ER-, PR-, Her2+ Roll call

@catarina_fm so glad you got to go on this adventure!!! I met with my MO yesterday for the mammo followup and she confirmed all looked well and we will repeat mammo in 6 months. She did say the seroma had decreased size by about a half!! I could tell by feeling it that it was not as large.

So last night beekaycro's cousin messaged me and said she had let her daughter know I had reached out. They said they could use all of the prayers they could get. I had hesitated about giving a lot of info at first, but they know about this group and are welcoming all prayers.

We know that she had double pneumonia and had last posted here that it was caused by Kadcyla. The last response I got from our private messages was on 5/27 so I knew it must be bad. They intubated her 6 days ago, she developed a hole in her lung from the pressure of the tube that can't be repaired and will have to just heal. Last night they messaged stating her husband had met with the drs and everything is moving slowly but expected. They think it will take a few more weeks for any huge progress to be made. Her numbers are steady. They don't think the hole will heal until she is off the vent. As long as it doesn't get bigger, it should be ok.

Her family is really worried about her as you can imagine. She and her husband have been married for a very long time and I'm sure this is so very hard on him. I will update as I hear any news.

Hugs and love to you all!

**morning update - she had a good night and numbers are good! They are alternating her position from lying on stomach and back. They flipped her back to her stomach this morning. They are now able to give her albuterol which means her lungs are now able to absorb it! They will do another chest xray later today. All sounds very positive this morning!!

@grammie2 thank you so much for your update! I also had a feeling something was going on 🥺 We’re all rooting hard for everything to turn out well… And it will, I’m sure of it. our friend is strong and deserves all the best! 🌻I truly hope everything goes as well as possible and that she’s left with no lasting effects. She’s going to be okay! It’s not an easy situation, but I know these things take time to resolve. Sending lots of strength to her whole family, and especially to her. Please keep us updated!

And I’m really happy to hear your seroma has reduced. You’ll see, it’ll disappear with time and your mammogram results will keep being just like that 😊

All the best to you all, and let’s all send positive energy to Berta! 🙏⭐🍀

Hi girls! I had my port removed today — I was a bit scared because getting it placed was awful, but removal is much simpler! I was lying on the table for 10 minutes, got 3 or 4 lidocaine injections, and after that I didn’t feel a thing, just some light tugging. The doctor was very gentle, and at one point they applied pressure to the vein in my neck. From what I understood, it’s not just about removing the catheter — they also need to cut the tissue that forms around it. But it’s quick and not painful. The only thing I actually felt was the last stitch at the end, probably because that area was less numb. I got absorbable internal stitches, and now I have to go for dressing changes twice and avoid lifting weights for two weeks.It’s such a relief for me to have the port removed, first because I don’t need it anymore, and also because it always bothered me and was very noticeable.

@chocomousse good luck with your treatment! Keep us updated. I hope you have very few side effects! I’ve heard of Enhertu and from what I’ve seen, it gives great results.

I’m still rooting for our friend Berta. hoping she recovers quickly from the pneumonia!
Wishing you all a great weekend.

@grammie2 thank u for reaching out for some news re @beekaycro24. Sending her warmth and positive energy to heal.

@grammie2 thank you so much for your update! I really hope that very soon our friend will be here telling us what happened, already healthy again!

Well, the placement of my port was traumatic (I was awake), but fortunately the removal was very simple. Recovery hasn’t been very easy because my scar is in a spot where just moving my arm affects it. Just last night, my arm "slipped" twice and both times it hurt a lot. I just hope everything is okay with the scar — I’ll only remove the dressing on Friday.

@grammie2 they never drew blood from my port! On my chemo days, the first thing I did was have blood drawn (from my arm), wait an hour for the results, and then have chemo through the port. I was always poked twice. My port was only ever used for chemotherapy, since Herceptin is administered by injection. Every 6 weeks I was pricked in the port just for cleaning, so that’s why I asked to have it removed. It was only causing me pain at this point. I really hope I never need one again in my life. Me and all of you!

I truly hope that we all heal completely and forever. Wishing you all the very best!

Hello all, continuing to pray for @beekaycro24. Had my port removed today and the lidocaine is starting to wear off and I am mildly uncomfortable. I have internal stitches with glue over it, no dressing. The colors I have going on are interesting to say the least. I am trying to keep ahead of discomfort with Tylenol.

I was mostly awake, they even showed me the port after removal but I barely recall that. Had and all female team working on me. Not a bad experience at all.

Hope all are doing great, thanks @grammie2 for updating us on Berta.

@djschmidt1 I'm so glad that your port is also finally out. Now the most annoying part is sleeping. I'm incapable of sleeping on my back, and it's been a bit difficult, but starting next Saturday I’ll be able to sleep normally again. A week after the port removal, I started applying scar cream. The nurses said it’s really important to try to reduce the scarring. I also had internal stitches and glue, just like you, but they still put steri-strips on top because my port was very close to the shoulder, and the scar could open up due to shoulder/arm movement. All went good, so far ☺️ I only took paracetamol on the first day, but after that I didn’t have any more pain. Wishing you a quick recovery!

@grammie2 thank you for the update! I really can't wait for Berta to be healthy again and come back and join our chats. It won’t be much longer now 🙏

Hugs to all of you!

Happy weekend my fellow warriors! I had an update today stating they are working to get beekaycro moved to a rehab facility. This sounds really encouraging!! I'm guessing she was able to become vent free. The last I heard she still has a trach with bipap attached (they were doing short breaks allowing independent breathing), and they were adding a stomach feeding tube. A comment that she would need to learn to swallow again so that is part of her therapy. Pray she gets strong enough that the feeding tube can be removed! I'm sure it is so frustrating for her not to be able to communicate verbally, and I understand not able to use her hands at this point. I cannot wait for her to see all of us praying for and rooting for her to get better!!

Hope everyone is doing well!!! Hugs ladies!

@beekaycro24 we are all rooting for u to bounce back quickly! 🙏

hi @catarina_fm thank you for asking. Here are my experiences thus far:

My scar is healing, discomfort is minimal; I look forward to being able to swim again.
I have had breast pain consistently and my ONC said at my 6 month follow up that it is “normal”. I am a year out from surgery and still tender sometimes, but it is lots better than it was, so apparently it does subside. I have very minimal reminders of treatment…my hair is still different texture and my scalp gets tender sometimes, but my hair is fully grown in.

I've had my 2nd Enhertu/Perjeta infusion. The nausea and stomach pain are tough. Neither zofran nor compazine are helping. I'm getting a Udenyca injection today, which I don't want. Good news is that my tumor markers have really plummeted, CA27-29 is back in the normal range.

@chocomousse I ditto djschmidt1!! But awesome news about your tumor marker!! The SE's stink, but at least it seems the treatment is doing it's job in fighting the cancer!!!

I haven't had an update recently on beekaycro. Last was that she was improving at the rehab facility. Keep the prayers going for her!!

@grammie2 thank u for berta's update. Definitely will be thinking of her 🙏. Atlanta has some excellent health care which I'm sure can only help!

@catarina_fm so glad you were able to go on a trip! I hope you had a great time!!

Yes, I am really worried about our friend!! I hope I get an update soon!

I hope you can get some answers about your hair! Let us know what they tell you. I don't have any particular bald spots, but it sure is super thin on top. And still very slow growing. I'm now 6 weeks post my last Phesgo injection, so hoping things will soon start to change. My MO said I could use Minoxodil, but I am not ready to commit to that just yet. Going to give it a few more weeks to let the Phesgo get out of my body.

I'm starting to have a little more energy and feel more like myself. Still struggling with fluid retention but it seems to be less.

Hello ladies!

I had my appointment with the oncologist yesterday. Everything was fine — the tumor marker remains low and stable, and the doctor said my bloodwork is perfect; she even printed it out for me to take home 🤩 I no longer have any nutritional deficiencies, everything looks great. My heart is still strong. It’s always such a relief.

My next appointment is in 3 months, which is when I’ll finish Herceptin. After that appointment, I’ll start having check-ups every 2 months for a while; as I understood it, that’s because the risk of recurrence is higher once I stop taking Herceptin. I hope everything keeps going well for all of us!

As for my hair, the doctor did say it’s indeed growing very slowly, and I do have areas with low density (on the crown of my head). However, she wants to wait another 3 months to see whether this is still my body recovering from the toxicity or if it’s actually a real problem. According to my oncologist, I can’t really compare myself to most people, because I had AC chemo plus dose-dense docetaxel (which you call Taxotere), and that’s the most aggressive regimen there is for hair and eyebrows. Based on the usual pattern, at this point (8 months post-chemo — already??) I should have more than 3 inches of growth, but I have about 1, and it’s thin. So we’ll wait and see.

@grammie2 I’m sure the fluid retention will improve now that you’ve finished Phesgo, but we need to be patient because the body can take quite a while to get back to normal. Little by little you’ll start seeing improvements! As for minoxidil, my oncologist says it doesn’t work miracles either and that it’s a bit too harsh for now. Basically, she wants me to wait a bit longer. But of course, we always want to solve problems as quickly as possible. I’ve also read conflicting things about minoxidil — some people say it really works, and others say they don’t see much improvement. If I were you, I’d also wait a bit longer to let your body detox.