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Treatment Zoom Meetup (Tuesdays) place to keep chatting

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Comments

  • Teri23
    Teri23 Member Posts: 8
    edited March 2022

    I just got the results back from the retesting of my tumor for HER2 status, and unfortunately, it's positive. It was initially equivocal, then the FISH test showed negative, but my surgeon suggested getting it redone. So here we are. I haven't heard from my medical team yet--the results just showed up in my chart, but it's looking like I might need even more additional treatment. I am pretty bummed out at this prospect.

  • moderators
    moderators Posts: 8,633
    edited March 2022

    teriryan2 We'll help you. We know how difficult this has become.

  • KLinDallas
    KLinDallas Member Posts: 14
    edited March 2022

    Hi Teri,

    (Karyl here.) 've missed the Tuesday Zoom calls as I felt that I was taking up space/time that was needed for newbies in treatment. But, I miss seeing you and everyone! So, I wanted to reach out. I've also had issues with the new updated website, and I couldn't get in to say that I wanted to keep in touch with all. Hope that you are doing well and progressing thru treatment.


  • KLinDallas
    KLinDallas Member Posts: 14
    edited March 2022

    Teri,

    Oh no! I just posted and then your latest post popped up. So very sorry that you've received some additional news that may add to the length of your recovery. Please focus on how far you've come already. This is a speed bump, fer sure, but you've been thru these ups and downs. You will get beyond this bit of news as well. I have you in my prayers and know that God already knows how to get you thru this too. Remember my mantras that got me thru chemo? Now taped to my computer screen.....I have no control. This is temporary. Stay in the moment.

    Big hug to you!

  • Teri23
    Teri23 Member Posts: 8
    edited March 2022

    Thank you both! I will be in research mode this morning. Understanding more usually helps me process.

    @klindallas, we miss you on the Zoom calls! There's a new Zoom group now too. It's for people beyond active treatment. I'm not remembering where you are in your journey, but you might like to join there. Carolyn is doing that now, as she updated us this week. Here's the link, in case you are interested: Bonded by Breast Cancer Meetup Registration

    I     think everyone is still welcome to join the original group too. I look forward to seeing your lovely face again soon, but in the meantime, I'm glad we are connected here.

  • KLinDallas
    KLinDallas Member Posts: 14
    edited April 2022

    Hi Teri,

    I miss you too, and I am so glad that I was able to find you again. The updated version is driving me a bit wacky with the glitches. Trying to be patient as I know that they will all be remedied in due course. Maybe that's another thought to keep in mind for you as well. Try to remain patient as you entangle these health glitches; I know that you will turn the corner soon! Keep the faith! I am always in your corner. :-)

  • KLinDallas
    KLinDallas Member Posts: 14
    edited April 2022

    Carolyn,

    How do I find you again??????

  • Teri23
    Teri23 Member Posts: 8
    edited April 2022

    Sorry I missed you all this week. I had my radiology simulation. I will see you next week, but that might be the last time for awhile. I need to try to get to my radiation treatments early in the day to avoid traffic.

    My medical oncologist wanted my new HER2 testing to be reevaluated, so no final news on that yet.

  • pbchick
    pbchick Member Posts: 11
    edited April 2022

    Teri,

    I'm so sad to read this news, but I will be sending supportive thoughts your way as always. Sorry I missed group this week, but my brother came to visit me and his time was limited.

    @klindallas Karyl,

    I've missed you in group. I have lost quite a bit of my hair, but it's been falling out pretty evenly so most people can't tell. My hairline is crazy, but I wear headbands to cover that. I'm still doing the cold capping as I know that it will protect my follicles. I have thought about your advice and support in this journey. Thank you.

    To everyone else in the group, I hope your week was as good as it could be under the circumstances that we all find ourselves in. Much love and support to everyone. XOXO

    Mindy

  • KLinDallas
    KLinDallas Member Posts: 14
    edited April 2022

    Hi Mindy,

    Thank you for the update. I've missed you and our Tuesday group too! Still trying to navigate thru the new website, and I can't seem to find our Zoom Forum. Delighted that you mentioned me, so that I got a message!

    I'm glad that you've been doing the cold capping. I know that it is sooo difficult to do on top of treatment, but I'm sure that you will be pleased in the long run. I am trying to return to some normalcy (although that will be a different version of my pre BC life, I'm sure). Every little teeny bit of hair that you are able to keep will reinforce the knowledge that we will find a part of the before on this long journey. We may look different on the outside (and we have certainly changed on the inside), but I am confident that we'll get thru this journey with the support of one another.

    Praying for you and each and everyone of the remarkable women that I've met in our weekly Zoom meetings. Not sure how to stay in touch, and I'm having so much difficulty navigating the new website. Another opportunity to practice patience!

    XOXO

    Karyl

  • moderators
    moderators Posts: 8,633
    edited April 2022

    Dear klindallas,

    Here is a link to register for the weekly Tuesday In Treatment Zoom Meet up - https://breastcancer-org.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC and here is a link to the Bonded by Breast Cancer group for those who have finished treatment - https://breastcancer-org.zoom.us/meeting/register/tZIuduGspz0rG93Jrg16Zi1NQrja-insoVJm

    We are sorry for the glitches.

    The Mods

  • pbchick
    pbchick Member Posts: 11
    edited May 2022

    Hi everyone. Thought of a question after group. Is anyone using an app to track their hot flashes and/or other menopausal symptoms? My sexual health cancer doctor wants me to track my hot flashes and there are a bunch of apps. I was hoping someone would have used one like Teri had used the Lose It app.

  • katg
    katg Member Posts: 250
    edited May 2022

    I everyone. I had menopause 21 years ago at 41 and hot flashes have never really been part of my life.

    I am happy to have joined at lease before the end. I am past the chemo, not because i did not need more, but because of my body's reaction to it. We cannot know how any treatment will work for us until we get it. Then we evaluate the symptoms and see if they are manageable. I know that whenever i had a symptom, I told someone. Mostly the medical team, but also my sister and 2 good friends, who recognized i needed to call triage nurses to tell them. Twice i needed help, and both required blood transfusions. I also had a urinary infection after my surgery i never expected. A catheter inserted during surgery puts an item that could have germs in you. That was said by my triage nurse as i got the prescription to treat it from an over the phone consult. My sister told me my symptoms sounded like an infection.

    I will likely be on more infusions other than Perjeta and Herceptin. Those are every 3 weeks for one year. I have had 3. Letrozole, also known as Femara for 5 years. What i know for sure, is new treatments are coming down the line all the time. Clinical trials are for all of us. I am grateful for the willingness of all of them. I have been a platelet donor for 25 years. Every time i gave, every 2-3 weeks, i gave 3 units. 3 people got them. I often got to see where my donation went. Often out of state often and local.

    When i think of my treatments, i will do any infusion or pill to assist my recovery. I know so far nothing i have taken will stop me from donating again. A year after treatments end.

    My MO wrote in her very first treatment order that the end goal is to kill the cancer. BRCA2- HER2+. Two aggressive pieces of my puzzle I wish i did not have. I do.

    If you do not feel cared for by a medical team, please get a 2nd opinion. I loved my breast surgeon and plastic surgeon for my one side. The breast surgeon is joining a new department with her other hospital down the freeway. A great opportunity. I told her i want to stay with her for the breast removal. I want the same team. I am hoping August will be it. My blood clot is the issue, and both surgeons know. My health is 1st.

    I believe these forums are the extra help we all need. Until I feel my expander in myleft boob, sometimes i can forget i do have breast cancer. The threat is not gone.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited June 2022

    Tues peeps,

    Where are you?

    This is a great place to post updates!

    Hope to hear from you!

  • moderators
    moderators Posts: 8,633
    edited June 2022

    Agree! We'll reiterate on Tuesday!

  • K-Gobby
    K-Gobby Member Posts: 144
    edited July 2022

    I all. Put this in your favorites.

    I am updating. I got to see my breast surgeon Friday. He had cancelations so I was called to come early and got more time. He gave me good marks. I am healing. He recommends braless a bit. He also said because my clot is "deep vein thrombosis" 6 months at least. I must wait till mid October for an update.

    August 1st I visit my breast surgeon to check in at her new location. Visiting my friend who has been at COH for 6 years, humbled me. We share this road with so many.

  • moderators
    moderators Posts: 8,633
    edited July 2022

    Thank you for the update k-gobby. We are glad the doctor gave you good marks! Sorry about the ongoing issues with the clot. Glad you were able to get some time in with your friend.

  • laback31
    laback31 Member Posts: 6
    edited September 2022

    hi! Checking in to see who’s on here from zoom meetup! I’ve had some chaos going on, tho I’m doing fine, I’ve missed you! It feels like forever

    —-Lauren

  • K-Gobby
    K-Gobby Member Posts: 144
    edited September 2022

    Lauren, seems in person peeps do not come online. I am having troubles getting online. Back to work and not in an office of my own, leaves privacy still something to work on.

    Are you done with chemo?

  • collijr
    collijr Member Posts: 18
    edited December 2022

    Hoping everyone has a terrific holiday! I'll miss you all next week.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited January 2023

    Hi all,


    Looks like little traffic from Tuesday still.

    I am reporting that I had my surgery. Right breast removed, expander out on the other side and implants in. I think my last surgery was worse. Mid section ovary and fallopian tubes was rougher. Like doing a 1000 sit ips a day.

    My only side effects are some Grey tinged breasts and a drain not working on the right side. Not oozing or red so triage people said to report if I have a fever or anything worsens to call. My other drain is working fine. I hope to see all in the next zoom meeting.

    Happy new year all. I think we are ready for 2023.

    Kathy g


  • collijr
    collijr Member Posts: 18
    edited January 2023

    Great news Kathleen. I hope you continue to heal. I’ll keep my fingers crossed no infection and your drain starts working. Happy new year!

  • jakeinva
    jakeinva Member Posts: 19
    edited January 2023

    Wondering if anyone has experience getting a wig aka "cranial prosthesis" through Medicare. My doctor tells me it has been submitted but something is keeping it from getting to Medicare. Any ideas? I keep pestering the doc admin and they keep trying, but not having any luck (since July 22). TIA Johnna. update: had breast x-plant re-implanted yesterday and doing well. happy girl!

  • moderators
    moderators Posts: 8,633
    edited January 2023

    Hi Johnna! We're so very happy to hear your re-implant went well! Looking forward to hearing about it in group. Good thoughts your way for speedy recovery Medicating.

    We wanted to also suggest you ask your question about wigs and insurance by starting a thread in the Employment, Insurance, and Other Financial Issues forum, where others with some experience on this can see your question and weigh in. It's easy to do: just click the link to the forum, select Start a New Topic, fill out the Subject (something specific like "Experiences with Wigs and Medicare?") and fill out the Body of the post, and click Submit. Don't forget to select the thread as a Favorite, so you can get notifications when someone responds to your post!

    We hope this helps and that you get some answers soon. Looking forward to seeing you in group!

    --The Mods

  • jakeinva
    jakeinva Member Posts: 19
    edited January 2023

    thank you - think i did it right. didn't know about favorites and hoping that works too. Is there a Friday call forum? J

  • moderators
    moderators Posts: 8,633
    edited January 2023

    Jakeinva, are you asking about the Bonded by Breast Cancer group that meets on Fridays? We don't currently have a forum thread for that group (many of the members who attend are active and post in other Bonded or Life After Breast Cancer threads), but we'd be happy to create one!

  • K-Gobby
    K-Gobby Member Posts: 144
    edited January 2023

    HI ALL!

    Kathy here. Last thursday at my first preop, my favorite Dr noted my drain and swollen breast and text the pictures of both to my plastics Dr I was going to next. The plastics Dr is the one who inserted the drains. This Dr was able to tell me my removed breast and parts were clear of and cancer or spread. The original lefts scar across the stitched area was also cleared for cancer. Yahoo!!!!! I am barbie now, but clear of the body parts Brca 2 loves. This surgeon has noted that I have breast tissue, just a bit by my port. Yep. The port remains for my herceptin perjeta infusions.

    By arrival at next Dr visit, I had an ultrasound done, and confirmation my my Dr at the airport telling the Dr on call here, that I needed a new drain in. 5pm all blood tests and info in. 8 pm wheeled into surgery.

    I did get the nurse to remove the left side drain. It was under the 30ml for 3 days. The new right side has a larger tube to prevent clots and a cover around the drain hole I get to leave till I go back the 12th. No drain sponges and taping. It is wonderful.

    I am taking today and tomorrow off to not be too busy.

  • moderators
    moderators Posts: 8,633
    edited January 2023

    Thanks so much for checking in and letting us know how you're doing, Kathleen! NO CANCER, woohoo! So glad they were able to remove one of the drains and replace the other, you're probably feeling much more comfortable now. Take it easy and continue to rest!

  • moderators
    moderators Posts: 8,633
    edited January 2023

    Hi all! We apologize -- in thinking about creating these threads, we actually thought it might be more practical to have all groups (Tuesday and Thursday) to post on the same thread. This way, if you attend more than one meeting, you won't have to submit any updates to more than one thread to reach all of your friends. AND, you may even meet some other members and get additional support from others you don't see in your usual meetup.

    You can connect with everyone on the new existing In Treatment Zoom Meetup thread here: https://community.breastcancer.org/forum/6/topics/...

    We'll lock this thread to avoid confusion. Thanks for your understanding!

    Sincerely,
    The Mods

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