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cbnimh
cbnimh Member Posts: 40
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  • elderberry
    elderberry Member Posts: 1,037

    cbnimh: I went back and read some of your old posts under another thread. I am not sure what they mean by "aggressive but good..." HER2+? You'll get more answers when you know your staging and type etc. If you do Taxol or its relative, alas, you will lose your hair. I knew what was coming so I cut it really really short. Two rounds in I got a buzz cut. I knew having handfuls of my hair coming out in the shower or on my pillow would be traumatic. I cannot advise you any other thing. I hope you develop a good relationship with your MO. That is so essential. I had a PET scan. I was going to do Herceptin so I got, and still get every three months, an echocardiogram. There are lots of ladies here to guide through tis unsettling (understatement) time.

    I am sorry you are having to go through all of this along with worries about your daughter.

  • cbnimh
    cbnimh Member Posts: 40

    @elderberry I have no idea what they mean when they say that, either. I'm just quoting. Possibly misquoting. They said I had a "good cancer" but it "moves fast" and it will "melt away" with chemo. I honestly feel a bit lost. And Taxol was mentioned along with a list of things. The appointments moved faster than a shell game on a Vegas sidewalk. I trust the doctors, they seemed to be doing their best and seemed to care. I know they were fitting me in and trying to make things move fast, so that's why I guess. I'm supposed to hear from a nurse that will go over it more slowly l, but I'm not sure knowing more helps or gives me more to Google and get confused by in the long run.

    They did say losing my hair was a given. I'll probably buzz it and get a wig. Not a huge first for me. I had bad psoriasis when I was nursing my daughter years ago and buzzed my hair down Sinead O'Connor style (it had been waist length) because I didn't want to be bothered with complicated treatments or heavy drugs. It looked awful, but it grew back and I was able to manage the psoriasis more effectively. I'm not happy about it, but with everything else, it's the least of my worries.

  • maggiehopley
    maggiehopley Member Posts: 97

    I am just a little farther along on your path. Her2+ and doing weekly taxol x12 plus herceptin and perjeta. This week will be number 8. I am tolerating chemo very well, with fatigue and flu-like symptoms but no major side effects. I actually still have a decent amount of hair (started out shoulder length), although it started shedding at week 4. It is definitely a little traumatic to have it constantly falling out, but I can still go out in public looking close to "normal" so I am not going to shave until I have to. I can see why most people decide to shave. I ice my hands and feet and have not had any neuropathy so far. I also had an echocardiogram, a CT scan, and a bone scan. After chemo I am having a double mastectomy and will stay flat. My tumors are shrinking, so I am hopeful.

  • cbnimh
    cbnimh Member Posts: 40

    I haven't had the CT or Bone Scan yet. I'm set up for that week after next. They will also be installing a port of some kind, which I have mixed feelings about.

    Mine is every 21 days. I thought it would be weekly and over relatively quickly, but it looks like this will be stretching out a year for the 17 cycles in two rounds (first is 6 cycles, last is 11 cycles) and take at least a full year. I'm still fuzzy about what comes next and when the mastectomies or lumpectomy might happen. The surgeon was saying double mastectomy and reconstruction b/c he thinks I'll be a high risk. I'm not sure what that is based upon?

    I haven't been told a stage or anything else yet. I assume they can't do that until those scans are in for viewing. Is it better to go once a week? Seems rough, but hopefully that kills it faster for you.

    I'm thinking a whole year of this is going to drive me up a wall just from the logistics of it all with kids, work and grad school. Not to mention my daughter's mystery lump situation, which I haven't heard results of her tests this week yet, so I'm hoping no news is good news.

    My hair strands are pretty fine, there's a lot of it, but if I lose any it will look weird pretty fast. So, I plan to shave it relatively soon and just get it over with, I think.

  • melbo
    melbo Member Posts: 266

    Based on what you have said here and with a her2+ tumor, it sounds like you will be getting chemo for 6 cycles along with herceptin (a targeted drug for the her2+ part of your cancer), then 11 more cycles of just the targeted drugs. That is a pretty standard treatment for her2+ breast cancers (and is what I had.) The specific type of chemo you get and the specific targeted drugs usually depends on how big the tumor is . Taxol (chemo) and just herceptin is pretty standard for smaller tumors and taxotere with carboplatin (both chemo drugs) with herceptin and Perjeta (another targeted drug) and more standard for slightly larger tumors. (There are also other options and different considerations go into which ones the doctors use — those are just the really common ones.)

    The early days days of diagnosis are the worst — but it gets easier as you adjust. Chemo sucks — no way around that, but it probably won’t be as hard as you think it will be. (I suggest reading chemo boards here and finding someone who will be getting similar treatment as you — it helps you figure out what to expect.)

    The port is also not a huge deal, minor surgery to place it, and then it makes it much, much easier to get your infusions of medications. Ontreatment days you will be attached to IVs for several hours at a time (not as bad as it sounds) and having the port in your chest makes it much easier to navigate to the bathroom or even just watch tv or read. My port had to come out early and it was annoying trying to operate my phone/book one handed while I had an IV in my arm for treatment.

  • cbnimh
    cbnimh Member Posts: 40

    That sounds about right. Sorry, I'm new and it all feels like it's been going a million miles an hour since the start. A month ago if someone would have told me I'd be diagnosed with cancer and on chemo I wouldn't have believed them.

    This is the path I got: : DOCEtaxel Day 1­CARBOplatin Day 1­Trastuzumab Day 1­Pertuzumab Day 1 every 21 Days

    x 6 cycles followed by Pertuzumab Day 1­Trastuzumab Day 1 every 21 Days x 11 cycles

    The port, I only worry about doing something stupid with it by accident if it is sticking out of my chest. I'm also guessing I can't swim with the kids anymore. (Small price to pay to get better, I know, but I'll miss it.) I can see where it would be useful, because my veins didn't like it so much and I had to have the IV relocated midway through on my first go around. I'll move along to the chemo boards.

    Sorry if I sound like a complete idiot. I'm trying to keep up but with work, 4 kids, and grad school I'm feeling a bit fried. We're fighting so many things on so many fronts right now. I couldn't be with my daughter for her MRI because I was at chemo...and that's just for starters. I can't wait to put this part of life in the rearview mirror.

    Thank you for your response. Hope you have a good weekend.

  • elainetherese
    elainetherese Member Posts: 1,625

    Just a quick note to let you know that you can swim if you feel up to it. I swam through chemo and I was fine.

  • cbnimh
    cbnimh Member Posts: 40

    That's great news! Is there anything special I need to know to avoid contaminating the port? I'll ask the doctor, too, but practical experience is useful. Thanks!

  • spookiesmom
    spookiesmom Member Posts: 8,149

    The port is completely covered with your skin. Makes a small lump. You can swim and shower. My port has been in 11 years barely noticeable I don’t want it out.

  • olma61
    olma61 Member Posts: 1,016

    They say HER2+ is “good" because the treatment tends to bevery effective, moreso than the other subtypes

  • melbo
    melbo Member Posts: 266

    so the drug combo you described is usually referred to in shorthand as TCHP — you can see in my signature block that it’s the same treatment I had. (All the drugs have two names — it’s really annoying.) so just look for references to that on the chemo boards. Of course all the chemo regimes have some what similar side effects, so it’s really useful to just read through a bunch of them.

  • cbnimh
    cbnimh Member Posts: 40

    @melbo Thank you for the information. That is more or less my treatment plan but surgeon is saying double mastectomy with reconstruction to avoid reoccurrence. Plus Neulasta and two pre-chemo drugs of some sort. I get chemo every 3 weeks with surgery TBD after 6 rounds (so that's 4 more rounds after the last one I had yesterday). My hair started to go last week so I shaved the remainder because I hated it coming out in clumps. Had some kind of face rash like acne, neuropathy, neutropenic fever that I went to the ER for and got IV antibiotics. It's been a ride to say the least. Daughter still has mass in her abdomen that we are watching. My grad school and full time work from home have been understanding but it's still a lot of work and I'm going to try to soldier on through my thesis while this whole thing goes down.


    Good news is the scans didn't appear to show any metastasized cancer. The bone scan showed some weirdness but the doctor said the CT scan looks fine and, for what it is worth, although he said it's apples to oranges, the tumor in the breast measures as 1.6cm in the CT scanning. I assume all is well because the doctor said no metastases despite some of the dye settling in some places? I wish I knew what more of this meant.


    My labs show high RDW (sd), high absolute immature granulocytes, and low MCHC. Does anyone know what that means? I'm sure the doctor would say something if it was an issue. I just recently got on my patient portal so I'm was browsing to see what's there.


    Again, thank you for the info. I hope your treatment plan is going well. This is rough stuff. I'm still trying to figure out how to manage it well and keep "normal" in place for everyone. It's an uphill effort, though.