TRIPLE POSITIVE GROUP

Ohiotripleplus you need to talk to your oncologist about your specific risk. The highest risk for recurrence is in the first 2 years. After that it drops and continues to drop but never really to 0 unless 30 years have passed. I know my 10 year risk for recurrence bases on my diagnosis and age is/was 16% according to my oncologist. I'm now 5+ years out so I know my risk has actually gone down because it was higher in the first 5 years. Hope that makes sense.

My tx included many "Scenic Detours" . I like winding road too! LOL. But I'd rather everyone be on the express track!

I still have my port. I got it in 2012. They couldn't get a good stick when I had my knee sx last year. They used my port and were happy to do it.they also used it for my cataract sx. I was debating getting t out but if they can't draw well, it makes no sense to get it out. Mine is basically just a flat scar. Doesn't stick out at all. Not to mention I have a pacemaker on y left so f i ones out the other lace mentioned options are not so good or me.

Much love to all.

Sammy - there are exceptions, but Perjeta is currently FDA approved for early stage with Taxotere, Carboplatin and Herceptin, so you will see TCHP as the most common combo for this situation.  You do not need to be done with Herceptin to have surgery - I had two reconstructive surgeries while still on it, and most who did BMX with expanders exchanged to implants while still on Herceptin.

Ask away with any questions - that is why we are here!

thanks so much for that quick reply. I am still going to see the 2nd oncologist next week, which again means that I am going to probably start the week of 12/14 instead of 12/7. I guess I just want to be sure that they think the same thing. It sounds like for Her2+ that is pretty standard though.
Since we are all using that same combination, I have been reading your experiences on how your body handled the side effects. Sounds to me like days 5-10 were the worst each round, with diarrhea and bone pain from the Neulasta being bad. Oh, and I know I am going to lose my hair which at this point is the least of my worries I guess I just want to know that I am not going to be stuck in my house for 18 weeks and that I can be somewhat functional for my kids. It helps so much knowing that you have experience that I can learn from.

I did 4 rounds of adrimyacin and cytoxan followed by 12 weekly Taxol and Herceptin - plus Perjeta was added in evey three weeks. Mine was done as neoadjuvant. However, my adjuvant treatment (after BMX) is Herceptin but not Perjeta because the insurance won't authorize adjuvant Perjeta.

Yes, you can do surgery on Herceptin. I've done 2 surgeries now and still do Herceptin every 3 weeks.

Good luck

hey everyone, it's been a while since I've been on here. Just wanted to share some wonderful news: had my biyearly mammogram and MRI and no signs of cancer! I am finally a 1 year cancer survivor as of November 10! It was a nice milestone to reach. I am just about finished with my first semester of graduate school and praying for normalcy

I'm having my last herceptin next Friday. I was treated at UCSF and they did 12 wks taxol/ herceptin then herceptin alone for the rest of the year. Scheduled to get my port out the week after that. I'. Small and basically it sticks out like doorknob and you can see the whole dang thing through my skin. I'm glad to have had it because 25 yrs ago I did 8 mid of chemo without it just in my arm but boy... I really can't stand it , can't sleep on that side without it hurting... And it just creeps me out since it's definitely not subtle.

Congratulations runningcello - that is wonderful news!!!!!

Good morning, everyone. I recently completed surgery, am headed toward beginning my Herceptin and chemo treatments realitively soon, and searching the boards to find others with my stage Her2 positive cancer who are/were on the same regimen that is recommended for me and could share their experience

First, I have early stage 1A, triple positive IDC and am recovering from my BMX with TE placement surgery. I like my MO, who is well-respected and practices at a first-rate NCI-recommended hospital. My MO recommends the regimen combining Herceptin and Navelbine for me. If I'm correct, Navelbine seems to be a "lighter" chemo (i.e., no S/Es of hair loss or neuropathy), which MO said has been a traditional chemo for lung cancer and used very successfully with Stage IV breast cancer patients. Dana Farber conducted a single arm study with women who had similar small early stage HER2 positive tumors as I have, who did well on this regimen according to MO. I haven't seen anyone else posting on the boards with HER2 positive cancer at my stage who were on this regimen. Hormonal treatment will follow this treatment, as is usual for us triple positives.

Should I start a new thread or am I in the right place to post my questions about others like me on this regimen?

Thanks.

jersey - yay!  Good for you!

keepsake - I think you are correct that there don't seem to be many early stagers on Navelbine, most I have seen have done 12 weekly Taxol plus Herceptin for a similarly staged tumor.  To gather some info you could post about Navelbine questions on this thread:

https://community.breastcancer.org/forum/8/topics/783594?page=106#post_4570348

It is populated with some stage IV ladies who potentially have more Navelbine experience, but possibly not with the Herceptin added.  I think this regimen is new enough that you may not find others with similar stats to you posting yet.  Wishing you the best - and you can always stay here too!  Some of the side effects of chemo are similar regardless of the drug so the folks here can also help, and we all have Herceptin info.

running cello, congrats!! That's awesome news!! I am about 5 months ahead of you....lets keep hoping for NED

Sammy3, It's all so overwhelming at first. I actually met with 3 oncologists and went with the treatment plan that 2 of them had recommended(which was TCHP). You should have an echo(ultrasound of your heart) every 3 months to keep an eye on your heart. I finished Herceptin Feb. 2015 and never had any heart problems. I totally agree with Amstar15 and try to take it a day at a time. Believe me, I know it's easier said than done. Everyone is different and responds different to the treatments but for me I had nausea, horrible dry mouth and yucky taste in my mouth for the first week or so, was really difficult to eat(I lost 10 pounds during treatment and really didn't need to lose any), had horrible rash/acne on my face and scalp(it was painful) my MO did prescribe a topical antibiotic gel that helped so much!, diarrhea(bad, like having to run to the bathroom to make it there in time), heavy/sore legs....it was the wierdest thing, if I bent down to get something I could barley stand up after, dry skin. PM me if you would like suggestions on things I did to help with these things! I was not stuck at home, I actually continued to work(although I am part time and only work 2 days a week). I would work Mon and Tues, have treatment on Wednesday then work the following Thurs and Friday(so had a week off after chemo). I have three kids(at the time they were 11, 10 and 6) and I did everything that I did before, my husband was amazing and if I was tired I would rest or go to bed early but never missed a function, practice or game(they are all very busy with activities). I did everything in my power to make things as normal as possible for my kids.

I wish you the best and the women on this site are AMAZING!! If you have a question about anything don't hesitate to ask!

Kath

I have my 6 month check up with my breast surgeon on Friday next week. I'm a nervous wreck. I don't know why...I just finished treatment and the odds of the cancer being back already have got to be really low. But the thought of another mammogram is extremely anxiety provoking for some reason. :-(

keepsake I had a friend with advanced staged cancer (HER2+ only) that did Navelbine. It's a great treatment because there are less side effects from what I hear. I do believe it might be newer and more expensive or possibly not tested on early stage so it isn't given as first choice unless there is an issue. Insurance doesn't want to pay. But that was a few years ago so things may have changed

@keepsake, I think you and @lago could be right about the Herceptin/Navelbine combo. Because of the ACA (Obamacare), insurance companies may now be paying for Navelbine where they wouldn't before because of expense. It also could be that your MO has seen studies that say it's just as effective on early stage BC and thinks since you are so early stage that "the standard" would be overkill for you and is trying to save you from more adverse SEs.

@jerseygirl, so glad to hear from you and that your surgery went well.

Best wishes to all.