HER2 positive research trial TPIV100

Hello @zeerj Wow, if I had this option, I personally would do it. I bet there are others who might not but here is my thinking.
A vaccination has never hurt me or anyone I personally know beyond the normal aches and pains of building an immunity response. Basically it can’t hurt and it might help.
They gave it to 20 people just to make sure it was safe, now they need to find out how effective it is. How cool would it be to find out it is effective and you were part of the trial that ushered in a new vaccine for breast cancer to help thousands of women a year diagnosed with her2 breast cancer. When I was originally diagnosed 18 years ago, her2 patients were mostly precluded from all trials because we had poorer outcomes.
If your clinic is doing trials, they are probably not the only clinic doing that same trial. You could ask for the data, also it might be a double blind where you are not really sure you get the vaccine or not, I would ask lots of questions.
Are you leaning in or out?

Thank you for your input! Greatly appreciated. I am more leaning in since I have to be enrolled before I have the 6th kadcyla treatment and I’ll have the third next week. Like you said, I may or may not get it. It’s 2 to 1 so I hope if I go thru with it I do get it with my odds higher. It is always the unknown that gets me like what if it interferes with my treatment. I know it’s not likely for them moving to phase 2.

I hope you don’t mind me asking, it sounds you had her2+, if so, do you mind sharing whether you had mastectomy and reconstruction? Also can you share the treatment you had and the stage at diagnosis? I’m always looking for positive stories. 🙂

I am her2 positive, I was diagnosed in my 30s. I had a surgical biopsy, then a partial mastectomy, about a third of my breast. Then back again for axillary node dissection. I was stage 2b, with grade 3 cancer. In one year I had 6 rounds of TAC chemo, 6 weeks of radiation, and then an oopherectomy. I took 5 years of tamoxifen, and almost 10 years of arimidex. I had to go back and take herceptin because it had not been approved for frontline use yet, only relapsed.
It has been grueling at times but usually in short bursts, then I get to whine about it for years. 😂😂
I was diagnosed 18 years ago, and given the original news on the Wednesday evening before Thanksgiving.
I love how far they have come with treatments for her2, I love that everyone doesn’t have to take all the most aggressive treatments.
The one regret for me is that I didn’t push harder for mastectomy. I really wanted a bi lateral without reconstruction, when the doctor said no they don’t do that anymore, I accepted that. I made the best decision as I could at the time, and I am truly grateful for the life I have had for these years.
Are you being treated at a large cancer center? Are you still considering a mastectomy?

I am being treated at Mayo Clinic in AZ. I count this as blessing. I initially started at a different clinic which my pcp referred me to before diagnosis. Deep inside I feel if I had been at Mayo to start with, it would have been caught before it moving to stage 2. Mine is grade 3 as well. I already had mastectomy on 9/27/22, I opted for bilateral even though the surgeon said I don’t need to do the other one. She supported my decision. She was able to do nipple sparring. I have expanders currently in due to doing radiation. My other dilemma now is whether I shouldn’t have done the nipple sparring and just have the plastic surgeon rebuild the skin and nipple using diep flap. I had anxiety after the mastectomy whether it was right decision to do nipple sparring.
Have you done anything different since diagnosis diet related?

I eat better than I used to but I don’t get crazy about it. I like to look for balance. I eat very little meat, dairy, sugar, but I do bake with real eggs or butter. We don’t consume a lot of sugar but I eat a bite of home made marmalade or a bit of honey occasionally. I eat salad for supper most nights, I also take a multi vitamin and additional calcium, and vitamin D3. I don’t believe you can fight cancer with diet alone or exercise alone, but I am willing to hedge my bets. Lol
I can’t wait to hear what you decide about the trial, my husband did a couple trials at Mayo Rochester. What a gratifying thing to do.