TRIPLE POSITIVE GROUP

HapB

I have my treatments at Clearview Cancer Imstitute in Huntsville, Al.

Getting chemo was a pretty easy decision. My husband asked my Oncologist what would happen if I decided not to take chemo. He said "She doesn't have to take chemo. But when her cancer returns and it will return without treatment, it will be lethal."

I said, "Can I start Monday?"

This conversation is etched in stone in my mind. It makes the treatments easier.

Coach Vicky

Thanks coach Vicky and Elaine - you inspire me with all the great info you've provided to so many in his group! My MO basically said the same thing i.e. without treatment chance of recurrence would be far worse. Chemo would have been necessary if my tumors did not respond to the HP; I was blessed to get the results I did.

Upheld - I had "unremarkable" lymph nodes when I had my two breast biopsies. There was slight swelling but nothing showed up on ultrasound so they decided not to biopsy the lymph nodes. I had 2 tumors far apart and enhancements on the outer quadrant of the left breast. I am being treated at Cancer Treatment Centers of America in Zion, IL (Chicago). They have 5 locations in the US. The link to the trial is https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

HapB, I'm so sorry that you have to go through another cancer. Welcome to our group, the ladies here are just awesome and we're all in this fight together! I can relate to you not wanting to have chemo again. I didn't want it either when I was diagnosed which prompted me to seek a second opinion. Thankfully my MO just got FDA approval for the triple positive trial and I was the first "official" participant. I think there are 8 women currently on the HP no chemo protocol and all have experienced tumor shrinkage. I am beyond grateful for the forward thinking of my MO and the treatment philosophy at Cancer Treatment Centers. The trial link is https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

I would be happy to provide more info on the trial. I'm having recon surgery tomorrow so I won't be able to post until later this week. The trial link provides contact info - my MO is an amazing man and very passionate about this trial. I'm sure either he or his research consultant would respond to any inquiries.

Best wishes to you both, stay strong

Hap B, I finished Herceptin in December of 2015. I drove myself to and from chemo, but one thing to consider is your reaction to Benedryl. Many women get drowsy on Benedryl and sleep through Herceptin as a result. You may want to consider your support network if you feel like you won't be able to drive home alone.

Suburbs,

I am so sorry for your wait and dealing with this saga. I know you will come out on top!

Thanks for the reminder that all questions are welcomed.

Please ask your MO if you are a candidate for an iron infusion. I had one 2 weeks ago. Yes, I am still tired but I am not fatigued, weeping, brain confused. I did not realize how chemo induced anemia was effecting my quality of life. Had a LONG TALK with the MO Team to ensure they do not allow me to get that ill again.

Best Wishes!

Coach Vicky

Suburbs,

Glad it is on your list.

When you get yours (and don't let your MO say your labs aren't low enough ... Focus beyond the lab numbers and your side effects) make sure you eat a citrus acid raw fruit. The Dietician at the Center I go to said to eat strawberries and or oranges. I ate a Halo when the infusion first started and slowly consumed 2 more during the 30 minutes. I continued for a week with at least 2 Halos a day. I did not get nauseated like everyone warned me that I would.

Who knew!

Coach Vicky

kae: My UMX was 6 weeks PFC. The path report shows that my tumor shrunk from 2 cm to 1 - 4 mm and there were no active cancer cells. My SNB was also negative. So my BS and MO have declared me cancer free.

Thanks KB870. BellasMomToo, was the 1-4 mm that was found made up of dead cancer cells? i asked this because, i had an mri after 4th cycle ofTCHP and result showed the tumor was reduced to half its size. my MO and i were a bit surprised because we cannot feel the lump that was palpabale before. my MO said she hoped some of it are inactive cells. we were going to stop at cycle 4 due to SE's but my MO does not feel comfortable doing that after she saw the mri result. so 2 mo cylces for me. i had an appointment with my surgeon the following week and he too cannot feel the tumor anymore. i am still glad that chemo shrunk my tumor and i pray the last 2 cycles will wipe out the remaining cancer.

thanks BellasMoMToo

Moodyblues, my regime is exactly like yours and I am taking the Perjeta. Also, Neulasta. I am getting the results of my PET scan tomorrow to see if I have mets. If not I will begin the chemo May, 30th

Thank you! I covet your prayers.

Upheld.  Did you have surgery or lumpectomy, was there any lymph nodes involved?  You don't have to answer...just curious.

moodyblues - You're not missing anything. I just never heard of that regimen and would be curious to know how your diagnosis differs from mine in order to use Taxol instead of Taxotere. (I've heard Taxol is easier on the hair, which I'm trying to save with cold capping.) I'm guessing because they found a microscopic cancer cells in 2 of my 4 lymph nodes, that's what makes the difference. No idea though.

I have also not seen Taxol combined with Carboplatin in a weekly dose. Generally, for triple positive patients Carboplatin is given every three weeks with Taxotere, combined with targeted therapy such as Herceptin and/or Perjeta, and Taxol or Abraxane can be substituted if the Taxotere is not well tolerated, but the infusion remains at every 3 weeks. Taxol as a stand alone therapy is given in weekly doses over 12 weeks usually for stage 1 (1cm or smaller), or weekly when combined with AC-TH (+P) for larger tumors. These regimens are outlined by NCCN guidelines, pages 56-57, linked below.

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/#56

Moodyblues, I thought I had posted a reply to your above question, but I don't see it here. I had three tumors in my breast and one in my lymph node. All four tumors were positive and I am triple positive. My tumors are large, so I'll have to have a mastectomy after the 18 weeks of chemotherapy. I will also be on Neulasta while taking the chemo.

HapB – I was told the same thing that I could get a lumpectomy on the cancer side and not need a mastectomy at all for the same reasons. After talking with the plastic surgeon, I opted for the mastectomy. The PS said I would not be happy with the cosmetic results if I did a lumpectomy because my chest was small (size B/small C) and a lumpectomy would remove almost 50% of the breast tissue. Once I decided to go with the mastectomy on one side, I decided to go with a skin-sparing prophylactic mastectomy on the other side even though there was no cancer there. I look at it this way, this diagnosis will take at a minimum one year out of my life and I'm going to do everything in my power to ensure it doesn't come back and hijack any more of them. I also did it for peace of mind. My surgeons were just fine with the decision but they did make it clear that it wasn't necessary.