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In Treatment Zoom Meet-Ups: Place to keep chatting

This is a space held for our In Treatment Zoom Meetup members to gather in between meetings for updates and support.

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  • collijr
    collijr Member Posts: 13

    Just finished up with the optometrist. So…it's Posterior Vitreous detachment. It's common with aging and nearsightedness. It can lead to retinal detachment. I'm keeping my fingers crossed that it doesn't. Still not convinced the Letrozole didn't have something to do with it.

    https://my.clevelandclinic.org/.../14413-posterior...

  • moderators
    moderators Posts: 7,666

    Jodi, so glad you got it checked out right away! Is there some sort of treatment or therapy that can prevent it from progressing?

  • jakeinva
    jakeinva Member Posts: 17

    thanks for the update - keeping fingers crossed!
    Johnna

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82

    Hi all! I’m checking in to give you an update.
    I’ve missed the Thursday group meetings, but felt a bit odd about attending after completing chemo and radiation. Now that I’m being regularly treated for lymphedema perhaps I’m still “in treatment”.

    Verzenio has been a challenge as well. I’ve been adjusting to the most common side effects but it’s been a bumpy road. I was recently part of a “workforce reduction” and that has been disorienting. I'd very much like to hear other folk's stories and gain more insight into how y'all are dealing with similar things.

    Probably see y’all Thursday.

    Catherin

  • sarahmaude
    sarahmaude Member Posts: 326

    Hi Catherine! I'm with you...since the intense scheduled treatment is over, I haven't attended a Zoom meetup. Sorry to hear about the workforce reduction. Does that mean you were laid off? I can only imagine how that would feel. I know that working was one thing that I really held onto as "normal" during treatment.

    The only treatment I have remaining is my Arimidex and semi-annual Prolia injections. I do have my first post diagnosis mammogram in a few weeks. That's going to feel weird, especially since it's 366 calendar days from my fateful mammogram. Ugh. I'll also get an ultrasound.

  • moderators
    moderators Posts: 7,666

    Catherine, it's so nice to hear from you - we miss you (and you, Cyndi!) on Thursdays. And we're so sorry to hear about work, we know that can't be easy. We'd love to see you in group if you'd like to drop in and update us on how everything has been going!

  • ileepak1
    ileepak1 Member Posts: 4
    edited March 2023

    I just wanted to thank the Moderator . . . last night was my first Zoom meeting. I'm dealing with another breast cancer . . . it is now in my right breast . . . here we go again. Starting Radiation April 17th at Sloan Kettering. . . . I look forward to our next zoom . . . its nice to know that I'm not alone! Thank you again!

  • moderators
    moderators Posts: 7,666
    edited April 2023

    MedicatingMedicatingMedicating

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

    Hi all, red head short hair Kathy.


    It was such a great meeting Thursday. I so wish i was not at work and my jerk boss was not there. He is always a time waster and on his phone or on zoom meetings for hours every day. Off site and goes home early. I had to leave thursday and he questioned if i was on the phone when i was supposed to work. I am wasting company time he said. All because he likely saw me laughing, and
    I got up a couple times as he listens to what i say. He said he was watching the clock. I wasted 20 minutes. Over the amount of breaks i am allowed. Really i thought? ...........Two days he wrote a letter to the dean that he delivered in an envelope. I know when he does that he is making a complaint about me. The first time he took it to HR. They told him to follow the chain. The Dean first. Well, yesterday the Dean called and asked if she might come talk to me. I said of course!!! The first thing she said was she did not want to speak of what he shared as everyone makes mistakes and that was nothing to make a big deal over. What she wanted to talk over is me and how am i doing. She thinks his stocking up of all my past mistakes or errors is wasteful. Focus on the things you can improve and work on. Focusing on negatives as he does and nursing the negativity will not bring him negativity. He gives speeches. A new worker in our office 30 hours running a new program told me it is harassment on what he is doing and saying. Document it he said. This supervisor has snapped at him as well. He was stunned.

    The Dean has told me before to not take work home with me. So i jumped on my desktop, changed my pass word, so now i can log in from all my devices. Procrastination defeated!!!!!

    I read above about cancer coming back. Darn it I say. Really God. Get her treatment that gets the cancer gone for good.

    To the other getting chemo, I had been diagnosed with BRCA2 in Aug of 2021. Immediately in 2 days i went from the chemo every 3 weeks, to Taxol/Carboplatin every week for 12 weeks. In my experience chemo is crazy, but i do not get disability at the college and Covid was in its second year, so I got to work from home. That dreadful supervisor assigned me so much as he thought i was home having fun. HA HA! Chemo brings on tired. I mostly ate Graham crackers and saltines. Crystal geyser water. I was reminded to drink half my body weight in water to flush out that chemo. So i did. I was one who lost 20 pounds. I could not eat the usuals and it has taken a long year to enjoy some foods again i loved. I ate Trader Joes greek yogurt all the time then, now i need to make myself eat it. I did not listen to how others walked through it, every day i felt the feelings. Day 2 was iffy , day three i took Zofran/Compazine for nausea and Senna laxative to keep things moving. Success? Yes, almost no nausea. Constipation. Oh yes. I had one 13 does of the "Red Devil chemo starting with an A. If i recall, your pee comes out a color. Orange? That dose put my blood products at such low levels i was hospitalized for 4 days. I had never been in the hospital. I was hospitalized again for a day in early January, got Covid, so that surgery on the 9th was moved up from April so they could remove my tumor. I was also put on a chemo pill after that 13 dose and once again my blood numbers dove after 29 days of pills. That was the 2nd hospitalization for blood transfusions so i could get home and recover for the surgery. ( It only shrunk 1/2. It started at 5.2.) They felt it would come out with clean margins if they removed it. It did.

    Since all of that, I am nearly out of the active treatment. Left breast/ovaries/fallopian tubes removed Feb 9, 2022. December 28th 2022, off goes the right breast. Two fabulous barbie boobs. The right side just removed is causing trouble. I did not wear a correct compression bra. I forgot to say on my one week check, Jan 5th, the hematoma i sent them a picture of a day before wareented another surgery and the removal of the implant and cleaning of the area to ensure no infection set in. Geez. Drains again for 3 weeks. In Feb i think i was just glad to be done with drains!!! Then my non compression bra allowed fluid to build in my last surgical side done. Twice i have had aspirations to get the fluid out. I declined the drain option for the 2nd. Great, i may be bruising my skin with all the pads i have in my right side, but it does not look swollen after a week. The left side with no problems seemed to have a rash which today i was told could be a fungus. Really? Too much squishing going on and little break from bras around the clock.

    IT is odd, and I am glad i had a journal and a way to track these couple years. Having all of the women in these online forums and in the zoom forums was a wonderful tool. I never posted on social media and i asked others to not. I told few beyond some trusted souls and only in the last few months have i shared. People want to ask if you have fake parts. To one women recently, I said some things are private. Thank you.

    I want to join in now and then to offer support. I was reminded by the geneticist a few weeks ago that i will soon move into the survivors group. No one can guarantee i will not get cancer again, but removing all the parts i have will slow down the Braca 2 mutation. Start working on the 10 points of healthy living and stay on top of all suggested tests and scans as i age. Regular ones will happen for me for a few years, but nothing at all like the last 2 years.

    Whatever we do, ask questions and tell the truth. I tell them any symptoms in the portal. Anything odd that is not going away or hurts oddly. I seldom ever have a fever, but i do have other side effects. I forgot to say, that in March i was going to start radiation, as i got an expander in my left breast and the plan was how to fill it as i got radiation. Radiation doctor said he would tell his family not to get it if i was his family. No real help in giving me extra time in life as my cancer is what 2% of the population has and a 2% help by radiation is nothing. Great, my next surgery for the right side was May. BLOOD clot in April. Blood thinners for 6 months and that is whay my 2nd surgery was Dec 28th.

    My clot is not completely gone...................... This is why i remain active in the effects of cancer on the body. You will not know your path, until your body lets you know.

    Keep coming back.

  • moderators
    moderators Posts: 7,666
    edited April 2023

    Kathy! We were all worried you'd gotten in trouble, or worse, he'd overheard the colonoscopy conversation Loopy It was so good to see you, as always!

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

    Happy Easter all.

    I am grateful I got to see you all. Veronica's talking about foot size is likely where the supv saw me laughing. All of your laughter made the sups comments mean nothing. All of you have been a tool in helping me walk through the last year.

    I wanted to say I have documentation and support from my other program coordinator about his harrassment behavior as well. I am grateful to have this 3rd fellow in the office.

    I am still giggling on shoe size. I have not talked about it in years. I had wanted to add then when I found some sandals or shoes that fit, I bought +multiples. Costco has had some great everyday shoes for summer.

    Today it is about compression bras. As I look at my 2 barbies, they pretty much look the same. Progress!

  • moderators
    moderators Posts: 7,666
    edited April 2023

    k-gobby, we're sorry re. your sup! You are so valued in our groups!


  • rs5
    rs5 Member Posts: 2
    edited April 2023

    I’m new here, so I’m not sure what the procedure is, and I’m not sure if this is my group. I am in treatment in that I’m still taking hormone blockers, but I’m past surgery & radiation. I just need people to talk to who are experiencing similar effects. When I started this journey I have 3-4 friends I could ask about their past experiences and what to expect, but at this point my experience is different than all of theirs so I need a bigger pool of friends to draw encouragement from. At the beginning I felt like I had stumbled into a secret group of love and acceptance and encouragement unlike anything I’ve experienced, it was wonderfu, and I needed that at the beginning. I’ve now come to the point in my treatment where I’m feeling kind of alone, so I’m reaching out on the interwebs. ;)

  • moderators
    moderators Posts: 7,666
    edited April 2023

    Hi rs5, We see you posted in the bonded by bc group would likely be a good fit for you!! Give it a try Medicating

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

    Welcome to this group. I think if you share a bit more someone will identify. Hormone replacers. Chemo. Radiation. Stage 1 plus . So many different cancers and side effects. I have found many voices here that I identify with. Some I listen, read and appreciate for the honesty. Being listened to is what we need. Getting encouragement and suggestions is a benefit. Breast Cancer is what brought us together. This common experience gives each of us personal experiences to share.

    I am getting another US on my right leg. Take a look to see if the clot is less and allowing blood to flow. I took eloquis for 6 months. 30 days of shots twice a day after my Jan 5th 2023 surgery. A blood clot was nothing I ever thought I would get after surgery.

    Crazy side effects.

  • bluefoxmom
    bluefoxmom Member Posts: 1

    Heather, you mentioned trying to find summer tops that hide your port.

    I found tops at LOFT (I was wearing the blue one today). It’s sheer so I wear it over the Amazon Basics cotton tank tops which also help cover the port.

    Hope that helps!


    deanna