TRIPLE POSITIVE GROUP

I had a breast MRI and a chest x-ray after I was diagnosed. That was it. They said they don't routinely do scans for early stage/node negative patients. At the time I wasn't sure how comfortable I was with that. Last year I had a bone scan due to hip issues. My MO wasn't concerned but she wanted to put my mind at ease. There have been times here lately where I've thought about wanting a scan to make sure everything is ok. The 25th will make two years for me. I know the greatest risk is in the first three years. Next year can't come fast enough!

As far as chemo for metastatic, I've seen a lot of Her2+ patients (metastatic) that start off with TCHP. The theory I've seen is that they use the big guns to get them to NED and then continue on with maintenance treatments of either Herceptin alone or Herceptin and Perjeta.

Shar, I had some charlie horses while I was on Tamoxifen. They went away when I increased my water intake.

Ladies, thank you all--This is just the information I needed to be able to ask appropriate questions regarding scans and treatment at my MO appointment on Wed. I am so grateful.

As for scans, I think a PET is merited. I'm not a fan of more radiation than one needs, but as the mother of a child (now college age) with 3 exceptionally rare, very serious diseases that doctors could not believe that any young, beautiful person could have (and certainly not 3 separate ones) I have learned that rare can happen, and often more than once.

I'm going to ask for either a PET overall body, or, m if they tell me they will give me the same treatment I would get if they knew the liver spots were mets, then I could skip the Pet and scan later down the road. (Meaning probably adding an additional chemo agent to the tAxol and also adding the Perjeta, as it does clearly seem to increase efficacy of Herceptin.)

I realize now I'm not comfortable with less than those outcomes. Thank you all for helping me with more info so I could understand this better. I will update after I discuss with my MO and share anything new I learn.

Trying to find someone who has been through similar treatment plan as mine. I have infiltrating ductal carcinoma, triple positive. I was diagnosed in mid-february and just finished up 4 rounds of Adriamycin Cytoxan. I am to start on perjeta, herceptin, and taxotere in two weeks and will get 4 of those, each three weeks apart prior to surgery. After surgery, I am to get radiation for 4-6 weeks and herceptin for a year.

Has anyone else been on this regimen? I am curious about how bad the perjeta, herceptin, and taxotere will be as well as what the year of herceptin will be like.

786tex, I had the same regimen as you. AC wasn't too bad but the THP was a lot easier. My taste buds were off for about 24 hours after each round from the Taxol. I had a few episodes of diarrhea that I believe was from the Perjeta. Other than that, I felt pretty good. Herceptin alone didn't really give me any SEs. I did notice as the year went on that I became a little more fatigued the first 24 hours after my Herceptin treatment. I hope this helps!

Additional question: re genetics, Herceptin, and tumor growth genes

Has anyone in this group (or maybe I need to check in elsewhere on this site? suggestions?) familiarity with having a certain gene mutation on the FGFR4 gene that promotes more aggressive cancer growth, and a small study of 372 people found having this snp mutation rs351855 reduces efficacy of Herceptin in those with this mutation?

I have this mutation (known from 23 and me) and will be talking to my MO about it this afternoon later, and am researching it. It seems to affect STAT3 signaling, allowing a "back door" for extra signaling for growth to get into the cancer cells and other tumor growth cells so they reproduce even faster than "normal" for that cancer. STAT3 research has been going on for a while, since at least 2009 per papers I have seen, but the one that most struck me was published only in Dec. 2015 and one of the main researchers was the Max Plank Institute in Germany and the scientist who discovered Herceptin--it's mainstream research now and applies not just to breast but to other cancers like colon, head and neck, skin, etc. And, running my material from 23 and me through Promethease, their database pops up with the info from snPedia that has that study of the 372 people.

To me, this might matter in terms of adding Perjeta to the Herceptin (as that seems to increase Herceptin efficacy), and to hitting me harder now with adjuvent post-surgery chemo beyond just Taxol (as I had nothing for the past two months when they thought I was HER negative, just the BMX).

Any other forums where I might post this if no one knows? Is there a science-question type forum?

zoziana - you might contact Genentech and ask this question, or attempt to contact either Dr. Axel Ullrich, or Dr. Dennis Slamon at UCLA. In reading about these particular genetic mutations, it appears that they are pretty common amongst cancer patients but this specific research is new enough that it may not be usable as a basis for requesting adjuvant Perjeta. There is no specific science question thread on BCO, to my knowledge. Have you spoken to your MO about this, and has he/she made a request to your insurance to add Perjeta?

786 - you also could be experiencing some reflux that is causing irritation, and you can have this without heartburn so it is sometimes difficult to pinpoint that feeling as reflux. It might be worth talking to your MO about trying something to reduce your stomach acid. Chemo causes soft tissue irritation generally, so any excess stomach acid may make that worse. Hope you feel better soon.

786tex, I didn't have any problems with swallowing either. My biggest issue with the AC was that horrible taste in my mouth and fatigue.

786tex if you tumor is over 5cm and you have node involvement you are stage III like your radiologist says. If only a few nodes then probably stage IIIA. It's just your profile says stage IIA and you are definitely not that.

I had trouble swallowing. Especially things like white chicken and dry stuff. Needed water to get it down. I thought it might be from surgery, that pipe they put down your throat but noticed after my 1st chemo infusion. Mom had the same issue after surgery. But then we found out my sister has it at times so maybe not. Gerd can cause this too.

I mentioned to my MO but she didn't know what it could be. Rarely happens now.

Zoziana I have read that too. You are doing the right thing discussing this with your oncologist. You might also want to get a 2nd opinion.

FYI for sores in mouth I sucked on ice chips. Worked real well. My MO told me to do this after I got a mouth sore right after 1st tx. Gerd was another issue. Was on 2 meds for that by the time I finished chemo. Still I feel I had it easier than most

Musosgirl My eyes got blurry for a few days but I figured out it was from the Emmend I took at chemo treatment. I did go to the opthalmologist when I finished chemo and they said my distance sight changed and needed glasses. Told them I wanted to wait at least a month after chemo before I get glasses... and sure enough to this day I am still not needing glasses for distance.

But I do have dry eye since chemo. It could be from the medications you are taking now. I am convinced the AIs contribute to dry eye. I only need to use eye drops 2X a day (I use Refresh) but you should go to your ophthalmologist to have this checked out. BTW sight chances can be a SE of diabetes too.

I did not find Herceptin affected my eyes

4th was one of my worst. Are they giving you anything for stomach issues? I was on Protonix and eventually Carafate Suspenion for the gerd it was causing. I did not get Perjeta so I had constipation. But if you are having issues with diarrhea you might consider Metamucil but check with your MO first. linky

My fourth infusion was the worst, too. I don't think I'll ever forget it. It gets better.

Taxotere can cause horrible dry eye. It happened to me; my eyes were so dry that they would water CONSTANTLY--I started walking around with a tissue to blot them. I haven't had that problem with Herceptin-only infusions, though.

Another random question from yours truly: what are your thoughts on alcohol consumption? I abstained completely for six months, and have recently started to have a beer or two after work again. I never would have given it a second thought before, but now I wonder if I should cut it out, like, forever. Thoughts?

I hope to find that out today when I meet with MO. My BS said my MRI shows the cancer as larger than the ultrasound too. I will ask about that today. I am hoping that since the ultrasound shows the lump at 7mm, chemo is not prescribed. With the bilateral and implants, does that mean no more mammos? Thank you for responding Natty.