Treatment Zoom Meetup (Tuesdays) place to keep chatting

Teri23

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

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

KLinDallas

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

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

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

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

Carolyn,

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

Teri23

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

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

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

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

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

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

Tues peeps,

Where are you?

This is a great place to post updates!

Hope to hear from you!

Moderators

Agree! We'll reiterate on Tuesday!

K-Gobby

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

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

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

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?