How long have you been Stage IV?
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@livinglifenow Pam, I will definitely keep you posted! I hope you have a wonderful day!
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Hi all! Wishing everyone a happy valentines and galentines day! ♥️♥️ Found gorgeous yellow roses downstairs - my DH is the best!
A few updates, finally got Kisqali approved and should have it to start Monday/Tues. Appt with MO on Monday should be enlightening - we can review the spinal mri and cytology results of bone biopsy. From what I can decipher, the biopsy indicated bc like what was found in pleural effusion weeks back. To me that is good news 🥳
@ssales13 I may be joining you of the golf front! DH plays and has been pushing me to learn. I fully agree with Pam @livinglifenow that being outdoors in beautiful surroundings for hours at a time can’t be beat, I think I will give it a shot. Anything to keep moving and being! In fact, if I get go ahead from doc, I will start strength training again next week. Come spring (and I do feel it in the air here in the northeast), I will do as much physical activity as possible/safely reasonable - you all will spur me on! The more I say and plan it, the better chance it will happen 😂 This lazy Lima bean will move 💃💃
@emiliamarty hoping you are feeling comfortable! Sending virtual hugs!
Wishing everyone a wonderful, calm, fun and pain free weekend!!
🤗juliana0 -
@EddieJ Juliana, Happy Valentine’s Day! I’m glad you were approved for the kisqali. Please let me know how you do on it. I should know by the 25 th of this month if I’m approved and will be starting it or if I’m going on another medication. Yay on the golf!! I’m so looking forward to warmer weather.
@livinglifenow Pam, Happy Valentine’s Day as well. I hope you’re having a wonderful day.
@emiliamarty Hope you are doing well!
Keeping you all in my thoughts and prayers! Have a great weekend ❤️
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To all the wonderful people on this thread… Happy Valentine's Day! 💝
@EddieJ Juliana, glad you are starting on Kisqali soon. Start kicking those nasty cells out of your body. And so glad you plan to take up golf. For me it's all about spending time outdoors and with people I enjoy.
@ssales13 Stacey, I'm keeping you in my thoughts and prayers for lots of great treatment options! And fun on the golf course this spring.
@emiliamarty , wishing you a wonderful weekend.
Hugs, Pam 💗
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originally 2a- stage iv for 8 years in May
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@finallyoverit, congrats on being stage IV for almost 8 years. I hope that the journey has been fairly smooth.
@EddieJ Juliana, @ssales13 Stacey, and @emiliamarty, hoping you all are having a great week. I had my 8th HP infusion yesterday. Feeling great except for the ever present Perjeta itch! I will just have to grin and bear it or, in this case—grin and scratch it!
Hugs, Pam 💗
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@finallyoverit Congratulations on the 8 years! I hope you are feeling great. @livinglifenow Pam I’m glad your infusion went well! Sorry about the itch though! @EddieJ and @emiliamarty Hello and hope you are doing good! This has been a quiet week for me as far as having stuff to do so I am enjoying it. I go to see my oncologist next Tuesday. You ladies are always on my mind and in my prayers. I hope you all have a wonderful day today.
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I'm 18 mos out from the start of this thing. Tumor markers have gone steadily down, first on AC-T chemo, then the standard Kisqali-Letrozole combo. CA15-3 is now 22 from astronomical highs when the whole business began. Scattered bone mets in my lower spine and hip are stable and not visible at all on bone scans. The nodule in my left lung has been absolutely stable, so as the months go by, there is less and less chance that it is cancerous. I had a small blip when a tiny new ground glass lung nodule turned up on the latest CT scan, but I have been assured that there is little cause for concern. I thank modern medicine for the excellent research and the new wonder drugs and, like @finallyoverit and many others here, I plan to be around for a long time, living my best LIFE.
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@tougholdcrow so glad your tumor markers are steadily going down and your bone Mets are stable! That’s great news. I’m thankful for the medication as well and all of you wonderful ladies who come on here to give encouragement to us newly diagnosed. I hope you have a great day!
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@tougholdcrow, glad to hear your treatment is moving in the right direction.
Wishing everyone a great rest of the week!Hugs, Pam
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Hi kids! @tougholdcrow Congratulations on your treatment success and good health! Your success gives me hope considering I also have lung issues and multiple bone mets. Plus, my CEA and CA 5-3 tests are astronomically (great descriptor!) high and even rose this past month. Not good news but I have to be patient since I have only been on letrozole for a month and started Kisqali this past Monday. Being a newbie - shout out @ssales13! - my mo and his team told me to keep the faith, not over research and live life to the fullest. I will do my best!
My spine mri indicates the possible need for kyphoplasty to fill in some holes in a couple or 3 vertebrae. @emiliamarty Did you have this procedure? Can’t believe the cancer has gone this far and I don’t feel a thing. I AM SO THANKFUL!! They usually do this procedure to ease pain but I believe they may recommend for me to help provide stability. I meet with the Interventional radiologist in March to decide next steps. Still heading back to my spin class next Tuesday- will do slow but steady bc I have to move this body!!
I so agree with @tougholdcrow’s perfectly written note “I thank modern medicine for the excellent research and the new wonder drugs and, like @finallyoverit and many others here, I plan to be around for a long time, living my best LIFE.” God bless scientists and their perseverance and hard work!!Have a wonderful weekend all! juliana
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@EddieJ You might be experiencing a flare, which can happen at the beginning of treatment, so hopefully everything will start improving soon. I had a few spots light up more brightly at the beginning. I broke a rib during chemo and had no idea. Hopefully you can get some good advice here on kyphoplasty. The researchers are still trying to figure out how important exercise is in a metastatic setting, but I have to believe it can only be to the good. I do pilates three times a week to keep my skeleton strong, and do lots of walking with the furious attitude, "F**k you, cancer." Also, it is good to take D3 in this gloomy weather.
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Hi Eddie, Pam, Juliana and everyone (heavily drugged so apologies for any missing persons). It has been an EVENTFUL couple of weeks.
Firstly, I have not been offered kyphoplasty. The only non systemic treatments I’ve had are radio to C3/C4 and more recently to L4 and a few more Ls whose numbers I forget. But this might change shortly.
Latest PET/CT shows a new intraspinal lesion at T11 and general progression elsewhere, hips, ribs etc. We will be following this up with a full spine MRI on Wednesday. So bye bye to Everolimus. The results from the head and neck MRI are, forgive the language, a clusterfuck: the intense jaw/ear/cheekbone/eye socket pain seems to originate from the clivus and temporomandibular joint lesions, while the osteonecrosis is lurking with evil intentions in the marrow of my mandible.
I was doing reasonably well on the crutches but come Thursday my eye pain was seriously debilitating and the eye was swelling and weeping. My skull felt as though it was jammed into a child size motorbike helmet (still does). I also had a rash on my temple, which I assumed to be from evorolimus. Not so. The following day I was rushed from the results appointment to urgent care and given IV antibiotics, suspected ocular cellulitis, and then there was a search for a bed in a hospital that had eye specialists on duty over the weekend. I ended up in one that didn’t have that but had someone on call on Saturday who did an eye CT and diagnosed shingles. (He was also a complete dick to the nurses.) By this point I looked like the Elephant Man’s twin sister and was in extraordinary pain.
It was an education moving from a very good, calmly run specialist hospital to a large, badly underfunded and demoralised general hospital. No one read the handover notes and medical history. People kept trying to do injections on the wrong arm (mastectomy side). There was confusion over pain medication. It was chaos with banging doors at all hours and dementing or otherwise ‘altered’ patients shouting and groaning. Anyway, fever spiked on Sunday. Much vomiting. Antivirals. Antibiotics. Fluids. Oxygen. I begged to have the drugs in oral form and come home, and was released on Monday evening.
I have never been so happy to be home. I should also say that my son and my friends, particularly the one who thought we were going out for valentine’s cocktails when this all started and stayed with me through Friday and Saturday, have been magnificent. The cat was fed and cared for too. I am getting better, a little bit, day by day. So once this is cleared, the choice will be between navelbine or taxol. Thoughts?
Apologies for the rant. Love to you all, brave women!
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Wow, @emiliamarty , what an ordeal! What a saga! Too intense for poetry, at least of the garden variety. I'm so glad you have loved ones nearby to see you through all of this.
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@emiliamarty Never apologize for a rant - if anyone understands it would be this crowd of loving caring souls! So happy you had your DS and loving friends there when you needed the support. Sending you strong healing thoughts and lots of virtual hugs! @tougholdcrow Thanks for the flare up info - didn’t know but now I do! I will def research the kyphoplasty on this site 👍
@livinglifenow hey Pam, hope the itches are fully gone!!
Keep in touch all!
Happy Friday 🍸 juliana0 -
@emiliamarty Wow! I’m so sorry you have had such a rough time! Im glad you had some help and you were not alone. I really hope you feel better soon. Take care.
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Emiliamarty - Unfair is an understatement! I cannot believe what you have been through. My heart goes out to you, and I wish you all the best as you recover and perhaps start a new treatment plan.
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@emiliamarty OMG! What a story! and a true one at that. So sorry you had to go through all of that. Glad you had support from friends and family. I've not been on navelbine or taxol so can't comment on either. Wishing you fast healing and a good plan moving forward.
Hugs, Pam 💗
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so … I haven’t been in here for a loooong time. I was diagnosed stage iv at 39 years old 23 days after first hearing the words “you have cancer and it’s bad” (12/21/2005) …. so basically from the beginning. That was 19 years ago!!! And they gave me 2-2.5 years expected survival time.
ER+ HER2+ bone mets
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Hi @livinglifenow Pam, I went to see mo yesterday. I was approved to take Kisqali it should be delivered to my house by next Thursday. I asked about the difference with the hers 2 on the bone biopsy she said it was a little different but still considered to be hers 2- for right now. I also had the genetic test done and there was a mutant strain or something like that ( I can’t remember what it’s called) that gives me another medication option later down the road. She also examined me again and measured the tumor in my breast and it has went down with the anastrozole so we were both happy about that. Otherwise everything is ok. It’s beautiful here today! I hope you are having a great day!
To all the other Ladies on here I hope you all are having a great day as well!❤️1 -
@ssales13 Stacey, I am so glad that you finally got to see your MO. And that, only on the anastrozole, the tumor has gone down. That is excellent news! Also glad you were approved for the Kisqali and will start on it soon. It sounds like you have lots of treatment options and the first one is already working!
My DH and I spent 4 hours yesterday and 4 hours the day before that brushing sealant on our new stone that was put down on our patio. I haven't been so tired in a long time. However, we had great weather and the patio looks beautiful, so all good.
Weather is now conducive to golf so we have a few rounds planned this weekend. I just have to remember not to overdo things or I get tired and cranky! 😜
Best wishes for a wonderful weekend to all of you!
Hugs, Pam 💗
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@livinglifenow Pam, I’m sure all that hard work paid off!! I bet your patio is beautiful! I hope you have a great time playing golf. I’ll be golfing soon with my brother lol he’s so excited to get me out on the golf course! Until I brain him with a club trying to hit the ball 🤦♀️ I know what you mean about tired and cranky lol it doesn’t take much to wear me out. Hope you have an awesome weekend!
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hi kids! Been busy but keeping up to date 🤗 @tami444 19 years and still going strong 💪 beyond awesome and incredibly inspiring! May your good health continue on this great trajectory 🚀🚀
@ssales13 Stacey, love hearing your good news! Hope adding Kisqali kicks butt even more! I just started my second week of Kisqali. Other than some indigestion for an hr or so after I take it (I decided to take around bedtime), I am not feeling any overt side effects so far. It might actually be helping me sleep a bit better thru the night… still assessing.
My energy level is good these days! Been busy most days and am back to the gym too! I even made my 9am spin class on Tues - first time since early Dec! I really hope this energy level lasts and means the meds are working. I know my attitude is important but would love to have some positive test results too. Embracing optimism!!@livinglifenow hey Pam, enjoy the patio, golf and outdoors! I am looking forward to when we can unpack our patio furniture for the spring. We may be adding a new dog to our home then too! Our beloved Eddie passed away this past July and we miss him tremendously. A new furry friend is on our horizon!
TTFN! Sending good health vibes to all! juliana1 -
Well I finally decided to post, I was diagnosed stage 4 last September. Lung, liver, bones. I have 2 pleurex drains inserted that are drained 3 times a week, started Kisqali back in October. I’mtrying to stay sane at the moment. Thinking too much. Im wondering if anyone has a similar situation as I do. Side effects for Kisqali have been a bit rough, nausea and vomiting mostly. My dosage was reduced to 400 mg to try to calm down the nausea.
I was first diagnosed in 2012 so it took 12 years to come back, I am still in shock although I was always looking over my shoulder.
Sorry for the long winded first post but looking for some comfort at this point.
Gentle hugs to everyone,
Lafish
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Hi @lafish , this site is the right place for comfort so I’m glad you decided to post.Im really new to this stage 4 mess as I was just diagnosed in November 2024. I’m sorry you are experiencing nausea and vomiting on the Kisqali and I’m glad they lowered your dose. Hopefully that will alleviate all of that. I’m due to start Kisqali next week. Keep continuing to post you will meet a lot of wonderful people on here and get encouragement and comfort. Sending hugs your way.
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hi there ssales13, thanks for your quick reply 😁 I’m definitely reading some very hopeful posts, it’s amazing what possibilities Kisqali provides. Happy to hear your starting soon.
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