Zoom Meet-up for Those With MBC: Place to keep chatting
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Glad you were able to make yesterday's Zoom meeting. Sorry I missed your introduction but just read your journey from 12/2022 to Jan 2025. I was on Verzenio from Mar 2021 till June 2025 and letrozole Feb 2021 till Feb 2025. The Abemaciclib Verzenio for Stage IV thread is a great source of information. Also, Lily Cares is a foundation that if you qualify will provide you with the drug at no charge. If you are interested, I would be glad to talk to you about it.
I often attend both the Monday and Wednesday Zoom meetings. As for registering for other Zoom meetings, there is a link to each one in the email Melissa sent out with the chat. It only asks for your name and email in order to register.
Hope to "see" you next week.
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Hi @warriorboomer! Yes, as Fay mentioned, you'll have to register for each group you wish to attend. You'll only need to register once per group, and then you'll receive the reminders the day of the meeting with a link to join. You can attend as many or as few as you'd like.
Here are the links to register:
Tuesday registration, 8:30pm ET
We hope this helps and we look forward to seeing you again and supporting you!
โThe Mods
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@aj hi there. About "The big C" series. Don't let the subject matter discourage you. The series simply explores how "Cathy", the msin character is confronted by the various challenges that a Stage 4 aka Metastatic Cancer patient faces, and how she navigate these challenges. The first challenges is how to share the diagnosis with the closest people in your life including family, employer, friends etc, then there's the management of these AFTER you share the diagnosis, the theres the self-esteem issue and how you feel about your body, then there's the confusion of accepting or rejecting conventional treatment, dealing with health insurance, home xare, hospice BUT all delivered with comedic but realistic brilliance. BUT, while the running theme is management of stage 4 cancer, it doesn't ONLY focus on CANCER. Like any regular series, it carries typical movie style entertainment value in other areas of human relationships, personality traits, and life in general. You get to meet Cathy's uncaring father, her devoted well meaning husband, her typical tough headed teen son who makes all the mistakes every teen makes, her boss at work, the insurance company, her students at school, her neighbour, and many other prople. There are many mini stories within the main story.
Try it, and enjoy.
Love and hugs to all.
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@Rosebessie , thanks for the recommendation. Iโll definitely check it out!
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Wishing you strong beautiful ladies a very Merry Christmas
Love snd hugs ๐ซ ๐ค โค๏ธ ๐
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Hi @Rosebessie , @aj ! If you like shows and documentaries about breast cancer, there's also Mondays at Racine (beauty salon in Long Island that open their salon to help in fighting cancer); Miss You Already (starring Drew Barrymore); and Two Against Time (based on a true story, and starring Marlo Thomas).
Happy New Year to you, and everyone on here!
~Wanda
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@birdsndognow I have a morbid fascination with cancer stories. I saw Miss You Already. Tearjerker. Also The Emperor of All Maladies, a documentary. So interesting! Iโm about to watch The Big C.
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Hi everyone -
Happy New Year!
For those who have made multiple requests, I'm finally posting pictures of my Christmas tree (and the decorating journey). As I mentioned during our meeting, it's a little difficult to capture via photos, but you might be able to zoom in on the fully decorated tree photos to see the ornaments.
Here's a list of the photos:
- Tree w/lights only
- Decorating on the Little Giant Ladder
- Tree partially decorated
- Tree fully decorated - view #1
- Tree fully decorated - view #2
- Santa's little helper
See you tomorrow!
Cheryl
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Hi @temerarious , your Christmas tree is absolutely stunning. Thank you for sharing a bit of holiday joy with the community. ๐
The Mods
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@birdsndognow thank you very much for all those Cancer movies references. I shall look for them. There's another cancer movie starring Helen Mirren and Kate Winslet. Its not about breast cancer but I saw those names snd thought, "Wow!! Thats a "must watch" movie. Sadly, it didn't live up to my expectations. Its slow and doesnt ever pick up momentum. Unlike "The big C".
@aj I also don't shy away from movies just voz they're a cancer story. I feel they keep me realistically grounded about my mortality.
@temerarious I love your Christmas tree journey. Beautiful ๐ โค๏ธ
Love and hugs to all โค๏ธ๐๐๐ป๐ค
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@ moderator I have a cardiologist appointment until 4pm today. I'm gonna try to join as soon as I get back home. Thank you.
PS: I hope you get this message, as I'm having tech difficulties.
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@warriorboomer No worries! Join if/when you can - we'll be there!
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Dear @moderators
I finally got my PET-SCAN approval last week. So today was my appointment. Im extremely exhausted so if I pop in, it will be briefly. If not, see you next week.
Love and hugs ๐ซ ๐ค โค๏ธ ๐
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This is very delayed @Rosebessie but we are very, VERY happy you finally got your scan. See you tomorrow, and anxious to hear results. ๐ค
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Thanks @moderators
Always very grateful for your encouragement. ๐ซ๐๐
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I have no update at this time. I spoke to a number of women (from both Mondayโs and Wednesdayโs Zoom groups) 2 weeks ago. I am still meeting with my MO and Radiation Oncologist and getting their input about adding some other doctors at the Cancer center where they are. Until I know more, I am keeping my positive attitude.
Thank you all for asking about me.
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02-21-2026 Hello, how r u all? On the meetup I said that I was thinking of making a chart to note symptoms, so here's what I made. The symptoms go across the top, then I put check marks in days they happen. For any specifics, I'll turn the page right to left, to the corresponding line on the other side. I think it'll really help on my visits. On February's I have 12 symptoms. Sigh..
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Hello Sisters, ๐ Iโm post day 4 of 2nd round of Enhertu treatment (started January 28, 2026) and feeling like roadkill again. I didnโt have as severe of the dex let down side effects (headache) this time, only one day instead of two. Had the sadness and emotional blues earlier, yesterday was fragile city. Today just fatigue and achy and queasy, although not bad enough I need to take zofran. My oncologist NP said she thinks Iโll tolerate it better as I go along. Iโm trying to absorb her optimism. Iโm grieving the loss of quality of life for the 5-6 days post infusion and hoping with all my being that itโs killing the cancer! I still high have quality of life overall and Iโm doing my best to sit in gratitude and accept what is and live in the now. Sunny days after an amazing winter storm brought rain and snow to California helps with spirit. Hoping to join our Wednesday group this week. I have an appointment at 1100 so might join a little late. Love and light to all. ๐ซ๐
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I was trying to unmute myself at the end of the meeting yesterday but had no luck so am posting what I was going to say hereโฆ..
"I want to thank everyone for all your support, prayers ๐๐ป๐๐ป, and love ๐. I can't begin to tell you how much it means to me. Today, you all made me feel so lovedโฃ๏ธ You gave me a reason to smile and a reason to start saying my mantra "I am Going2BeatThis" ! By the way, I can't seem to say it without smiling which makes me feel content and makes me feel like I CAN beat this. Thank you, I love๐ all of you. "
See you next Wednesday.
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Thanks @going2beatthis!! xoxox So glad you're back.
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Hi, I assume you started Enhertu at the highest does. I did as well and lasted for 3 good scans but I was absolutely miserable. I got a does reduction to 80% and have managed well on the for the last 3 years. Fatigue and food aversion were intolerable at 100%. A dose reduction still works, please donโt suffer too long.
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Hi @illimae Yes, I'm receiving the 5.4mg/kg which for my current weight is 360mg. Thank you for your concern and feedback..I'm not sufferingโฆit's an adjustment physically/emotionally/mentally for sure but I'm learning to accept and cope and move through the side effects if it means it's killing the cancer. If anything I may ask to reduce the dex/Kytril and/or emend pre-meds as I go along. I'm fairly certain those are causing at least 50% of the side effects, and I've read others posts who have gradually reduced or discontinued the pre-meds with postive outcome. Taking it one day at a time and trying to live with love and gratitude and grace in my heart. Some days are easier than others ๐Take good care and I'm happy to know you are managing so well three years in! Gives me hope ๐
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Dear @moderators I got my MRI done Friday. And today I had a very long day getting various tests done. My body is totally exhausted and im already dozing. I see the breast surgeon tomorrow. I'll catch up with, and update everyone next Monday. Love and hugs to all. ๐๐๐ซ๐ซ
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Hi @Rosebessie. Thank you for updating us. Get some rest and we will see you next time. Sending hugs right back to you.
The Mods
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Hi everyone,
I wanted to leave an update because I have not been able to attend our group meeting for the past few weeks, and I won't be able to attend again today. I have a lot going on, so I'll try to summarize briefly here.
- THANK YOU again @illimae for the suggestion to get the MRI for my leg. Unfortunately, the MRI found cancer progression that my PET Scan and Bone Scan did not definitively diagnose. The MRI found many tumors in my tibia, and some are significant in size (6.5 cm, etc.). I have an appointment with my new radiation oncologist tomorrow, and I will also be meeting with my orthopedic oncologist on the phone tomorrow afternoon. My medical oncologist is very worried about a possible fracture, so I need to find out if surgery is needed to reinforce the bone. Also, this is the leg with the Lymphoedema, so I have no idea how that's going to factor into the equation.
- I found out about this last Monday morning, and immediately after I received the scan results, I had to take one of my best friends to the emergency room, which is why I wasn't able to attend our meeting last week. He had to have emergency surgery on Tuesday, and he had complications which put him in the ICU on a ventilator. He was able to get off the ventilator this weekend, but I have been at the hospital every evening. (This is a different friend than the one who was in the sky diving accident in December.)
- On Thursday night, I lost a filling, and my dentist only works Mon - Thurs, so today is the first day I can see him. My appointment is at 11am Pacific, so I won't be able to join the call today. I'm a little freaked out about this because the Xgeva nurses scare the bejeebies out of me every time I get my shot about dental work. I'm assuming that replacing a filling isn't what they're talking about, but I'll confirm with my dentist today. (He knows I'm on the drug.)
Obviously, it's been a stressful series of events, but I'm fortunate to have a strong support system, and I'll feel much better once I meet with my doctors tomorrow and get some answers to my many questions. Fingers crossed that I don't break my leg and my tooth gets fixed today.
Sorry about the long post, but I wanted to explain why I haven't been able to attend the meeting, and I didn't want you all to worry about what happened to me.
I hope to be able to join the call next Monday.
love,
Cheryl
P.S. My cat is also at the vet today having her teeth cleaned. She's 15 years old, so I can't help but be worried for her until I get her back home all recovered from the anesthesia this evening. (This is the other cat - not the one with no pants. Although, his pants are back on now! One bit of good news is he's doing great!)
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Hi @moderators Wow!! Ive had a rollercoaster of a week. Im so very stressed out, ive not been able to function. My insurance company decided beeast reconstruction is a cosmetic surgery so they're not paying, They then added insult to injury and said they'll only pay 40% of the surgeons fee, and 30% of anasthesiologist fee. That was Thursday so its been a pushing, pulling, backwards, forwards etc. My surgery is tomorrow afternoon, im supposed to report at 9am, but i still dont have the approval. What a mess!! So I couldn't attend today's meeting because my stress level is way up there. I simply cannot focus. I wish I had more self control when im stressed, but I dont ๐ช๐ช. As of now, ive no idea how tomorrow will go. But, i pray it can happen soon. I miss every. Sending love and hugs ๐ซ ๐ค ๐ ๐
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Hi @moderators - I tried to sign in yesterday around 3:45 but a call to SeeQ comfirmed that the meeting had ended early. I met with my MO yesterday to go over my blood work in preparation for my infusion today. My Absolute Neuphils were at 0.75 and she said I should get a Xarzio booster. Her APRN said that since I had Neulasta on 2/25 it was too soon to get the booster and cancelled my appt to do so yesterday. So when I arrived this morning the reran my CBC and CMP and my Absolute Neuphils had decreased to 0.68 and I definityly could not get the infusion. So tomorrow I have to go back and get another blood draw to see where my Absolute Neuphils are and to get another booster in hopes that I can get my infusion on Thrusday.
In the meantime, me RBC, Hemogoblin and Hematocrat are all low and I will be getting a transfusion (1 unit) of packed cells (not Whole Blood) tomorrow.
The good things that did happen yeterday:
2 of my markers went down by 2 points and 1 went up by 2 points,
My PET scan has been scheduled for mid- April and unless my markers start going up significantly, she will whhich case she will do the PET sooner,.
I can skip the cycle in May and go on the cruise we booked in Jan 2025 ๐
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@Rosebessie - we are so sorry to hear of the stresses brought on by the insurance denials. We feel your frustration! We hope your breast surgeon was able to supply an updated procedure code that confirms the necessity of the surgery. And that by the time you see this post, that you may (hopefully) be recovering post-surgery! We all missed you at meetup, but hope to see you, with better news, at our next session.
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@going2beatthis, we missed you at meetup, but thank you for sharing your updates here. Wishing you steady improvement in your blood counts, and definitely continued improvement with those tumor markers! And hurray for the cruise!
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Hi everyone,
I just wanted to check in again since I was not able to attend today. Sadly, my friend who went into the hospital 2 weeks ago had a cardiac arrest last night was diagnosed with no brain activity this morning. I was responsible for his Advanced Health Care Directive, so I had to make the decision to take him off life support. I was able to be with him when he died. He has been a dear friend, and this is devastating to me - my heart is absolutely shattered.
I also had a PET scan on Friday, and my medical oncologist agrees that the cancer is progressing and I need radiation again on my lower left leg. Unfortunately, I also found out this morning that my radiation oncologist has a family emergency, so my appointment was changed from tomorrow (3/17) to March 30th. I won't know next steps until after that date.
I'm not sure when I'm going to be able to return to the group, but I will do my best to join again as soon as possible.
Cheryl
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