TRIPLE POSITIVE GROUP

Anna -

My breast surgeon and MO also told me that if you respond to Herceptin/Perjeta and you have NED or at least NED in the lymph nodes for surgery, that your rate of non-recurrence goes up to something like 97%. HP is a miracle for Triple Positive.

Kris

This information is all so interesting to hear and process. I like statistics too, though I hear you—I'm not 97% of a person and I won't have a 97% cure. All the recurrence numbers in the world still have the same bottom line for the individual: either it'll 100% happen or it 100% won't. Just have to live and hope and try and keep showing up.

Thanks to allfor the well wishes about chemo. I'm hoping it's less awful than the worst it could be! I'm glad to hear it wasn't quite as scary as you pictured, Morrigan. And I love these great stats for lymph nodes, wahoomama. I like to do some visualization at night and, in my mind, I talk to these cells and tell them that I'd like them to stop growing and that theymay not spread, and it's usually just a calming little exercise to feel some control and try to connect my body and brain, but for the lymph nodes I'm like “NO BUT FOR REAL, ALL Y'ALL CAN GET THE F*CK OUT!!" 😂🤣

Annathebrave - good luck on the chemo. I have 4 kids, and it wasn’t easy, but it can be done. I haven’t gone over recurrence rates with my oncologist yet. Part of me wonders why. I’m going to do everything possible for the best outcome, and that’s all I can do. The fear of recurrence will linger no matter what. I sure as hell never expected to have such serious and aggressive cancer at 43, so I guess now I realize there is always a chance for anything to happen. All I can do is try my best to be healthy, and enjoy the life I have.

The rate for a Her2+ driven recurrence is generally 2-3 years post-treatment. Are there some outliers, yes, but this is generally regarded as status quo. The rapid recurrence rate is one of the aspects drove development of Herceptin because the aggressiveness of Her2+ had such an impact on those diagnosed, but these timelines were established quite a while before the advent of additional anti-Her2+ targeted treatment like Perjeta, Kadcyla, Nerlynx. Of course, Herceptin was offered to patients in those trials that were ER+ and ER-, which is about an even split I believe, so TPBC represents about 10% of the diagnosed breast cancer cases. I participated in a five year Her2+ recurrence prevention vaccine trial and the purpose behind the development of the drug was stopping early recurrence, and the way they tracked success of the vaccine was by looking at short-term recurrence and the vaccine was a success in reducing recurrence in the vaccine arm versus the control arm, beyond the previous norm for Her2+ patients. TNBC has a general five year window beyond which recurrence is rare, but again, there are a few outliers. ER+ driven recurrence risk drops somewhat at five years - thus the magic timeline quoted by many - but it does continue long beyond that at diminishing rates. The interesting thing for TPBC people is that their recurrence rate beyond five years seems to be lower that those who are ER+ and Her2-, but this may also be due to a greater level of treatment intervention earlier in the disease process, or due to the unique qualities of TPBC. Subtype is also important in recurrence, so while we all have Her2+ breast cancer some of us are subtyped ERBB, some Luminal B, and some Luminal A. This affects how breast cancer behaves for us as individuals and also how effective treatment may be.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310716/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323135/

https://www.sciencedirect.com/science/article/pii/S0305737214002102

morrigan - the trial situation is complicated. I participated in the Phase II portion, but this particular trial was actually for two differing vaccines, so in actuality it was a four armed trial. Two vaccines - GP2 plus a GM-CSF (like Neulasta) and AE37 plus a GM-CSF, plus a control arm for each which was the GM-CSF only. The way patients were selected for which vaccine and control arm they would be sorted into was by tissue typing - like for an organ transplant, with HLA-A2+ in the GP2 arm, and HLA-A2- in the AE37 arm. Nothing to do with breast cancer specifically. I was in the vaccine receiving arm of the GP2 trial. Further complicating this was that the two vaccines were being manufactured by two different pharma companies. After the results from Phase II were known, which was pretty rapidly because of the typical recurrence time for Her2+ patients, there were some issues, and the vaccines - despite promising results - did not get off the ground in a timely fashion, although I believe there is still some research going on. These vaccines were initially developed by the US Military Cancer Institute by Dr. George Peoples, when he was an active duty Colonel. He has now retired and continued this work - which includes a number of other vaccines including E75, which has had more press and some participants on this site, here is a link about that. Here is a link to the trial I did (BCO member fluffqueen also did the same trial at the same time), and some info about results.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7188712/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53232...

https://www.cancernetwork.com/view/asco-ae37-pepti...

http://www.cancerinsight.com/cvdp/

@speicalk - thanks for the reply, I'll read through the links.

I find the vaccine treatment/trials fascinating

SpecialK--I love when you weigh in on things. You are a treasure!!

ajminn3 - it's interesting that your friend calls hers a "recurrence" since the 2nd set has different markers - everything I've read and what I've heard from others if that it's a different tumor (positive vs. negative for any of the three) it's considered a totally different cancer.

Wheatscapes - bone pain can definitely be a side effect of AI - so maybe the Letrozole. One of the reasons I'm researching really carefully before I agree to AI.

Hmmm.... Good question, Wahoomama! There are three levels of lymph nodes in the breast area -- for an ALND (which I had), the surgeon took out all of the Levels 1 and 2 nodes or 20 in total. In fact, most surgeons don't touch the Level 3 nodes. If a compromised node is Level 1, maybe your surgeon could just remove those at Level 1?

Fab4Mom- that's exactly what I was thinking of! Thank you!

Elaine - I definitely had one positive, which they think was the sentinel. It has a clip in there, so she will be able to tell exactly once she maps with the dye. Really hoping she checks those first 3 and they are negative. If not, she'll take the next "batch" she says, which I don't want.

Hello, all, just wanted to check in with the group’s wisdom about a few symptoms. I’m on day 7 after my first TCHP infusion and today I feel like I have a cold. My nose is runny (haven’t lost nose hairs yet) and my sinuses and ears feel clogged and I’m achy. No fever, thank goodness, so I’m not worried. Just wondering if it’s an actual cold or if this is a side effect others have experienced. Thanks for your help

AnnatheBrave- I ended up with a sinus infection my first round and continued sinus issues for the duration of treatments (sinus headaches/pressure, drainage, stuffy, all the things mixed together!). I ended up taking Claritin and Flonase everyday of treatment and it really helped. Thankfully now that I’m done with the TC part my sinus stuff cleared up.

Hey Anna!

I had the same thing happen to me on TCHP. It’s still happening a bit on Kadcyla. I just made sure I had tissues with me everywhere

As of right now, I plan to keep it in until the exchange surgery which will be after I complete Kadcyla. My BS wants to take it out as soon as I'm done. I haven't asked my MO about it. He may want to leave it in a little longer. Guess we'll see next year

Smichaels -

Something I'm debating as well. I have a friend who kept hers in and still has it after 17 years, because she gets Herceptin monthly. I would like it out ASAP - because I HATE it. But I also really can't deal with an IV, so I think I'm keeping it for the year, until I'm done with HErceptin. I know it's another procedure, but I'm having my BMX in a few weeks and I can't see already getting it out. It's a love/hate relationship, because I definitely love it for all the blood draws at the MO and the infusion.

Kris