went ahead with it without over-researching like I normally do. MO told me possible "flu-like symptoms" but the night of the the infusion I woke up to chills, aching, teeth chattering, it felt like actual flu. Then for two days I was cannot-get-out-of-bed exhausted and bones ached quite a bit. Of course after coming home and researching on these boards it sounded like exactly what lots of people experience with it. It did sound like there are pre-meds (benadryl, extra fluids) that can help with this as well as taking Claritin before and a day or two after (if you had Neulasta you maybe did this and it sounded like it can help in a similar way.) I also read that it is often worse your first infusion and that some people tolerate it just fine. So I will prepare better next time and ask for the fluids and will do Claritin. I was grateful last time I had it on a Friday morning, I was useless that weekend but back to work on Monday and was fine just maybe a little tired after that, so I will plan it again for Thursday or Friday. I am happy I'm getting it, feels like I am doing something proactive and the stats on it look very good from what I've been researching.

HapB- I am already finished with my Herceptin, so I started it on its own. I will say I felt completely fine when I left, felt good enough to go to a concert that night and dinner... then woke up a 2am feeling not so great. I fly for my appointments and had no problems flying back home that day. So you probably would be fine to drive yourself, but if you might need or want benadryl better to have someone drive you. I am trying to decide whether to have someone come with me next time. I also just get it twice per year so have time to figure it out for next time.

Thanks, Hap. I took tomorrow and Thursday off and I’m not *great* at taking care of myself but am trying to give myself permission to be *really* lazy for a bit.

Yuck Hap...I remember it well. Moved down two years ago after a snow filled NJ winter. Come on down 😁

Ingerp, good news. Take care of yourself.

I had my visit and I have a plan. Soon will begin 6 rounds of Taxotere, Herceptin and (?) three weeks apart followed by radiation with the Herceptin at 3 week intervals for a year and hormone blocker pills after that. I was also told I would be ok for an IV rather than a port when I asked if I could swim. But now I wonder if that is a bad idea... any other advice. I am expecting a call from the office with more details in the next day or so. But at least things are going forward!

Hi, all—had my post op visit yesterday and port placement today. What a whirlwind! So, this was a small and early yet very aggressive tumor. I’ll do chemo, herceptin for a year (starts at first chemo), and then radiation. I’ll also have an aromatase inhibitor. All is healing up well. I feel like I had better OR care for lumpectomy, but the important people (aka my onco surgeon and all th pet nurses) remain awesome. Hope everyone here is well. I know I’ll have chemo questions once I meet with medical oncologist on 27th. Chemo expected to start around April 5. Btw, while not for everyone, a port is going to be good for me and my weeny veins. I can hardly see it. I can do any activities I want starting in 2 weeks....but again, that’s a sample size of 1....:

Jstarling - I believe I have the same infusion plan you're going to get - 6 rounds of TCHP chemo, followed by 8 more months of Herceptin and Perjeta only, on an every 3 week schedule. I have lousy veins to begin with, but for me there was no discussion of not getting a port. The surgery was not a big deal and I've been glad to have it both for my infusions and lab draws. I had mine placed on the side of my chest near where my armpit starts, so that it wouldn't show.

Jstarling, I had my port placed the day before my first taxol\Herceptin infusion. I 've had no problems with my port, use for blood draws also. The nurses are great at accessing the port, my veins are just ok. In fact I am thinking about keeping my port when I finish Herceptin in May, just in case.

hap - wanted to point out that “early stage” breast cancer includes up to stage IIIA, and Taxol and Herceptin in the DF study (and NCCN recommendation) is for those who are node negative and up to 2cm, so essentially Stage I, and you could even say IA. To say it is approved for “early stage” is a misnomer.

I am wondering where you got the 15% figure on permanent alopecia from Taxotere? I have never seen that number and I think it is an exaggeration. I personally believe that the actual figure is between 6-10%. The Taxotere lawsuits, and they are individual suits, not a class action - I believe roughly 2,300 of them, do not stem from the hair loss itself, you can’t sue for that. The lawsuits are based on whether patients were made aware of the possibility that their hair might not grow back. I was aware of this in 2010 and had a conversation with my oncologist, and it was discussed on this website as long ago as that. When I was treated my MO said of all the patients he had treated with Taxotere (he is with the largest private oncology group in the US) he had onlyone patient whose hair didn’t return. If the 15% figure was accurate there would be more people on this site discussing this, and I feel more would be filing lawsuits. To file, you had to be treated prior to 2015 - that is the date labeling was added to include the warning.