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ER-, PR-, Her2+ Roll call

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Comments

  • grammie2
    grammie2 Member Posts: 102
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    Should I be concerned that I’m getting magnesium for the third time since chemo?

  • bailey.boo
    bailey.boo Member Posts: 131
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    thanks, @aborayis

    Do you have a place you’d recommend purchasing the compression/cold mitts/socks from? All that ice, I’m going to need to throw some blankets into my shopping cart too! 😁 And break out a beach bag to haul it all in.

  • maggiehopley
    maggiehopley Member Posts: 116
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    I bought the NatraCure brand from Amazon. Wear thin socks and thin cotton gloves so you don't get frostbite. I bought my gloves in the pharmacy section at Walgreens.

  • bailey.boo
    bailey.boo Member Posts: 131
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    Thank you!!! That will be very doable fast.
    I just made an appt to get my port placed on Friday. They aren’t messing around with “ASAP.” Not much time for panicking— don’t think, just do-do-do, go-go-go. I will definitely protect my hands and feet from the start. The side effects that can happen with them do not sound pleasant at all.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @grammie2 I forgot to respond to your question but I had an almost immediate response to chemo. I could not feel my lump after two. My oncologist told me after three it just felt like dense tissue now. An early response is most desired.

  • snm
    snm Member Posts: 95
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    So glad to hear that chemo has a great chance of shrinking the tumor! Yeah the surgery decision is a tough one- BMX vs lumpectomy vs single mastectomy etc.

    For me I had a very large DCIS area involving nipple on left- so my only option was for mastectomy. My margins from the DCIS were positive after the surgery bc involved area was large and I had small breasts. I decided to get prophy mastectomy on the other side- didn't want to get mammograms and anxiety associated w recurrence fear, plus I wanted symmetry though I miss not having breast sensation. 1.3 mm invasive focus was found but my MO did not recommend chemo or radiation..so just have to wait it out and watch for any signs of recurrence. After BMX I was told that I have a 5% chance for recurrence which is great but I still worry.

  • snm
    snm Member Posts: 95
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    I didn't qualify for diep flap; so went w implants. Planning on getting 3D nipples tattood this July though I'm getting used to the Barbie boobies!

  • grammie2
    grammie2 Member Posts: 102
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    I think I will wait until after #2…..still too chicken. I know my oncologist will do several things at #3 so guessing this will be one of those. Thanks for the info!!

  • bailey.boo
    bailey.boo Member Posts: 131
    edited May 1
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    Hi all! Happy hump day! So does this sound pretty expected? It seems on the level based on what I’ve read here. Tomorrow, I have an echo appt and, on Friday, I’m scheduled for port placement. After the echo, I can start chemo right away, although the exact timing is still up in the air. We discussed neoadjuvant therapy before surgery, and I’m starting an antineoplastic chemo regimen consisting of Taxol, Carboplatin, Herceptin, and Perjeta. The second two (for the HER2+ component) will be administered as a shot, w/infusion sessions available if needed due to tolerability issues. The duration for all 4 chemos together is six cycles, once every three weeks. I’d have regular evals to monitor blood counts and adjust chemo doses accordingly, etc. I’d have follow-up appts every three months for examination and blood work to monitor tumor markers, vitamin levels, and overall health. This is followed by my double mastectomy, radiation, and, all the while, the continued targeted shots therapy for at least one year.

    I feel better with a clear roadmap for my treatment journey. My inner control freak loves a good plan. It’s happening so fast my brain isn’t totally keeping up. In a way, that’s a relief. And tells me I’m already trusting my team on some level. I just realllly also want to get the MRI and PET scan over with and hear it’s not creeping everywhere. That’s on Monday (MRI) and then the week after (PET). Also, my reconstruction surgeon is calling for an appt already.

  • aborayis
    aborayis Member Posts: 317
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    @bailey.boo - Ailaka Medical Arm Compression Sleeves on Amazon, and surgical gloves two sizes smaller than you’d wear (smallest is size 5). I ordered from a company called Medex. Physics Gear compression socks also from Amazon.

    Yeah, I had a cooler bag on wheels and backpack I would bring with me. And would joke I was moving in. It will feel great when you don’t have to bring all the gear for the last step of targeted therapy. Your plan is very similar to mine, except my MO ordered all HCTP to be delivered by infusion, and I ended up not needing radiation.

  • bailey.boo
    bailey.boo Member Posts: 131
    edited May 2
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    Thank you, @aborayis. You are all helping me so much, and I’m so thankful for it! Have the ice mitts and booties, ordered the compression stuffs that should be here tomorrow, and dug out my mom’s roll-y bag and soft cooler from storage. They are animal print 😁 We lost her to multiple myeloma in ‘19. I’m carrying the torch for her, fighting the good fight. Using her things is a little weird but feels a little like my Rambo bandana.

  • snm
    snm Member Posts: 95
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    @bailey.boo luv the animal print! Your mom had good taste! Sending you good vibes!

  • grammie2
    grammie2 Member Posts: 102
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    Hey all. First chemo was 4/18 and things went fairly decent. But I've had to get magnesium twice a week since and next chemo is next Thursday. They acted like it was common and no big deal, but said it is hard to get magnesium to build back up. Little discouraged. Finally went up 1 yesterday. Anyone else have this issue? Hair is coming out by the handfuls so gonna shave this weekend. Any recommendations for lotion on the scalp? Thanks people!!!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    Based on my research I’m low on magnesium but they don’t check for it at my cancer center. You will probably feel way better if they can help you build it up. @grammie2

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 thanks! They didn't check it prior to chemo so my magnesium could have been low before. Who knows. But I did have some ankle swelling Wednesday after the infusion the day before. So when I went yesterday, they reduced the saline amount when they gave the magnesium to me. I told them that I'm not having any D or vomiting and that I am staying well hydrated. I think my body was getting overloaded with fluid. So yesterday I cut back on my water intake, but ankles still are getting puffy today.

  • bailey.boo
    bailey.boo Member Posts: 131
    edited May 3
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    All ported up over here. They put in a Bard single. My surgeon was in a meeting with drug reps forever, and my nurse got tangled up in my IV tubing and fell. Busted her head open on the tray and then the floor. All slow motion and I’m all hooked up on the bed and couldn’t move to help. Blood everywhere. Whole forehead gashed open and broken eyeglasses. Quite a morning. Nurse Becca is ok and was headed to urgent care last I saw. Not too bad, other than the series of unfortunate events. Swallowing is tricky, but nothing will keep me from my morning coffee, despite it being afternoon 😊

  • bailey.boo
    bailey.boo Member Posts: 131
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    Can you take magnesium supplements? How about tolerating food yet? Get you some dark leafy greens like spinach and kale, nuts and seeds (especially almonds, cashews, and pumpkin seeds), and I think whole grains like brown rice and quinoa (yum!), legumes like beans and lentils (red lentils are full of iron as a bonus), and some fish like salmon and mackerel.

  • bailey.boo
    bailey.boo Member Posts: 131
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    I’m so sorry about the hair already Grammie! 😔

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo I don't think she wants me to do any supplements. I did buy a Gatorade Electrolyte today and it has magnesium. And love all the foods you mentioned but everyone has warned me about eating raw veggies like lettuce, kale, spinach because of bacteria that normal bodies can tolerate, but chemo bodies can't. I love salads and am missing those so if anyone can correct me on that, please do!!

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo I meant to tell you about Lactoferrin. It was on the list of helpful items for the taste/metal mouth issue. So far it is working for me. There was a day or so where things didn't have much of a taste (like when you have a cold), but other than that all is good with my tastebuds!

  • bailey.boo
    bailey.boo Member Posts: 131
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    oh no. I hope they can get your levels all good by your 2nd chemo session. I’ve switched to all salads to cut that sugar out, but I see this is the wrong answer soon! I wonder if cooked is ok? I went on Oceanofpdf dot com (tip of the day— if you’ve never heard of this, check it out!) and downloaded every cancer and cancer cookbook they had on my list.

    I just called and got a stat put on my Echo results and scheduled my 1st chemo day as a tentatively on Tuesday. I’m chomping at the bit to start and halt this evil in its tracks. It keeps me up at night, worrying it’s spreading.

  • bailey.boo
    bailey.boo Member Posts: 131
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    thank you!!!! 💕 i am writing it on my questions list for the docs now!

  • grammie2
    grammie2 Member Posts: 102
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    Oh my what a time!!! My port is Bard as well. Power port I think. I kept thinking my skin looked bruised where the port is (weeks after the placement). Come to find out, the port color is purple. Why on earth would the company think a device planted just below the skin should be purple?? LOL. Glad you are doing ok!!

  • bailey.boo
    bailey.boo Member Posts: 131
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    oh god. THAKK YOU for that heads up! I’m allergic to vicryl stitches so they used monocryl. Fingers crossed I’m not allergic to the port or the stitches and have to delay chemo on Tuesday. I would’ve been even more worried if I saw bright purple shining through!!

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo I worried my husband to death because I thought I had a clot or something LOLOL. I will say that the port for chemo has been a blessing so far. It is so easy for them to access and even without the numbing cream they gave me, it is just a small stick when they do it. I had always turned my head when they accessed it, but happen to see her take it out yesterday. I had to laugh because it reminded me of someone pulling out a thumbtack.

  • bailey.boo
    bailey.boo Member Posts: 131
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    OMG— too funny!! And great to hear it’s not so bad— thank you for that info!
    My oldest had a port. I had… I think it was called emla cream… to rub on it before his appts? We are talking ‘95-‘99, so I can barely remember. The port left such a scar when they removed it. But he was little when he got it. He tried to hide the huge eagle tattoo he got overtop of it from me 😁 I don’t know about clavicle tattoos for me! lol! But maybe scaring won’t be so bad because I’m grown. Really, I don’t even care about scars and hair. I just want the cancer out of me. It is not welcome here and does not belong!

  • aborayis
    aborayis Member Posts: 317
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    Happy Mother’s Day to all the mothers in this group. How is everyone doing? I had my first visit to my hairstylist since my diagnosis in July of last year. Half my hair is long and half is about three inches. She dyed away my grays and changed my part to cover the short hairs. It’s not perfect, but wow, it feels good. Also scheduled nipple reconstruction in September followed by tattooing. @snm, you’re scheduled for tattooing in July? It’s coming up!

  • snm
    snm Member Posts: 95
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    @aborayis happy mother's day! Yes getting hair done always picks me up too! I didn't get nipple reconstruction as I didn't want another surgery but I've heard it looks good! I will be getting 3D nipple tattoo in July - hoping that will look good without much fuss. My oncologist told me to go ahead with it despite not knowing about what future holds. She was excited to hear about it and even asked if I would get a decorative tattoo! I think I'll start with nipples and then look into decorative if I handle it all ok.

  • aborayis
    aborayis Member Posts: 317
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    Well, ugh. I’ve just been diagnosed with Graves Disease. I think this is why I’ve been so tired, weak and shaky for the past few months. I’ve been tachycardic too but we’ve been chalking that up to stress about cancer and treatment. Getting started on meds, and I should hopefully be feeling a whole bunch better. I’m happy to know what’s been going on and excited to feel better!

  • bailey.boo
    bailey.boo Member Posts: 131
    edited May 15
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    Oh, I’m so glad they figured it out and that you can get meds to help it! I have the opposite— Hashimotoes. But when it went into toxicosis before thyroid cancer in 2010, it spiked and plummeted my adrenals with it. Those feelings were no fun. I take Armour and Tirosint for mine— me and synthetic hormones have never played well together. It helps greatly! I hope you feel better soon! ❤️🧸