Can we start a HER2 roll call?

Completed one year of Herceptin this past January.

PET scan in May----NED!!

Here it is...

Hi Deb,

Have you started chemo yet?  I wish you the best of luck!  Make sure to drink gallons of water before, during and after chemo to flush it through your system and reduce any problems.  Keep in touch.

Gina

TO; Gina-m,

I am sorry for not replying before ( I just came accross to this site )

When i was finished with herceptin on september of 2006, I really went into crisis. Because in my mind all the doctors were taking care of me I was safe. I asked to myself what's now??????

It is a relief but scary at the same time.

My hair grew straight, brown and very healthy, the way it was before except those few gray strings.

I saw my oncho every 3 months after, every 4 months after 2 years. I still go every 4 months until April 2010 which hopefully will be my 5 year survivor month. To this day going for cancer tumor marker blood work, I freak out

I did not experience any changes during and after I was all done with Herceptin

My nails were messed up I am not sure it was the original chemo treatments or Herceptin caused it. It is better now but never went to back normal.

Again everybody reacts differently. That was my experience.

Watch the sun at the beginning very carefully. I had radiation too.

Good Luck to you

Let me know how you are handling it.

 Sheila

Hi juanita63

It is very encouraging to read about long term survival.

Those words "still doing good" makes me very happy for you and all BC survivors.

Keep posting when you can.

 Sheila

I had herceptin/taxol for 4 sessions. I had bad side effects mostly to taxol. I had chemotherapy before surgery. Now I'm going to start herceptin every three weeks for 12 months. I will also be getting radiation treatment.

As a T1c (far right on the stage 1 range) and NED at 7 years out, the only tips I have are these:

ASK questions, no matter how hard it is to figure out what words to use or how odd they might seem, and even after you do ask, do your best to question any answers you get until it really does make more sense to YOU.

From the time of diagnosis, long before there was mention about vitamin D, because I live in Alaska I have made it a point to get 15-20 minutes of direct sunshine per day on each side whenever it was at all possible -- including on my front porch in my swimsuit in 20-degree weather. There are studies saying that the angle of the northern sun makes that a waste of time and I have no idea whether they are right or wrong. I have to HOPE all of that helped me stay NED because some of it has been darned uncomfortable. And I will continue to do it, along with taking 1200 to 2000 IU of vitamin D3 whenever I can't get the sun.

Regular exercise statistically does make a big difference, whether I happen to like it or not. Exercise is part of my day and I just wish I could like it more than I do.

When it comes to diet, I avoid eating foods that are not organic as much as possible. It makes sense to me not to eat foods that have been fed hormones, pesticides, herbicides, etc. I eat more wild fish, and very limited amounts of animal protein. I limit the amount of of foods containing omega-6 and eat more omega-3 containing foods.

Hope that helps....

AlaskaAngel

its so nice to read everyones updates and stories, I thought I would post as it's hard to find bc stories of er/pr negative and her2 positive. I was diagnosed in sept 2019 with early stage right breast cancer. At the biopsy it was thought to be DCIS but after the lumpectomy they found 10 spots, mainly micro a few larger with the largest at 5 mm, of invasive. I went in to have lymph nodes removed, radioactive seeds only showing three taking 90+ % of the material, which were all negative, yes. Was on taxol and herceptin every week x 12 beginning early dec (way too long waiting for paths), did 15/5 radiation and had began the every three week herceptin one week after finishing chemo/herceptin. I'll finish in Dec, my first breast scan is in Sept. My port was put on the left, into the jugular, I hate it, feels like a pop cycle stick stuck on the side of my throat. Its hurt from day 1, I plan on getting it out as soon as I'm done in Dec--of course praying for a clean scan. I worked thruout which was tough, mainly from my memory being so horrible towards the end. At first I think it was stress but near the end, i couldnt remember any conversations i had with my employees the previous day which just added to the stress of trying not to sound like an idiot! Constantly saying whatttt..., lol, it was overwhelming somewhat due to being a supervisor probably. And tired, always tired and sore off and on. Currently I'm trying to get some excersize in, I walk at lunch and atleast 30 min at home. My brain has felt fuzzy/tingly off and on since I started the chemo, my oncologist doesnt know what it could be (different than when your hair is fixing to come out). Probably unrelated but I got plantar facitus (sp?). Something is up with my ear tubes, throughout the day I can feel fluid, when I yawn it's like being on an airplane. I did have tinnitus pretty loudly but it has really decreased since stopping taxol. I lost about 75% of my head hair and after chemo my eyebrows and lashes--the only good thing about covid, I got to telework right after chemo for 2 months--i looked pretty rough. 4.5 months after taxol my memory/critical thinking skills are better but I'm still thinking slower than before--and I have too many different programs to try and keep straight/fixing issues. I'll try to remember to update. I'm not complaining above, I just want to give anyone new an insight of possible issues. Sincerely, best wishes to everyone.

So ladies I see this is an old thread! Can we resurrect it again and start another Her2+ roll call. I was just diagnosed with a Her2+ cancer and am wondering how you ladies are doing? My Drs tell me herceptin is a game changer and I’m wondering if that’s true. So how many of you have been NED for 5 or more years? I’d love to hear from you

kdholt - so is your goal to talk with people who are ER/PR (hormone) negative but HER2+? Or any HER2+ people? The treatments can be quite different.

Sort of - Sometimes. But you can be ER/PR positive & HER2 positive - or you can be ER/PR negative and HER2 positive. That was my questions since the treatments can be different.

Sounds like you just want anyone who is HER2+.