Zoom Meet-up for those with an MBC diagnosis

bmp, no, it’s not a hint lol, have you registered?

Mods, can you help?

See you all in 5 😁

KBL, I happy you’re not having problems with X but are also prepared for it. Hopefully, your week on/week off schedule prevents SE’s from building up.

Great to see everyone today 🙂

Thank you, Mae. I appreciate all of your help.

Star2017, I hope you do too. It’s such a great group.

KBL,

Sorry to hear about your daughter. Have you tried the search function to see what other members say about it? Since the mutation is not limited to stage IV, you might find info or get additional input if you look beyond the stage IV forums. Take care. BTW, I have good intentions but have only made one Monday meeting. I will aim for this Monday.

Thank you, exbrnxgirl. Hope to see you Monday. I see the Mods have posted some info.

Thank you, Mods. I knew you would know where to point me to information.

Yesterday's zoom meeting meant a lot to me. As I said, I'm always looking for a reason to blame when I'm not feeling well. I woke up that way yesterday and this morning (ugh!). I feel like there is something seriously wrong with me - and there is! I have stage 4 and have poison infused into my heart every three weeks. I'm sure the heebie-jeebies will go away as they always do, after some time has passed.

I want to thank you all for being so supportive on Zoom. You guys have your own challenges, but you always make time (and have heart) to listen to and advise others on their path with this terrible situation. See you next time.

amontro, I keep popsicles on hand and have one if I find getting to sleep difficult due to night sweats. Works well and tastes great 😁

Hello to all,

I'm sorry I've missed the last few meetings. My Mondays have been filled with work meetings so I have not been able to make the monthly meeting.

I had a pet scan after 4 months of Ibrance/Faslodex which showed "excellent response to treatment" and "stable disease" I started Xgeva but my jaw started to hurt so we stopped it for now and will reevaluate later. I also was recently fitted with a sleep mouth guard for sleep apnea and we think the mouth guard is causing the pain. If so, we'll start Xgeva again.

Back to life between petscans!

Teri

Well, I am late to this party. Sorry ladies.

I had the pleasure of being interviewed a couple of weeks ago for Breast Cancer Awareness. They wanted to talk to someone with MBC and how friends, family, and co-workers can support them.

Check it out.

Whoops! I Did It Again!: Pink - The Interview for Breast Cancer Awareness

So, I've been very intrigued by this. My hot flashes (from the Anastrazole) are so bad that it interferes with my sleep,. I'd love to hear from people if it was truly effective. I'm a bit skeptical and would have to have pretty good confidence before shelling out that kind of money.

Quick update: The gamma knife went well and the pre-procedure MRI showed nothing new. Today I am just resting. I plan to join you all on Monday but my infusion is at 1:15 and WiFi might by iffy.

The doctor with the needles was very nice, so I feel slightly bad for cussing so much but not really, lol

Mae, I’m glad everything went as well as could be expected. I’m so glad the gamma knife went well and nothing new was showing.

I may not be able to make it Monday. I’ll miss you all if I can’t

Thank you so much

I forgot to ask something during the Zoom call today. Are your infusion centers still using numbing spray before accessing your port? I went for a port flush yesterday and was told that they were no longer using the spray. Now, I’ve had my port accessed without the spray before and it really doesn’t hurt so the spray but it was a bit of a security blanket for me. The nurse suggested that I use a 5% lidocaine cream, OTC. This is not quite the same as EMLA which is 2.5% lidocaine and 2.5% prilocaine but should do the trick. Not a big deal but I was surprised that they no longer used the spray.