Zoom Meet-up for Those With MBC: Place to keep chatting
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Oh @illimae, we're all here sending our love and support to you as you go into your next MRI. We hope the trial will be a good match. Gentle hugs for you.
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I’m having the spine MRI this evening but don’t expect it to find much since the bone scan was clear and we are not suspecting lepto this time but my neuro onc is a bit of a worrier.
As for treatment and based on appointments posted to my chart, I’m assuming that we’ll do proton radiation to the new spots, one of which is a patchy area close to a previously treated met.
Also, this is the first (and small) progression on Enhertu, so I plan to stick with it. I feel normal, definitely not in any immediate danger and the trial is a pairing of two med kadcyla and Tukysa, one that is inferior to Enhertu and one that didn’t seem to work for me when taken as part of the Herceptin, Xeloda combo.
Monday will be the discussion, all the details and final decision.
In other news, we took the boys to Galveston yesterday for their first time at the beach 😁
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How cute! What did they think of the water?
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@illimae - we had a big old dog with webbed feet ( like a lab mix) that was really afraid of the water until I dragged him, quivering, a few inches at a time (letting him settle in between). By the end of the day, he figured out he loved to swim. He was big enough to play in the waves, and not be bowled over like your little darlings would be.
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My sisters dog loved swimming in any kind of water, and was a bigger boy than your sweet little ones. Ah..Smells of the beach bring back lots of memories of our summers in Main. Galveston water is probably warmer lol… my husband and son would turn blue boogie boarding in 50 degree water… your pups and hubby pic is great ! Good luck Monday, hugs to all.
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So, after my update a radiation procedure was scheduled for tomorrow and I resigned myself to getting that darn metal frame a screws again. But, today, I was told that the tumor board met, reviewed my MRI’s back to 2021 and think the new spots might be old treated ones that weren’t visible last year, which is what this MRI was initially compared to. No radiation and no change in treatment but I’ll come back for an advanced MRI in a month for clearer imaging hopefully. Bit of a roller coaster.
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@illimae - Sorry you were on a rolller coaster, but thank goodness for the tumor board. Glad to hear your great news… no radiation and you can stay on your current treatment.
I am also going to be able to stay on my current treatment. My makers both decreased (CEA actually went from 6.5 to 2.5). Next MRI is the middle of Oct to make sure the radiation to that lesion in my skull did what it was supposed to.
Hope to see you at the Zoom meeting on 9/30. Off to Santa Fe and Phoenix (looking forward to spending some time with Carmine and Dan).
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that’s great news @illimae , glad at the end of the day, you can stay the course . I know Enhertu has been good for you. Getting ready for change and then letting go of getting ready lol… it’s really life isn’t it? And yet there is always something to be grateful for. Something else to let go of. Before my mom passed we used to talk about aging that way, always something to say hello to and goodbye to. Lik e the season’s, as I watch the leaves begin to turn from green to orange.
And have fun @going2beatthis ! Enjoy your trip and glad you too can stay the course. When you get back I’ll share some creative Visualizations with you. I love taking control of what my mind focuses on, strengthening the positive imagery helps me.
I’m hoping I can stay on Trodelvy for the long haul, but who knows. There is a quote I like “ the only certainty is the unanticipated “. Whenever I find myself trying to hold onto something that I know is changing, I kinda laugh at myself…and it helps loosen my grip. Cause every thing is changing really, all around us. Nothing stays the same, and I like remembering that. It’s honest and inherent in everything. Well I’m clearly feeling poetic tonight lol …
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@illimae I’m so glad you don’t have to get the frame and can stay on Enhertu. It is such a roller coaster and getting prepared for what you hate and not having to do it is a relief. Now that long trip back in a month. Ugh.
@going2beatthis Have a great time.
After yesterday’s good cry at the meeting, I’m feeling a tad better this morning. I was able to get some relief from my bloated belly. On the days when these drugs are hard, the thought of giving in is rough. I am definitely not going to let these drugs take away my quality for the time I have left. With the 80%, I can definitely say so far the nausea has been better. I will do as Teresa says and keep track of which days are the hardest. I definitely think Day 4 and 5 are winning right now. Thank you all for being there for me.
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@Kbl Kris I’m glad you posted I was concerned Monday. I’m glad you felt better after a day or so. Dealing with these side effects and trying to discern what’s old, new, flares. It’s rough. Sending hugs.
Tanya
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@kbl glad you could feel the love and support on Monday. Tears are good, cleansing. So natural to feel overwhelmed and infusions are a new ballgame. And not feeling well I top of it all …. I agree with Tanya, As @tanya_djamila says it’s rough trying to discern and feel and cope at the same time. Hopefully it will all even out eventually with less suffering and more moments of calm joy . Hugs 🥰
@tanya_djamila I appreciated your comments on Monday. Realistic and positive turned towards life.
For me, some not great news about that spot on my breast, which is actually a little line of spots now. My MO feels it’s new skin eruptions with the tumor fragmenting and melting it’s also rising and breaking through again. Ugh. We are not changing treatment since they are small but they are spreading again. Plan is to keep a watch on it and take one treatment at a time. So it’s still Trodelvy for now. Just when I thought it was stable lol. .. I get caught holding onto impermanence. Some of you might know that I practice mindfulness meditation and one of the 10 main practices is to let go and accept that everything changes always. It’s called understanding life is impermanence and it’s a core of my cancer practice. Letting go letting be. Hugs to all 🤗🧘♀️
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