Triple Negative Stage IV
Comments
-
@scgal08 @cookie54 so nice to see you / hear you on zoom today! I hope you both will continue to join once a month, if it works for your schedules. It was so happy making to share. We go through so much. And yes, waving the white flag sometimes feels very inviting… I’ll keep you posted on the clinical trial for skin Mets progression.
Rita - sorry about the skin and liver progression, that’s always tough I know. Let us know what your MO suggests. We are here for you.
Hugs to all ❤️ have a lovely evening. DH and I are going out to eat and for a walk along the waterfront later. Taking advantage of the good weather and todays manageable fatigue. 🤗1 -
@rlschaller @scgal08 Rita and all the lovely ladies that joined in today. It was such a pleasure chatting with everyone today. I am grateful to have your support and to be able to understood in this lonely mtnbc world is a blessing. I'm hoping to attend in July hoping to be seen lol. I have been troubleshooting my camera but haven't figured out what's going on yet.
Rhonda, it's a lovely evening in NJ , enjoy! Wishing everyone a peaceful night.
1 -
@cookie54 do you have a lever that slides closed up by the camera? I wonder if some how you had moved it/ slide it closed? I do that sometimes on my laptop…it took my talking to a tech on the help desk to figure that out lol…
1 -
@rlschaller Well you certainly have mental telepathy lol. I had been sliding the privacy cover back and forth the entire chat and I could see the camera was on but no image. So after running diagnostics etc and everything was fine I decided to totally remove the privacy cover. Yup and that was it! It's was just a smidge off center and that was the culprit. Don't ya hate that stuff? I refuse to give up which can be good and bad sometimes lol. Anyhow thanks for the suggestion.
1 -
@cookie54 lol oh my goodness! I do hate that stuff..but you figured it out. 🥳 I love your persistence, and never giving up…I think it’s always a good thing. I can get overwhelmed by it all and then I have to remind myself that with mechanical practical things.. there is an answer somewhere… trial and error or a repair shop lol. 😆 Have a great day !
1 -
Hello. It was lovely to meet you @cookie54 and @rlschaller and the others at last week's meeting, and to put a face to the name, where your device allowed!
Rhonda, how are your arm and your burned skin? It sounds like recovery is a slow process.
Good to hear that you are set for the next meeting Andrea, camera-wise.
I've been shedding hair like crazy in the last few days, so time for the chop. I have a wide selection of scarves and caps from previous go-rounds.😒
I saw my MO today and the liver lesion is cancer spread, no surprise at all. We'll stick to the Trodelvy for now, going up to a full dose for tomorrow's treatment. The next CT will be in a couple of months.
Have a good evening!
1 -
@scgal08 Rita - thanks for asking ❤️ the arm and burns are healing really well, it’s such a relief. I’ve been so fortunate over these last two years to have suffered from minimal side effects, but this last radiation series was tough. I was able to do the full range of motion excercises that my OT gave me today, and with minimal discomfort. I actually could raise my arm almost… over my head again. Yeah ! Just a little pain, but it did not feel like the skin was stretching and could tear! Such a relief, and happy making. The body ! In my meditation practice I remind myself that I have a body but I am not the body… I am more 🙏💐 and that has always sustained me and uplifted me.. it’s hard when you are in pain. But meditation and pain management go hand in hand, and am so grateful I feel better and can move more. Yes it’s slow… but reliably steady.
I lost my hair on Trodelvy in a week on the full dose last June ! So am not surprised you are too.i also had lots of scarves and caps I liked. I bought a few on Amazon which I loved. Not sure if these are your thing but here is the link
I also invested in a good quality wig, which I wear to this day. It really was a great investment (cost $650) but it made me feel beautiful and normal lol.. and I still wear it, even though my hair has grown back now lol.. everyone has their own way through this, but I love my wig. Her name is Leah lol…my own hair took a year to grow back, and is kind of wiry and thin. My husband loves it, says I look great, but he is besotted .. so I wear my wig still ❤️❤️🥳
Sorry about the liver lesion being a cancer progression, I figured when you first mentioned it, it was a cancer spread… as my MO says, metastatic disease will have spreads to be expected. We are here for you. 🥰 Sending hugs !🤗 hope tomorrow goes ok. Imagine we are in your pockets for your infusion .
0 -
@rlschaller You've had quite the time Rhonda with this latest round of radiation. That is excellent that you've turned the corner and are healing. Thanks for the link re the headwear. I'm contemplating a wig this time, even though I wasn't interested in getting one the two previous times that I lost my hair. Why it's different this time I don't know … Third time's the charm? Love that your wig has a name!
Today's chemo did not go ahead as my neutrophils were too low. They were too low in yesterday's pre-chemo bloodwork and on repeat today they were even lower, so treatment is postponed for a week.
The local cancer foundation offers many free programs to those in the cancer sphere. I'm on a waitlist for a mindfulness meditation class this week. I feel the need to quiet my racing mind.
Wishing you all the best as you have your next Doxil infusion tomorrow.
0 -
@scgal08 I'm sorry that your hitting a rough patch with progression and now your neutrophils. I know how disappointing it can be when your body doesn't cooperate. Wrapping you in a comforting hug. Glad you found an outlet to help quiet your mind. I hope you find a bit a mental relief with it. Well why not try a wig I guess,I wore head wraps also. But I think it's an good option to have if your feeling it, then go for it! Waving my magic wand over you that your neutrophils start to rise.💕
@rlschaller Hilarious that you named your wig, love It! Well I am thrilled to hear that you are regaining range of motion with your arm. What a difference a day makes sometimes, may your forward progress continue. I so admire your mindfulness you exude a sense of peace.
1 -
@scgal08 my neutrofils were low on Trodelvy as well. I was prescribed Zarxio injections to do at home to raise my wbc. It worked well, and was not difficult. They showed me how to do it, and then it was pretty easy. I used to laugh that my belly fat came in handy finally . You pinch the belly fat, and inject a short needle pre loaded…it’s done once or twice a week pending on your levels, after each Trodelvy infusion. Just in case they decide you need it, it’s painless, quick and fast. Wig wise..lol it was my third time loosing my hair when I bought “Leah” . I do think third time is the charm 😆
I hope the mindfulness class waiting list opens up.. as you know I find it so helpful. Our minds are like runaway trains, at least mine can be. I offered to do a class for BCO .. on stress reduction through mindfulness based practices , and they are thinking about how that might work, I’ll keep you posted.
@cookie54 thank you! I know, it is hilarious naming a wig ! I have friends who have named their cars, or homes..so I thought why not !
1 -
How are you doing after your Doxil infusion Rhonda?
During early-stage cancer I did the Grastofil injections, which seems to be the same drug (filgrastim) as Zarxio. I was appalled when they told me that I would have to inject myself. "You want me to do what??" But after the first one it was not a big deal at all. Silly me. When I asked at the beginning of the mets whether I would do those injections again they said no.
In my local MBC group today electrolyte drinks were suggested for low neutrophils. Apparently it's been shown that those with neutropenia are low in electrolytes, among other factors. Can't hurt to try that.
Andrea, how are you doing on the capecitabine?
0 -
Hey ladies, Thinking about self injections I remember when I was on A/C I did use the Neulasta Onpro but never had to self inject.. I can imagine how surprising that can be but amazing what we get used to. Sometimes I look back and think geez I have been through so much how did I manage. Somehow we seem to keep barreling through with our heads held high. Agree on the electrolyte drinks, it certainly never hurts to try, fingers crossed. How is your scalp feeling? I don't know about you gals but my scalp was so tender when I was losing my hair.
I am doing fairly well on Xeloda, thanks. There are just some continual side effects like the hand/foot syndrome and neuropathy. I am very grateful to be able to navigate everyday life.
Hope you both had a good day and a restful night❣️
0 -
@cookie54 I keep thinking of that line, "You can get used to anything." It's often the case.
I had the rest of my hair cut off today. This time I asked the gal to use the #2 clipper attachment, leaving about a 1/4". Much better than the shave down to the scalp, for scalp comfort.
@rlschaller Hope that you can arrange that mindfulness class for BCO. Yes, please let us know about it.
Have a good weekend everyone!
0 -
@scgal08 You're so right with that quote, we all certainly have! Good idea with leaving a quarter inch behind. I think I made the mistake in delaying getting it shaved and that caused me more discomfort. Fingers crossed this week for your labs❤️
@rlschaller Hope you're doing well and had a nice weekend in between this swampy weather.
All is well here, we settled in out summer rental Friday and had a nice Father's Day weekend with our children. Was exhausted when we came home yesterday as I am not the greatest sleeper especially away. We went out to dinner Saturday night and I had delicious Maryland crabcakes. We did manage to boat in between the raindrops so it turned out to be a nice weekend.
Have a good day ladies🌺
0 -
Hi gals, doing well so far on 2nd infusion of Doxil. My ANC counts were a little low at 1.4 and they like it at 1.5 .. so they lowered my dose a bit. Going in tomorrow for blood work so they can keep an eye on it. MO thought the Mets were better so far, but there is redness creeping around on my side/back not sure what that is… it’s always something with the skin it seems. I so hope the Doxil can contain it, or at least keep it at a slow growth. We are keeping our eyes on it too. But the radiation has healed ! Yeah. I can lift my arm over my head again as of this morning, no pain at all or sensitivity. Feel like a new woman. Did a HIIT routine on YouTube (AIM fitness) and the full range of motion excercise from PT. It’s amazing the difference when you feel good. Everything is so much easier. My nails on my left hand are starting to crack though. I remember from our group mtg on zoom, someone mentioned finger rubber pads… I have to look into that.
I also see the RO for my follow up appt tomorrow. I’m looking forward to that, I’m hoping she wants to move forward with the radiation visualization project. Fingers crossed. I’ll let you know
. @scgal08 glad you went with a short cut, smart! And yes, you can get used to anything, agreed. I think having a positive attitude helps so much. And finding ways for beauty to be part of the life..and laugher too . Amazing what we go through, but we have each other to share with and listen. Hope the labs go well. W are in your pockets for support.@cookie54 so glad you settled in to the summer rental and enjoyed boating in between the rain drops. I’m such a city dweller hard for me to imagine boating, but I have a very romantic vision of you and your husband, with your feet up and the wind in your hair… lol. Father’s Day with your kids must have been nice too. We trade off with my son and his wife, we did Mother’s Day, her family Father’s Day. DH and I went to dinner, had salmon in a balsamic fig sauce. It was lovely, a bit sweet though. . I love crab cakes , perhaps I’ll order that next time. And I cheated with a glass of Cotes duRhone which I enjoyed.
I’m off from work this week, so happy ! I did not check my email once . I’ll probably peak tomorrow but today was a gift. Rainy and swampy yes. But I love the quiet. ❤️ Talk soon…0 -
@rlschaller Happy to hear you are back to exercising and feel like a new woman! Bummer about your labs I hope it recovers well. Ugh what's with the creeping around the corner crap! Oh no don't even try it cancer we're not having any of that! We are going to vision that disappearing and Doxil stomping on it. Honestly you ladies are always in my daily prayers❤️ Haha love your boating vision too , that only happens when Buster falls asleep. That salmon sounds amazing to me , I have a sweet tooth so that's right up my alley! Enjoy your week off and fingers crossed for appt tomorrow.
0 -
Hi all I had a nice meeting with the RO today. She was happy with the healing and the complete result from treatment and feels she has the right ratio / strength now, should we need to radiate any of the new skin nodules that have popped up. Hopefully the Doxil will dissolve them instead. Yes @cookie54 visualizing the cancer cells all melting away from my skin! Those darn cells…
And good news, She definitely wants to move forward with a pilot radiation Visualization project but we have to figure out funding ! So we’ll have a zoom mtg in 2 weeks and strategize, hopefully she can hire a summer student to research prospects. I’m going to put my prospecting cap on as well. I might reach out to the mods and see if BCO would want to partner on the pilot and knows of or could suggest funding… I’ll keep you posted. Made my day ! ❤️1 -
@rlschaller glad to hear your RO feels she has the right recipe to combat skin mets now! May you never ever need it again! Congrats on getting the thumbs up on your project, very exciting! Hope between the both of you it can be funded without too much of a struggle 🤞🏻
1 -
@rlschaller Good to hear that you are still finding the Doxil treatment to be tolerable. Did your latest bloodwork improve? Those creeping skin mets are rather distressing. Hope that the Doxil works on them, without you having to do radiation again, though at least your RO has the correctly calibrated recipe in mind if need be …
What did we do before YouTube workouts … now there's no need to attend in-person classes. I go between several favourite YouTubers for various classes: barre, cardio, strength training, etc. That's great that you can now exercise comfortably!
Finger cots, such as the following, were mentioned on the Zoom meeting.
Kudos on moving ahead with your pilot project. It's such an intriguing concept.
@cookie54 Your summer accommodation sounds lovely. As do the crabcakes, yum.
My neutrophils were still too low on Tuesday so chemo was delayed for a second week in a row. It looks like I'll be staying at a reduced dose for the time being.
1 -
@scgal08 Ugh i’m sorry to hear your neutrophils have not recovered . I wish our bodies didn’t have to go through such a war all the time!Hoping 3 times is a charm and next week you will get chemo. Well reduced dose it will be not to tank your numbers further. Sending you a big comforting hug 🤗
0 -
@scgal08 @cookie54 Indeed ! We do just keep on keeping on ! We are such resilient folk. Sometimes I am simply amazed at all we go through ❣️ Not sure if my ANC levels were better this week, the day I went in for blood work my MO was out sick, and yesterday was a holiday. I figured if I needed to know or do something, the NP would have called. Will see what next week brings. Hope you can get back on the Trodelvy next week even at lower doses to keep everything in check. Along with @cookie54 sending big comforting hugs.
Lol I know, where would we be with out YouTube. I always feel I’m late to the tech game, I’m not what would be called an early adopter! And then I love it. I resisted texting for a long time, always wanted to hear someone’s voice on the phone, and now I wonder why is my phone ringing ! Why didn’t they just send a text, or text me to see if talking in the phone now was convenient lol lol… I love YouTube, for my workouts and for snippets of comedy stand up, another favorite of mine for early evening entertainment. Thank you for the finger cots , I’m going to look into these. I was able to keep my big toe nail in place with a bandaid, until it grew enough to come off easily without pain or too low down. But with the two finger nails I think the finger cots is a better solution.
We are having a heat wave right now, so am just sitting back and enjoying the air conditioning. The little joys ! We traded the stormy swampy humidity for high temps. Stay cool if you are experiencing the same Happy Friday gals , hope you have a lovely evening ❤️❤️❤️❤️1 -
HI ladies, wishing you both a nice weekend. We have a grad party tomorrow with the family so hoping it's not stifling. As much as I am so grateful for AC I prefer to sit outside. Yep big heatwave coming this week! Agree Rhonda , no news is good news in many situations. Have a restful evening gals. I'm look forward to sleeping in my own bed tonight! Our dog Buster has been waking up with the chickens on the farm at 5:30 lol. I'm a morning person but that's just a tad to early for me.
0 -
@rlschaller @scgal08 Hi ladies thinking of you , hoping your labs look better this week!❤️
0 -
Thanks @cookie54 ! All is good on my end. @scgal08 hope all is well in Trodelvy land.
What a heat wave we are having here though …. I am so tired of it. I hope the grad party was fun and bearable outside. That is so funny that Buster wakes up with the chickens. Reminds me when my son was little, and he would wake up with the sunrise.
I love walks with a nice breeze.. the heat is supposed to break tomorrow, and I’m actually looking forward to walking the rain lol.I go to MSK tomorrow to see if I’m eligible for a skin Mets trial they are doing. We’ll see…I’ll fill you in once I learn more.
0 -
@rlschaller Glad to hear all is well! Oh how I miss my outside walking too. I'm grateful for my cold basement workouts but enjoy the scenery outside much better. In your pocket for MSK tomorrow, it's worth a try to see if you qualify. Fingers crossed.
Was at the MO this morning for monthly labs and visit. Curious to see if my doubling of calcium supplement made a difference. Going out to dinner tonight with my childhood girlfriends, always nice to catch up. Waiting for thunderstorms to roll in so we can get back to cooler temps.
Have a peaceful evening ladies💕
0 -
Amazing how cool it is this evening! Actually had to put on a long sleeve shirt. When I was walking over to MSK from the bus, I was actually cold. It was so nice. I met the doctor running the study and she explained the process and took photos of the Mets and explained how she would treat them. The research team still has to do a screening of my medical records and then call me in for a few tests. So today was first visit, then there is a second visit if I qualify. Should know next month. It’s a phase 2 study, so they are investigating a new drug that works with light therapy. Here is the link to it: . I’ll keep you posted.
Hope dinner was fun @cookie54 ! Getting together with childhood girlfriends for dinner is such a treat. I have a group of gals I go out with every other month or so, we met when our kids were young, that is now over 30 years ago. Time flies doesn’t it ❤️ Enjoy the cooler temps.Sending hugs to you and @scgal08 .
0 -
@rlschaller Oh this air is feeling glorious, was able to enjoy my coffee outside this morning. Ok gotcha I just read over the study and briefly looked up the process. Interesting concept for sure and how great would it be if it is successful. Great opportunity for sure so we'll wait and see how things play out. Dinner was fun! I always feel bad for the server because we are so busy gabbing away that we are slow to order and overstay. We always make sure we tip well for the somewhat inconvenience. It's nice you have a regular meetup , the challenge always seems to be scheduling a date.
@scgal08 Waving hi, hope your having a decent week❌⭕️
Wishing everyone a good and weekend.
0 -
@rlschaller Sorry to barge in on this thread, but I wanted to ask you if this was the new targeted photodynamic therapy I've read about lately. I thought it had only gotten through mouse trials but really glad to see it's moving along. Really exciting.
https://www.universityofcalifornia.edu/news/breast-cancer-treatment-advances-light-activated-smart-bomb
0 -
This thread has been busy! We just emerged from the heat wave here too. What a relief, until the next one comes along. ☀️
@cookie54 I like my workouts in the somewhat chillier basement too. It beats going out to a class. I like to mix them up each time.
Hope that your labs went well! Was it suggested that you double up on calcium?
@rlschaller The clinical trial is most interesting. It sounds as though you wouldn't have to stop your Doxil treatment while on it either, which is a good thing. Hope that you are accepted into the trial. 🤞🏻
After two weeks in a row of Trodelvy being delayed due to my low neutrophils, I had treatment Tuesday. That was a relief. However, my MO kept the dose at 75%. We'll see what she has to say about the situation when I see her in July.
Have a good weekend all!
1
