Triple Negative Stage IV

Thank you @hippmark ! I’m looking forward to it. Pretty sure they will record the session and make it available . It’s a good program and list of speakers. My bit is all of 10 minutes at the end, and will probably do a body scan meditation .

Finished grading field final trip reports from my students, and now enjoying sitting on the couch, feet up. Made a pot of green tea and am tired lol.. the post radiation fatigue has settled in a bit. But happy I can sit, drink tea, and check in with you all ❤️

Went to MSK dermatology yesterday and saw my NP who did the biopsy, who specializes in skin Mets , for her to check the radiated skin, and she said it looked great though it is uncomfortable. She prescribed a topical steroid cream and gave me these foam patch dressings which help. Since it’s under the arm, it is a sensitive spot to begin with. But the nodules responded well. Which is great. Everyone is happy with the results .

Unfortunately though I have a new lesion/ skin nodule, on the breast that we radiated in November , which can’t be radiated again. My MSk MO saw it, and made a face ! Oy vey. So Doxil here we go. Hopefully the systemic treatment will get it. I start Doxil tomorrow. He did tell me , that we might in a few months look into a skin Mets clinical trial at MSK, that would not require I go off Doxil. So we might try for that in a few months, if the new nodule gets worse.. which hopefully it doesn’t and clears.. but I like that there are options. So we’ll see. My NP Dermatologist, Cara Norelli I saw yesterday actually runs the clinical trial he mentioned, such a small world, and said if / when I’m ready my MO should reach out to her. Though I would have to have more than one lesion to be eligible for it she thought , and hopefully that does not happen… so just Taking it all one step at a time. So many pieces in my puzzle lol. MRI came back clear NED , waiting on the PET.

! @scgal08 How are you doing on Enhertu?

@cookie54 thank you Andrea. You are so sweet and supportive, for so many ❤️ . Big hugs to you and yours.

FYI all - I emailed the @moderators and asked them/ reminded them to schedule a monthly TNB MBC zoom call once a month,and they said they were working on it. More info to come….

And to all out there reading along, and to our lovely small group of posters I wanted to share this beautiful poem I shared with my Mindfulness Collaborator students recently 'Wild Geese' was published in Mary Oliver's 1986 collection Dream Works.

“You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert, repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting–

over and over announcing your place

in the family of things.”

Happy Tuesday, Rhonda ❤️

@rlschaller Wishing you well as you embark today on your latest new treatment.

I'm looking forward to taking part in the Tuesday session, whether on the day of (which happens to be a chemo day), or later, if a video will be made available. Hope so for the latter.

Regarding Insight Timer, I've been drifting off to their Soundscapes, as far as I know not making it to the end of any of them. It's interesting that so many of the Soundscapes are based on water sounds. Is this something to do with we humans being drawn to water?

That's terrific that you've had a good response to your radiation. I'm sorry though that you have to deal with yet another skin anomaly. But the possibility of a clinical trial specific to one's case is good to have in reserve.

I start the second cycle of Trodelvy next Tuesday. Tomorrow's appointment with my MO will tell if she raises the dose from the half-dose that I started with.

@cookie54 How are you doing in the lead-up to your scans next week? I might just borrow your quote (and mindset) of focusing on each step, not the whole staircase. It's a good visual!

So everyone the update is though my mom bilurubin was turning good she was low in proteins so they started her on fulversant . Since is has somewhat like luminal. It was better than chemo for her in terms of side effects. And between she had metal stents placed so that took.almost a week to adjust for her.all.those times she was not eating properly.

@gaurykris glad to read Mom is doing relatively OK. And hopeful that fulvestrant works for her. Low appetite is hard, cause you have to keep up your energy and need fuel, but hard to do when you don’t want or can’t eat. Sending hugs to you both.

@scgal08 Glad you started Trodelvy at half dose. That sounds gentle which is nice. I tolerated Trodelvy very well, I hope you do to. Sounds like you will be going into the second cycle with low SE. Do you know yet if you are upping the dose ?
I loved Insight Timer. I used it for awhile. I especially liked seeing how many people were meditating while I was. lol Sounds lovely to drift to sleep with the soundscapes with water. Soothing. I visualize sometimes floating in the water when I meditate, in a sea of healing waves, the water is magical water, and it washes away all impurities, cancer cells, washes my spirit , keeps me afloat.. and my body clean and clear as I float in a great ocean of love and joy…

@cookie54 Andrea how wonderful to have a boat ! My goodness, love that you and DH have that to share with the sunsets . Your bio pic must be one of them? My DH once thought we’d do that, years ago when I was getting large grants and not working full time, we thought we’d move to Main and buy a boat… lol. Now he wants to move back into Manhattan, so we are never late for the opera again..… lol we’ll see. Life is funny. I too loved your metaphor of one step, not the staircase ! That’s marvelous. Hope your feeling of “off” is manageable. I can feel off at times as well, I find it comes and goes as waves. I hope you are feeling well today, and enjoying this glorious Sunday morning in NJ. I’m in hoboken , along the river and it’s a beauty of a morning.

in your pockets everyone for second cycles, for tests, and daily life. Sending love and hugs today and everyday- Rhonda

@rlschaller Yes my bio picture is one of many beautiful sunset pictures. I will have to post some pics this summer of the new summer rental we are staying in. It's a 200 acre waterfront farm with horses, chickens and 2 golden retriever friends for Buster. It's only an hour and 15 min form our house so we stay a couple days and come home a couple depending on appts , weather etc. It's funny because I grew up in Philly in the city and never would have guessed I would be enjoying the suburbs or boating. So I understand the draw of living in Manhattan with opera's, fine dining etc at your fingertips.There are perk to both .Yes, gorgeous weather also glad you got to enjoy it by the water. What's up with that ship hitting the Brooklyn Bridge?? Seemed obvious that he wouldn't make it under lol..I have to read up on that today. Hope you're feeling well on Doxil .

@scgal08 I like the way your MO is approaching titrating the dose. Seems like a great idea to ease into a new treatment. May the next cycle go as well as the first.Yes being on the water is our Zen for sure. The summers always fly by so we try to enjoy every moment.

@scgal08 Thank you!♥️🤞

Hi Ladies, Good new needs to be shared, NED on yesterday's CT!!! Big giant sigh of relief for the summer. Thanks for all your pocket duty and good vibes💕

@rlschaller Glad to hear Doxil is treating you fairly well so far. Glad you MO is cognizant of you and your well being also. Yes, so tragic that lives were lost in such an odd accident, very sad. Yum, I am a coffee lover glad you are back to enjoying it again, Coffee cheers! Sorry to have missed your meditation here yesterday. I'm sure many on the site enjoyed it yesterday. So kind of you to offer it to all.

@cookie54 woo hoo ❤️💐🎊 What great news on your CT scan. Hugs and celebrations all around. Now you can go into the summer with a load off your mind, so nice. Sunsets and good coffee and DH joy.

Yesterday was fun, I love leading meditations. The webinar was terrific. And I was so glad to be a part of it. I would think they will post a recording of it on the site somewhere.

Hi gals,

In case you do not get community emails, just got this: Hope you sign up! I just did. 😘

1. MONTHLY Meetup: Living with Metastatic Triple Negative Breast Cancer (mTNBC)
   1. First Wednesday of each month at 1:00 PM ET, beginning June 4th. 
   2. Register HERE.

Great news Cookie!

Hey Rhonda, your weekend sounds great, enjoy a delicious dinner and brunch! Yes, it is so nice to see the sun today, a mood booster for sure. Hubby and I will be taking a ride to MD on Sunday for lunch and to meet friends at our previous marina. Monday we plan to go boating with our family as it looks like the warmest day. My sil and bil also boat for the summer in MD so we will kick-off the summer together. Even the 4 dogs we have between us will be there for a swim. Waaay to chilly for me , I need upper 80's -90 to get on a float. I am so grateful to feel well enough to be able to go.

Wishing everyone a good weekend and remembering the brave who lost their lives.

@rlschaller Thanks, it was a beautiful day and Buster had his first swim of the season! It wiped him out, he has to get his sea legs back lol. When the weather is nice we go as often as possible. We are presently doing day trips, our summer house rental begins on 6/13. Then we typically stay a couple days out of the week depending on appts and such. The summer flies by so we try to squeeze it all in!How was your brunch and dinner? Oh I haven't been to the movies for years either. I love kids movies especially when there is some light adult humor also. Have a great time snacking and reclining. Glad your skin is healing, I remember looking at myself and think geez this will take time to heal but it healed up nicely. It's amazing the war our bodies go through and how they heal fairly well.

Anyone here on Prolia for osteoporosis? I have been for a couple years but have been having issues last several months with low blood calcium. Was wondering if anyone had the same issue. I am doubling up my calcium intake for a month to see if it helps. Hope everyone is doing ok ❣️

@hippmark Thanks for the info. The endocrinologist had mentioned Evinity before to me also. I will be due for the next Prolia in November , so time will tell. Hope all goes smooth for you tomorrow.

@scgal08 Thanks for your feedback, appreciate it. Zometa hasn't been suggested perhaps it may be considered next.