TNBC MBC Stage 4
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@rlschaller Thanks for the heads-up about the therapist. Not a welcome approach by that person.
How are you feeling on the CMF + Keytruda?
@cookie54 Is Xeloda still treating you well?
Thank you both for the good vibes sent my way and I wish the same back to you.
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@scgal08 Rita I’m doing ok. The CMF + K is easily tolerated as they say. I feel good. The Friday after infusion is a hard day, I have that under water chemo feeling lol.. but it passes after a few hours and then it’s fine. It’s that chemo feeling of being off, mostly for a day or two and face a little flushed for a day or two. It’s every three weeks which I like, so this week I feel normal as I did last week too. Easy to imagine there is nothing going on except aging and this crazy country I live in. I hope I can stay on it for awhile, even if the Mets grow back, which I’m sure they will, they always do. But for now I think the few tiny little dots I’ve felt haven’t changed much, so hopefully we can contain them as is. It’s as you know, one day at a time, one foot then the next. Stable has come to mean growth that is not measurable. I have scans early February so we’ll see, and a new signatera test too to measure the cancer dna in my blood. That’s the marker my MSK MO is using for progression. We are going to see how the next few signatera tests go, and meet again in early March. He has ordered them for every three weeks to coincide with infusions.
So.. Feeling good is my goal, and I’m grateful I feel good most of the time.How are you doing? ❤️❤️❤️❤️
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@scgal08 Hi there , yes Xeloda is still keeping me going! My hands look like a lizard and I am without fingerprints but who cares lol. Cancer treatments aren't pretty but I am grateful to still be stable! Hope you are having a good week and have a little more energy. Always praying for healing for you and all the amazing ladies on the forum💕
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Hi @scgal08 @rlschaller How are you ladies? Rita hope you are making out ok with the terrible weather around your area. Rhonda how are you making out getting to work or have you been able to work from home? Pray for you ladies daily and always hoping for stability.
All ok here, my nephew is doing great working his way back through therapy. It's amazing how the brain can create new pathways. Status quo here, just keeping busy organizing things at home, baking etc. We did the best we could removing snow with the snowthrower but the ice is still treacherous on the driveway and sidewalks. Hoping with a day or two about freezing we can clear some away. Oh and the dog…lol well that's been interesting. He loves the snow but the ice , he went from falling through to now ice skating on top to do his duty lol. Well hopefully in a couple weeks we will see some grass again!
Buster with his torn up furry friend….Hope everyone has a good day❣️
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@cookie54 Andrea I love that pic. Buster and his furry friend, that is hilarious and so heartwarming. The snow and ice is treacherous, carefully walking along the sidewalks here , have been mostly cleared for where I go. To the bus into the city, to the supermarket, to the bank, etc.. it’s too cold to wander too far. We keep our car in a garage, not much need for one here in Hoboken as it’s small city. Only when we drive up to see the kids, but we are waiting for it too melt away a bit. We mostly go into the city via bus, it’s 15 minutes. The city is cleared of snow more so than here, though still a ton everywhere. It’s better, but still too cold to go out lol…. I’ve been lucky not having to go to work on campus, working from home is ideal. I’m so grateful. Just dr appointments, all very manageable. Such good news about your nephew 🙏❤️ . I pray his recovery continues , wonderful. And status quo for you awesome!
I have scans Wednesday, I’ll keep you posted. So far still stable and feeling good. It’s all relative isn’t it? I’m doing QiGong exercises on YouTube each morning, and it’s done wonders for my energy, so nice to have the fatigue lifting. Nothing helps the first few days of chemo, but that’s ok, it’s keeping me alive and I’m happy.@scgal08 Rita sending hugs and good vibes ! Hope you are hanging in there.
Much love to all, Rhonda
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@rlschaller Well it sounds like you have travel worked out perfectly. I know when I lived in Philly I never drove, took the subway to work and walked everywhere. It was a huge adjustment when I moved to the suburbs but glad I was able to experience both ways of living. In your pocket on Wednesday for scans, I like to think it's all relative too.Sending positive vibes up the turnpike to you lol😊
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Hello ladies.
@rlschaller Good to hear Rhonda that you find CMF + K to be easily tolerated, although feeling off goes with the territory. That's an interesting perspective, to look at stability as unmeasurable growth. Would that we all have that!
That's helpful that you can work from home and not have to venture out too much. It is exceedingly cold here too with loads of snow. I've tried Qigong with Kseny; you may have recommended her. I'll have to go back to that as my energy is at rock-bottom level.
Much good luck to you for your scans on Wednesday.
@cookie54 Yay for your continued stability Andrea! Thanks for the laugh with the picture of worse-for-the-wear furry friend. Buster seems to be adapting to the weather conditions.
Wednesday continues the second Eribulin cycle. So far so good. It's been a month since I completed the brain radiation, so I'm feeling better in that regard but still awfully tired and dealing with muscle weakness. I'm doing exercises to help with the latter.
Sending many good wishes to all!
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hi Rita @scgal08 so nice to see your post. I know the radiation really can kick the energy right out of ya. My latest regimen did too. I hope the Qigong can gently bring the energy flow back to you, and you feel lifted up. Yes i enjoy Kseny’s YouTube channel. The just the right length and then I can lay down again knowing I moved my body lol…hugs ❤️
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@scgal08 Hi there, glad to hear your feeling a bit better and always praying that Eribulin does a good job! Thinking of you this morning on treatment day may it go quick and smoothly. Hugs
@rlschaller In your pocket today for a nice stable scan🤗
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Hi gals, @cookie54 @scgal08 great scan results, near complete resolution of lymph nodes, significant decrease in FDG uptake and skin thickening in breast, and back, and thoracic spine. And best of all, no new FDG uptake anywhere else. My MO called to say remarkable results. As we say, it’s one scan at a time, so today is happy result day. Rita perhaps ask your MO about CMF , it’s an old drug they don’t use much anymore, but it is working for me. Might be a good next line option should that time come. ❤️❤️❤️
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@rlschaller Rhonda….Wow this is amazing news!!! So happy for you to finally find a therapy that truly did a great job! Cheers to your MO and your fabulous care team. You have been through so much the past year with drug changes I can only imagine the relief you are feeling now. May this continue to be your wonder drug and keep everything quiet for a verrrrry long time. Big hugs and raising my coffee cup in celebration☕️🤗
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@rlschaller I’m so glad about your great results and your MO’s Positive phone call to let you know how remarkable the results are. This is so uplifting news for you girl.😊🩵🌷
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@shanagirl and @cookie54 thank you. Your well wishes are so sweet and very welcomed. ❤️🥳❤️ DH bought us a new bouquet of flowers today and it actually got above freezing outside. Life is good and we work with what we have on any given day, and say thank you for the beautiful that appears and the friendships and support. Hugs to all Rhonda
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Morning all, just checking in to see how everyone is doing. We are under a blizzard warning here, @cookie54 @shanagirl @scgal08 and all who read along , I hope you and yours stay safe in the storm.
Feeling good, all is stable Happy Sunday ❤️ Rhonda1 -
Good Morning @rlschaller (Rhonda) and all my lady friends on this thread, Yes we are also on the Blizzard “monster Storm Warning. Yesterday DH & I went to the wild bird store and picked up some millet, cracked corn and mixed seed with black oil sunflower seeds for all the birds 🐦.and he also nailed the Mourning Dove nesting box up underneath our Front porch over- hang for the nesting pair who visit to nest. There are also red cardinals living somewhere in our yard and they love the black oil sunflower seeds. I hope they all ate a lot to give them the energy and warmth to weather this storm inside the big Holly bush tree in our front yard yard.It’s so tall that the electric wires and cables are being reached by it. We wanted to take some of it down but it’s really on the property line of our next door neighbor who rents the house so it’s really up to her land lord. He used to own the property where our house was built on 5 yrs ago but he sold it to the the contractor who built it. And now I’m thinking we don’t want to reach out to him and offer to pay to take it town because this holly bushe tree as tall as the cable wires is home and shelter to so many birds inside the tree.
So here at the Jersey Shore we are expecting 50 mph winds with the snow , Tomorrow I’m supposed to go to my follow up visit with my onc, and my XGeva & Fasoldex injections and most likely wont go because the road will probably not be cleared enough tomorrow, We did go the day after the last snowstorm on the turnpike all the way up. The roads were salted and bone dry so we had a clear path no traffic up to the Cancer Center last month and got in and out of the hospital right away because their was no wait……but if it’s still snowing we won’t take the drive up.
I’m wishing you all warmth, a warm blanket and cozy fleece sweat outfits, and some warm comfy food to eat to everyone while you wait this storm out. I’ll be roasting a pork loin mashed potatoes and buttered carrots today. I love you all my sista’s and brothers in breast cancer mets. 🩵🥰
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Dearest @shanagirl Barbara - we too feed the birds with a special mix of sunflower seeds and other seed. There is one pet store here in Hoboken that sells it, and my DH goes out and spreads it around under the tree and shrubs right next door to us, our neighbors hedge where there is a tree and shrubs. The tree grows right infront of our windows, and I get to watch the sparrows and cardinals, occasion blue jay perch and sing. The house is empty as it is owned by an LLC waiting for planning permission for alterations. We live on a historic district street, so, alterations are not generally allowed for exterior brownstones they may want.. such is city life. But to have the birds sing and be able to eat through the winter is a joy we share ! ❤️ DH also puts out almonds for the squirrels lol.. My cats have their own city wild life tv.
I hope the snow is not too bad out on the shore, given the warnings, and you can make it to your appointment. 🤞or be rescheduled shortly after.
Love warm blankets and cozy fleece outfits lol.. lovely. And your meal sounds yummy too. I cooked yesterday and today plan to bake biscuits with yogurt cream. I teach (online) and pretty sure all campus classes will be cancelled tomorrow 🤞❤️ or at least one can hope.. hugs to everyone.2 -
@shanagirl @rlschaller @scgal08 and everyone here, wishing you a peaceful Sunday before we wake up to perhaps heaps and mounds tomorrow! Hoping they're wrong lol as I was enjoying seeing the grass a couple days now. Cozy sweats on, baked banana muffins this morning and roast is in the crockpot. Relaxing day here but was stressed this morning watching USA men's hockey team quest for the gold. Was exciting yet nerve wrecking also lol. Oh you ladies are the sweetest taking care of all God's creatures. I'm sure they love hanging around your property where all the good seed is! Barb hope you get to reschedule your appt to later this week to allow the roads to be cleared. Sending cozy warm vibes for a relaxing Sunday♥️
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Rhonda sooo cool you live in Hoboken. I love it there! So many nice memories of going to restaurants there. It’s a lovely historical City. We are on the Barnegat Bay across the bridge from Seaside Heights Park & Island Beach. The Bay Hts been a sheet of ice, since th last snowstorm and freezing temperatures.
@cookie54 I’m so excited to have another Jersey girl to share with on these threads!. @rlschaller, Hoboken is going to get slammed by this Blizzard also. I will be thinking of you.
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Hi all,
It's so nice to get all your updates!
@rlschaller How wonderful Rhonda that your last scan showed what your MO called "remarkable results"! May all those good results continue. Thanks for the suggestion of CMF and I do intend to ask my MO about it. I have wondered about CMF while you have been on it, knowing that it is an old drug and the newer drugs tend to be used first. And my MO has emphasized that I've already had the "good drugs". That said, eribulin is an older drug, and I've now had three cycles of it. My skin mets look a lot better, though they are still there. Excellent that your skin mets are no longer bothering you, by the sound of it.
Hope that your classes were cancelled on the 23rd and that you had a quiet day. Those biscuits sound delicious.
@cookie54 And your banana muffins sound equally good Andrea. They must be long gone by now. How are you doing?
No blizzard here today but tomorrow is another day!
Take care all.
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@scgal08 Hi Rita, glad to hear your skin mets are reacting to treatment. A step in the right direction for sure, fingers crossed. Ha yes, with two guys in the house things don't last long around here lol,but I'm glad they enjoy it! PLus I love to bake more so than cooking. I'm doing ok thanks! Glad you didn't have to deal with any bad weather recently, this will be the most welcomed spring for sure!
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Hi gals, nice the weather is turning toward spring, after last weeks blizzard snow is now melting.
Rita- so glad your Mets are improving , that’s great news. Andrea- how are plans for your daughter’s shower coming along, if I remember it’s soon?All is well here, just got up from a nap lol.. love lazy days. ❤️❤️❤️ to all
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@rlschaller How bout this weather! I know it's not lasting long but I'll take anything I can. Yes the shower was Sunday and it could not have gone more perfectly! We enjoyed a beautiful time together, food, laughs and fun, was perfect! Theme was " Love is in Bloom" so my DH made the flower cart and I bought all the flowers an also made floral centerpieces for the table. Everyone enjoyed making bouquets of flowers to take home and have a little taste of Spring. It was very tiring but soooo worth it. Hope things are going well on your end.
@scgal08 Hi there, dropping in to say hi . Hope your feeling less fatigued post rads and your skin continues to show improvement. Hugs.
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@cookie54 love these photos, and your daughter looks so happy ❤️🥳 She is beautiful. And what a great idea to make bouquets! I can only just imagine the work involved lol… you and your DH did an amazing job. Congrats to all. I remember when my son had his wedding , it was the best day, you are going to love it.
I’m well, infusion #7 tomorrow, easily managed . Met with the RO and we Will do a little more radiation on the Mets that popped up on my shoulder and upper back in November, they are tiny and nothing new since then , but they want to zap it before it’s a problem lol. I feel like I’m the poster girl for radiation therapy. And yes, it won’t last, but Am loving the weather. I took this week off and went into the city to meet friends for lunch. Sunshine and 70s temp… so uplifting. I bought a vibration plate to see if it helps build up my stamina… it’s fun and good for the lymphatic system… will keep you posted if it works. @scgal08 hope all is well ❤️❤️❤️❤️
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@rlschaller Thanks, Rhonda! We are very excited for the wedding and May will be here before we know it! Well I'm glad they're being proactive of the last couple tiny mets. You have come a very long way with these mets and it's definitely worth the extra effort. Aside bring the poster child lol maybe they can throw in a BOGO deal. I'm just so happy that the we are able to lighten the situation. You certainly took off the right week , glad you fit in a nice lunch with friends. Hmmm ok lets see what the plate can do, it seems like it would help build strength for sure. Enjoy the rest of your week off🌷
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@cookie54 a May wedding how perfect. I’m so excited for you. And just saying I’m loving my vibration plate so far, it’s nice to shake things up lol.
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Hello all. Lots happening with you!
@cookie54 Andrea, your daughter is lovely, as are the shower photos. Thank you for sharing them. A May wedding is certainly something to look forward to and will be here before you know it. Do you have lots of preparation to do for it? I'm with you on liking to bake more than cooking. The latter is the daily slog, whereas baking is the something extra that you do for fun. I love fresh-baked bread.
@rlschaller I hope that the infusions are still going swimmingly. More radiation though! Good thing that they are going to get out in front of them while they are tiny. You've certainly had your share of skin mets + radiation!
I've seen mention of vibration plates on YouTube workouts, not knowing what they are. How is it going with yours? Shaking up one's workout routine is a great idea. I've only resumed working out (gently) in the last couple of weeks after abandoning all exercise when I got the brain mets in November. It doesn't take long to lose any gains you've made from exercise, unfortunately.
I completed my fourth cycle of eribulin today. That I feel fairly 'normal' afterwards makes me wonder if it's doing anything. Thursday's CT scan will show one way or the other. Does anyone ever get used to these scans, as in, having scanxiety or no? That is, anxiety about the results, not the scan itself.
Have a good week everyone!
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@scgal08 Hey there, thanks for the compliments. We are in pretty good shape with plans, my DD is very organized! She is now able to relax a bit that all the big tasks are completed. Now she is handling all the fun details with decor at the venue. It's so different today, I was married in the 90's and we just paid and showed up at the venue lol. Today there all all these "extra's" that are very nice but it's work and expense! Either way it will be a beautiful day!
I'm so happy to hear you are getting your energy back and you are able to exercise again! It stinks when you feel like you lost your stamina with exercise but I believe it was your good conditioning that helped you through also! It's ok , one day at a time. Oh the scanxiety is real for sure and can feel heavy. For me I tell myself whatever it shows I can't change and just try to prepare myself for the worse case scenario And no I don't think we ever get used to it…unfortunately..Know that we're there with you and I will ramp up my prayers for you tomorrow.❌⭕️
@rlschaller Glad you're enjoying the vibration plate! It's good to mix up our workout routines every now and again. I think it helps us to be more consistent with exercise overall. Hoping to get out for a long walk today but the winds have been brutal. Hope things are going well this week!
Hi to all here reading along, hope it's a peaceful day today🌷
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@shanagirl Thanks…so exciting!☺️
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@scgal08 @cookie54 @shanagirl and all reading along ❤️
I’m well, radiation starts Monday for 5 sessions every other day, so that should be easy and does not disrupt my infusion schedule. Tumor markers were normal for the first time in a year so that was nice and interesting, signatera test on the CDNA is still positive but I’m told cells are dying and that is what it is picking up on, and the redness on my stomach is not cancer but a reaction to the Keytruda and the MSK dermatologist prescribed a topical cream ! If only they had that for skin Mets 🙏. All is well today. Life is good. And still loving my vibration plate, it has helped a lot with restoring my energy , I do 15 min a day along with a YouTube video for lymphatic drainage by cancer rehab. Makes my body feel alive, I bout an inexpensive one, for $75 and glad I did.
Rita- hope today’s scans went well and you were able to just breath and be present. It’s all out of our control, so I don’t think we get used to confronting uncertainty but it is certainly the master class we are all enrolled in lol. 😂 Andrea I love preparing for the worst and then celebrating anything that is better… that’s a good way. My husbands advice is just shrug.. it is what it is and better to know so you can take control of next steps with placing everything in gods hands . That’s another way… love life, one step at a time. And let go of what we can’t control. As I said though, it’s a master class and not organic to the human mind ! Glad eribulin is easy on the body yeah ! CMF +K is too - we are lucky.
Andrea - MOB woo hoo. I think I said I loved being MOG ..it was the best day ..so much joy. Luckily I didn’t have any role in my son’s wedding, they did everything and I just had to buy a pretty outfit and show up and dance. Which I did. Enjoy the planning and share more pics! Have you bought your outfit yet? Make sure your shoes are comfy, that is my best advice.
Barbara - so nice to see you here ❤️ I read along in Mels thread but honestly all the posts are overwhelming ! Much love to you and yours.Happy spring equinox in advance 💐
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