TRIPLE POSITIVE GROUP

1118511861188119011911336

Comments

  • specialk
    specialk Member Posts: 9,261

    lg - yay! Can’t imagine there is a problem with switching the infusion day since you’re going from weekly to 21 day infusions

  • Photogirl81
    Photogirl81 Member Posts: 35

    hello Ladies,

    I wanna share a bit about our little getaway trip: june 20th was the 1st anniversary of my last chemo. And I finally got back to one of my favourite places on Earth for a mini holiday: Slovenia, Triglave National Park. And I went whitewater rafting. :)

    I was in full strength (at least it felt like that), could paddle as well as I used to. My husband wanted me not to paddle on the left (operated) side /btw, that's how I like to paddle/. But finally our tour guide decided our post and I got the left side. And I had no troubles, no pain, no swelling, nothing. Oh, and I am not the sporty type... I am writing all this down, to show all you amazing ladies who are currently doing treatment, that a year from now you'll have your life completely back and you'll be able to do anything you want. :)

    (Actually, strength-wise I could have done this months ago, just did not have the chance to go.)

    And finally I decided to share two pictures with you, hope you don't mind. Love you all, and can't wait to hear your stories from after you're done!

    Hugs,

    Photogirlimage


    image



  • PhoenixCruiser
    PhoenixCruiser Member Posts: 57

    My date has changed twice now. I started on Mondays and after Memorial Day decided to switch to Wednesday due to the holiday. Now the 4th is on Wednesday so I'm switching to Thursdays. Your insurance probably won't let you move up your next treatment but they will allow you to push it back.

  • PhoenixCruiser
    PhoenixCruiser Member Posts: 57

    Photogirl, your trip sounds fantastic, great pictures!


    NYMinute, I used CyroMax reusable cold packs for my hands and feet. Got them on Amazon.

  • tld2017
    tld2017 Member Posts: 147

    NYMinute, I used Penguin cold caps and had great results. I am 4 weeks PFC and still shedding, especially on wash days, but it is getting better. No one can tell that I've lost any hair but, of course, I can! I would say I've lost about 20% but I started out with a ton of hair so there are no bald spots, just areas where I can tell that it is thinner.

    Here are the links to what I used on my hands and feet. Not gonna lie - these were harder for me than the cold cap. But, that being said, I think it worked. I did get some neuropathy in my hands and the doctor put me on Gabapentin, which worked very well. I have not felt any pins or needles for quite some time. They are going to wean me off of it here in the next few weeks. My nails did very well. No discoloration, no loose nails. However, I did feel some discomfort in my nails during chemo. I never pulled the cap off my head during chemo, but I did indeed pull the mitts off my hands on occasion, when the cold just overwhelmed me. I took Xanax and Motrin before every chemo to offset the discomfort. All in all, I'm glad that I did all of it: caps, mitts, and socks!

    https://www.amazon.com/gp/product/B003L4WOKG/ref=oh_aui_search_detailpage?ie=UTF8&th=1

    https://www.amazon.com/gp/product/B000H6G55G/ref=oh_aui_search_detailpage?ie=UTF8&psc=1


  • ingerp
    ingerp Member Posts: 1,515

    Photogirl you are beautiful!! Thanks so much for the inspiring story—it does really help to see women who are out the other side.

  • Taco1946
    Taco1946 Member Posts: 630

    Great pics, photo girl! Thanks for sharing them.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138

    I got my port taken out after radiation #6 today. It's been bothering me for months, and the onc nurses sortof dismissed it, "nobody ever is bothered by a port." Turns out the little bugger was infected along the catheter section- no wonder it bothered my neck so much. Harrumph. So a couple stitches later I am port-free but no antibiotics necessary since my WBC counts are back up. Just another insult to my body, right?

  • deni1661
    deni1661 Member Posts: 425
    Photogirl thanks so much for sharing your trip with us and the wonderful pictures! You are so beautiful. I think it’s inspiring to share these moments so those who are newly diagnosed, still in treatment or post treatment can see there are good days ahead and life can be great after cancer.

    Homemade thank God you persisted and got the port removed! The infection certainly does suck but good news you don’t need antibiotics. I hope you are on the mend and feeling better soon!
  • coachvicky
    coachvicky Member Posts: 984

    Photogirl ... What great pictures. You look wonderful!

    Vicky


  • specialk
    specialk Member Posts: 9,261

    photo - beautiful pics and beautiful you! Glad you had an adventure!

    homemade - eeeks on the port infection, glad you got it out!

  • LTWJ
    LTWJ Member Posts: 118

    I have my last Herceptin on July 30 and I thought my new insurance ded started again Aug 1, so port removal, echo and any other test would all cost again but I just found out it starts Sept 1. Last year I had chemo on Sept 1 and they wanted The whole ded $6,500 that day. Glad I have a month to fill with apts now, still free.

    My port has been clearly visible through my skin for about 2 months now. No pain just bulging like it's about to pop out itself. My breast dr said they just remove it in tne office, no surgery or anything. Is that right?

    Too hot here in TX to do much outside, hit 107, heat index 112 yesterday. Get to watch fireworks to night and then a parade tomorrow. Sooooo much better than last summer!

  • specialk
    specialk Member Posts: 9,261

    ltwj - many have had their ports removed in the surgeon's office - using a local anesthetic, some by interventional radiology in a quick outpatient procedure, mine was removed in conjunction with a scheduled reconstruction surgery by my plastic surgeon - which I was happy about because I knew she would leave a pretty incision. My port was installed during mastectomy under the skin flap before the expander was put in so I had no scar initially. Yay for the upcoming last Herceptin!

  • bareclaws
    bareclaws Member Posts: 246

    Photogirl, you rock! My youngest kid is planning a trip to Slovenia next summer to visit a friend and run and an ultra. I’ll be sharing the info about the the park you visited.

  • coachvicky
    coachvicky Member Posts: 984

    LTWJ

    My Breast Surgeon put in my port as a separate operation. He removed it in his office and it was a piece of cake. Thanks to a cream SpecialK recommended my scar is barely visible. LTWJ ... After all you have endured, trust me ... port removal is nothing.

    I was surprised to see a scar hole at my neck but it is fading too.

    About the nurse that said something like no one has problems with a port ... I felt mine everyday. Not unbearable pain but I always felt it. I still find myself getting PO'd when I hear someone claim X and they have never walked our paths.

    Here is what I did with my port:

    image

  • Tresjoli2
    Tresjoli2 Member Posts: 579

    coach I have the hole in my neck too. I hate it. They wouldnt let me keep my port :-(

  • coachvicky
    coachvicky Member Posts: 984

    Tresjoli2 ... I got some strange looks when I asked for the port. I reminded the nurse who paid for it. My Breast Surgeon was cool about it.

    I guess I forgot about the wire in the neck.

    Vicky


  • hapa
    hapa Member Posts: 613

    It never occurred to me to ask to keep my port, but I think I will. My plan is to sprinkle some glitter on it, loop the catheter, and hang it on my Christmas tree. Print "2018" on the silicone part and make it a souvenir ornament.

    I'm kidding. Maybe.

  • Photogirl81
    Photogirl81 Member Posts: 35

    oh Ladies,

    Thank you all for your kind words. You made my day and you also made me blush. :) I honestly hope that the pics will help a few of you really believe that "all this too shall pass".

    Plus, for those who are eager to know how fast hair grows back (cannot even tell how much I have tried to google that), well, mine has always been a slow grower. Between 1/3 and 1/2 inch per month. (About 1 centimeter) You see in the photo how that looks now... :)

    Hugs,

    Photogirl


  • cowgirl13
    cowgirl13 Member Posts: 782

    Re the port hole in the neck--would my port have been connected somehow in my neck? Creeps me out but I'd love to find out. Thanks!

    Photogirl, you look marvelous!

  • moodyblues
    moodyblues Member Posts: 393

    Ingerp, I would go ahead and plan, I did so well on Herceptin and never cancelled anything around that time.  Have fun!


  • moodyblues
    moodyblues Member Posts: 393

    Photogirl, you look amazing!  I am so glad that you shared the picture with us.

  • Tresjoli2
    Tresjoli2 Member Posts: 579

    my understanding is all ports need to incision in the neck...not sure why but something about how they access the vein to your heart.

    I have no scar from my lumpectomy...zero...you'd never know. And no scar.from my port. But my sentinel node scar is vicious and then I have the hole in my neck scar which drives me crazy cause its gross and visible.

  • specialk
    specialk Member Posts: 9,261

    I have no neck incision, but I’m thinking it’s because all the vasculaturewas accessible to my surgeon during the mastectomy and he went under to thread the tubing. I went with a friend to her consult with another breast surgeon at the NCI center where my surgeon had been the chief of surgery. We briefly discussed my surgery and he specifically asked whether I had my port placed that way - he said my surgeon had trained him but he felt uncomfortable doing it so he placed ports during mastectomy with external incisions. I thought that was interesting.

  • bareclaws
    bareclaws Member Posts: 246

    I had port placed and sentinel node removed at the same time, before chemo and surgery and nowhere near my neck. I didn’t know until reading this thread that anyone had them there!I asked surgeon to make it invisible while wearing a tank top and she complied. Even so I was glad to see it gone after 18 months.

  • bellasmomtoo
    bellasmomtoo Member Posts: 93

    My port wasn't in my neck either. My surgery to insert my port was done at a hospital and she just did the port insertion -- no other procedures were done. And when it came time to remove it, my surgeon removed it in her office -- I didn't have to go to the hospital. I still have a scar from the port, but that's only on my upper chest.

  • shelabela
    shelabela Member Posts: 327

    So I am currently waiting for my MO to call me back. The last few days I've had the most horrible cramps. I am officially in menopause according to my drs. And bloodwork. Haven't had a period since February of 2017. Not even spotting. I am freaking out.

  • suburbs
    suburbs Member Posts: 398

    Hey shelabela, hang in there. I hear you. Ihope you get a call soon. Keep us posted.

  • deni1661
    deni1661 Member Posts: 425
    Hey Shelabela - hang in there. Saying prayers everything is OK...keep us posted on what the doc says. Hope you feel better soon
  • jstarling
    jstarling Member Posts: 137

    I had my delayed 5th chemo yesterday without the Herceptin. I am to have another Echocardiogram the day before my last chemo so we can hopefully resume the Herceptin if my flow rate goes back up enough. Now just wait to feel crummy for awhile. We went for a walk this morning and will have my Xerxio shot and take a nap. Maybe we’ll watch fireworks from the car tonight. I love Independence Day