Best Of
Re: Are you currently (or have you been) in a Clinical Trial?
Hi guys, rolling off of the Pfizer Kat6 trial. It was a good 18 months! Fairly easy SEs. Bones are still stable but one of my liver mets grew too much and they won't allow sbrt or histotripsy so on the Orserdeu.
Thank you for all the research and sharing on this site!!
Re: Are you currently (or have you been) in a Clinical Trial?
Hi @eleanora and @cure-ious
Thank you for all the kind words. It's been a sh*tshow lately for sure, but I'm lucky to have an open-minded doctor so I can bring other combinations to him and won't be thrown out of the office like I would've been with my old oncologist.
He said Orserdu and Verzenio was one combo he could get approved, so I guess some insurance (I have Medicare) companies are allowing it.
I will ask about the JAVELIN trial when I see him and bring him some data, but I have a feeling he's holding on to immunotherapy as a Hail Mary. We shall see.
Thanks again ladies for the support and information. I'm on it!
CBL
Re: Are you currently (or have you been) in a Clinical Trial?
Hi everyone,
Update from Friday's appointment…
Well, when last we left the soap opera, As the Cancer Turns, the doctor thought I might have pseudo-progression because my liver numbers went down even though the scan showed progression. However, yesterday when I was due for round 4, my liver numbers had skyrocketed, like by 300-600 points. Yipes! So he ordered a stat CT to see if I had progressed again, and if so, we'd start Talzenna asap. He put a hold on the Datroway infusion.
My blood pressure was 86/60 so they gave me fluids and then did the scan. I received the results last night and yes, I did progress. Not by much since the scans were only 3 weeks apart, but still progression. So I anticipate a phone call on Monday and probably start Talzenna on Tuesday. I don't know much about Talzenna, but I'll do a little research today.
I'm super bummed that the Datroway didn't work, especially since there was evidence to show BRCA mutations did well with it (like 80% response). It wasn't the easiest drug—the fatigue/stamina issues were pretty bad—but I would've gladly put up with it had it worked.
I don't mind saying things are getting a little scary. The cancer hasn't stopped growing in a year and nothing we've tried (two trials, Orserdu, and Datroway) has even come close to stopping it. I sure the hell hope Talzenna works. I think my next option would be Orserdu plus Verzenio, but maybe he has something else up his sleeve.
Anyway, that's it for this report.
Health and happiness to all,
CBL
Re: Brain Mets Sisters
The head RO called on Friday and advised that they had a second, deeper look at the scans with a radiologist, the neurosurgeon and the RO and confirmed that the area is a “really good candidate” for gamma knife. They believe it is localized and has defined edges, which makes the treatment planning easier. So, I’m booked in this week. They said it will take about 1hr 20min this time but I should still be able to use the mask. I really hope it works and responds really well like the previous ones with no notable swelling or necrosis. Hopefully the higher res MRI before the treatment doesn’t show anything else, but if it does, I guess they can treat whatever they find. It was just this one oblong shape on the regular MRI 3 weeks ago…
harrow
Re: Can we have a forum for "older" people with bc?
Harley, so sorry your DH got stung. That's one of my biggest fears—up in the Catskills at a resort I got stung by a wasp when I was 10 (it had camped out overnight in my cabin inside the sleeve of my cardigan, and when I donned the sweater in the morning, at first for about a second I thought it was one of those drycleaning tags that they used to staple into clothing…until yeeeeowch!). My upper arm swelled so badly I had to spend the morning in the pool submerrged up to my shoulders. Ever since then I've been terrified of bees, wasps, hornets & yellowjackets (especially the latter, which will attack unprovoked and don't leave behind a stinger so they can live to attack again). For years I carried an Epi-Pen because I'd been told that the combination of penicillin + ragweed allergies predisposes one to an allergy to hymenoptera venom. Then I was retested and found not to be penicillin-allergic…and that Epi-Pen had long since expired. Glad the Bactine worked—and there's always ice.
Got a lot done today: all the boxes are out of the front room, and found the glass shelves for the small TV stand and three of the six for the tall AV unit. Located 2 of our 3 receivers, 2 amplified indoor antennas, a Blu-Ray player and 2 CD burners, plus a cassette karaoke machine (that one goes free to a good home, heck, any home). Still no luck locating anything else for which I'd been looking. Was able to jettison about a dozen boxes of books, bills and Bob's old grad & med school notes. Also started re-shelving my LPs. The crew yesterday found a large metal-and-Masonite shelving unit, and we (the crew, Carrie via text, and I) debated endlessly about where to set it up, Once assembled, we found it's bigger than anything we remembered having before the fire—I suspect it isn't even ours. Oh, well. finders-keepers. It'll hold all our suitcases. Tomorrow we wade through the rest of the bedroom boxes (only 4 remain) and start culling the 12 boxes in the dining room. Needless to say, we're generating a lot of trash.
But we still can't move until the contractor gets back and we can go over the punch list—and paint the kitchen & baths (and let them dry & cure). That'll likely take us into (sigh) mid-Sept. We have a long timeshare weekend in NYC planned for Bob's birthday weekend mid-October. Hope we've settled in and found cat care by then. We've had to postpone that trip four times since the pandemic began!
chisandy
Re: My Husband, My Life, My Love, My Family, My Cancer
I’m requesting pocket duty for scans tomorrow. The last ones hinted at possible progression so I’m really nervous
wren44
Re: TNBC MBC Stage 4
@nonni2015 Hi Nonni - nice to meet you. Welcome to the thread. So sorry that after 18 months you had a recurrence. What a drag ❤️ . I so understand! I think I went 6 months… but it was growing the whole time, we just didn’t know it until it pushed through my skin. I too did the chemo, surgery , chemo, radiation (2x) and ongoing changing chemo route.. and so it goes. I have not been on Eribulin, but it’s on my list of possible next steps when/if the navelbine stops working.
For hair loss, if needed, I highly recommend investing in a good quality wig. I did that when on Trodelvy and love my wig ( her name is Leah) . None can tell it’s a wig, and I feel beautiful (yes my ego cares).
For quality of life, you get to define that, don’t let others depress you or tell you if your life is a good life. You have so much power to choose the positive side of what a life presents . There are some things in our control, the progression of the cancer is not. So we do other things to enhance our quality of life, if we feel up to it. Sending you much light and positive energy to ease the way! ❤️🙏
It’s hard this human journey, but we all age and sicken, it just is the cycle, and, we all can laugh and love and look for the wonderful beauty around us too. Doesn’t mean we can’t complain and mourn what we loose, but celebrating what we gain in perspective is so important. Evolving in light, is how I see it .. I love my life. It is what it is. Striving for what I can’t have or don’t have, wishing it otherwise..I don’t know, it just seems like a waste a of energy. i don’t want to waste a moment of life, adapting to every day changes in body and mind is required, and staying close to what are small joys everyday counts for a lot. Anyway, sorry to philosophically comment … yes letting go constantly is part of it, and boy do we know how to live !
. @scgal08 Rita the new medicine is so easy on me, only SE slight fatigue. I notice I don’t have the stamina I used to have lol.. gosh aging and chemo ! But I’ do my cardio and stretching and range of motion and pat myself on the back. There is a stage 4 thread here for excersise, and some of these gals walk 4 miles a day, swim and play pickleball! Lol I read, and cheer them on, and then do my YouTube 20 minute videos when I’m up to it… and shoulder excersise for the radiation scarring. I’m so proud I got my range of motion back. My MO lowered my navelbine dose due to my anc levels being low, but all is normal again. We are keeping our eyes on the Mets, last week they were redder, this week they are stable and less red and some nodules disappeared, but plenty are still there… it’s all so visible! Nothing new growing yet…hoping I can stay on this medicine for awhile, we’ll see. I’m adaptable lol… How are you doing? Are you still on Trodelvy? Glad you could post here again.
@cookie54 Andrea Hope with the summer coming to a close you are getting every inch of water and boating relaxation in. Hope Buster and hubby, annd MIL are well.
Bug hugs to all ❤️ Rhonda
Re: Who else is starting radiation in September 2025? Let's support one another!
Likely I will! Meeting with my RadOnc this week to come up with an exact plan….
kks_11
Re: CT and Lung Nodules
Welcome KKs. I think Maggie explained it well. My CT is sept 2 and diagnostic mammogram is sept 3. So we are close with our scans .
tops and nighties!
Hi everyone!
As a result of reading up on recovery after surgery, I have realized I'm going to be needing some front opening garments. On account of big boobs which inevitably cause a gap between the buttons, I own NOT EVEN ONE such garment!
Any brands or companies y'all have found that are good and not too expensive?
A funny little thing to be concerned about, right??