ER-, PR-, Her2+ Roll call

@djschmidt1 thank you!! I was concerned about the platelet count as it was normal range before chemo started. And yes, I go back tomorrow for fluids and bloodwork again so I'm planning on asking them about the mouthwash. Thanks for the info!!!

@bailey.boo Sorry you are going through this as well but glad you found this group. They have been so helpful to me. I too have ER and PR - and Her2+, IDC, node positive. They staged me at IIB, grade 3. After biopsies, I met with a surgeon who ordered several scans (PET and MRI), chemo port placement. She referred me to my Onc. Mine is chemo first, surgery, then radiation. My chemo is TCHP, taxatore, carboplatin, herceptin and perjeta. 6 total treatments one every three weeks. I just had my first one on 4/18. So I'm fairly new in the game as well, but thought I'd share. Feel free to ask anything!!

@djschmidt1 when I went for the treatment, I assumed that herceptin and perjeta would be two different IV drips. Mine was combined in a syringe that was injected to the thigh muscle. Is yours a one shot thing as well?

Hi @djschmidt1. Thank you. I’ll probably come back after my first oncology appt on Monday with many questions!

@djschmidt1 from what I read, those two drugs are made by the same company and they created this version as well. When I asked the nurse, she commented about the muscle being a good way to deliver the drug into the body. If I remember correctly from what I read, it was FDA approved in 2018. Gonna do some research on this.

@grammie2 of course everyone is different and I can honestly say yes my SEs changed each time, sometimes each day…mine have definitely increased each time as well. Always something different, skin issues, neuropathy, muscle pain, constipation, diarrhea, and the strongest is increasing fatigue. I’m really hopping you sail through, some do. I tend to not take many meds but I get the odd side effects on everything because I’m very sensitive to drugs/meds. I know it’s not great news but you may be completely different.

hi @grammie2 . I hope you’re feeling better. I’ve started reading through older posts in the thread. I’m curious…. how did working from home go for you during this first round of chemo? I’m fully remote, and the company I grabbed up a job with on the tails of a layoff is so small that they don’t have disability benefits. (Oh boy am I ever kicking myself right now! 🙄) I figure chemo and surgery recovery as the big worries for me. I am a vacation time hoarder by nature, so the surgery time off should be okay. But that chemo time on top of it could add up fast!

That’s great to hear, @grammie2 ❤️

Having support at work is gold. And getting to work from home when you’re not feeling 100% is also gold. I traveled to my office every day when I was being treated for thyca but, as I was continuously told by all, medical staff and otherwise, “oh, you are so lucky! That’s the GOOD cancer! If you’re gonna get cancer, you want that one!” I’m suddenly understanding these statements; this breast cancer business will likely be a way different beast. Plus I’m older now— 50 and very-newly-post-menopausal. I’m still hoping and praying it didn’t sneak past my armpit! And hoping I can work through it. And, darn it, I still really want to start my masters program this fall! It’s a promise I made to myself long ago, and I finally made the commitment to do it and got accepted.

I’m so glad you’re feeling okay, and thank you for sharing your info with me!

My outcome of today’s first oncology visit: Stage IIB (that could potentially go higher). Grade 3, HER2+ was no surprise, but the amount of stressing how aggressive it was and how fast I need to move was. She said there’s no way I’ve had this for over maybe 8 months tops, or I’d be in the hospital by now, riddled with it.

She said I need the works— chemo first, mastectomy with spacers (I’m doing bilateral), radiation, then targeted therapy. She said there is a 70% chance of success this first time around, by following this plan, as long as there’s been no spread.

I’m meeting with my medical oncologist this Wednesday to discuss getting my port and starting chemo ASAP. The oncologist today recommends that I start treatment immediately and worry about getting a second opinion after. And, bless her, she gave me a choice of forgoing the MRI or taking Valium. I’ve never taken Valium but I’m mega-mega-claustrophobic. I’m making myself do the MRI next Monday. I will not think about it beforehand, and I will take the Valium.

She also said there is no reason why I shouldn’t be able to work from home, that I probably wouldn’t take as much time off for the surgery as I am thinking I would, and that I should probably still plan to start college in the fall. But no jet ski during chemo, mastectomy recovery, or especially radiation! I knew that already, LOL! It would be my luck to catch a brain eating water amoeba with my resistance down.

She also confirmed I can no longer take the only GERD med that works for me because synthetic hormones. I just refilled that sucker for 3 months too— $600 bucks. That went right in the garbage when I got home, along with my curcurmin and anything containing milk thistle.

I hate that I have to do this. I hope to god it hasn’t spread— that is what terrifies me. And I want to get started, like yesterday, to stop this in its tracks.

@bailey.boo sounds like you have a thoughtful care team! I relied a lot on guided imagery prior to BMX surgery to help with anxiety. Might even help with your claustrophobia? There are specific audio ones for days leading up to surgery. My workplace provided them for me but I'm sure you could search Google and find them.

Oh, that’s wonderful to have options! And time to decide. My whole outer quadrant is affected, upper/lower/middle, and when she explained she could do a partial mastectomy, but… (and went into a huge and very logical explanation), I realized that was not a smart decision for my case. That’s OK. In for a penny, in for a pound. I went in thinking I would choose the fat reconstruction option over implants, because I abhor synthetic anything, but after she discussed that, too, I quickly flipped. I realized that implants are also for me. It’s not like being crunchy all these years since Thyca didn’t land me right here anyway! Lots of people love implants. I’m told the lady I bought this house from (omg, is it the house?!) got her reconstruction through the same plastic surgeon recommended to me. I’m so thankful that 1) reconstruction surgery is a given through insurance, and 2) reconstruction surgery has come so far.

Thank you for the GERD warning! She did tell me they would give me something to help.

I’m so sorry we’re all in the same boat, but I’m relieved to find support. And so early in, too. Virtual tribes for the win. Online forums were a lifesaver for me through deployments, step parenting, and thyca, and I’m happy to see they’re still around.

I’m so glad to hear you may not need a mastectomy. 40 years in practice. 😯 He’s seen it all. You've found a master in the field. The yoda of breast oncologists!

Thank you for sharing that study info. That gives hope, and I’ll take it.

And good luck at your testing and appointments! I hope the graduation celebration is wonderful!

Deployments caught my attention. Both my sons and DIL are USAF. My grandbabies are in UT and it stinks being so far away from them.

Sure! Evernote failed me or I’d be able to explain it better— it lost my whole recording mid-way and I haven’t been able to recover it. 

Apparently, when the whole outer quadrant of your breast is involved, achieving clear margins with a partial mastectomy becomes challenging because the goal is to remove all cancerous tissue while preserving as much healthy tissue as possible.

She said the complexity arises because ensuring clear margins in such cases as mine requires very careful navigation to avoid leaving any cancerous cells behind while sparing as much healthy tissue as possible to reduce the risk of cancer recurrence. And she said the functional/aesthetic results would also be subpar. 

Also, in addition to the challenge of achieving clear margins, she said a partial mastectomy would require additional radiation therapy to ensure all cancer cells are eliminated. So this means more treatments and potential side effects. Plus, she said there’s always the possibility of needing further surgery if the margins aren’t clear initially, which then means yet another round of treatment and recovery process. 

@bailey.boo Hi and welcome to this group! I’m sorry for what brings you here. You are doing such a wonderful job getting yourself prepared for your road ahead. Some things to look into that I would recommend for chemo is some kind of compression wear for hands and feet and cooling gloves and booties which seem to help many people prevent neuropathy that can be a side effect of the chemo. Also, cold capping of your head which can be helpful in minimizing hair loss. I used all of these with great results. I was able to work from home throughout everything. Yes, there were days when it was tough because I was so drained, buts it’s doable.

@grammie2 Congrats on having one treatment done and dusted! I would call my side effects that I had mostly mild but they did get cumulatively worse after each treatment. Letting my MO know was very helpful- they had lots of tips and tricks that made things better. You got this!