De Novo Stage IV
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@kbl I’m so happy your tumor markers keep going down! Also that you’re able to eat more now, that’s amazing. Thanks for the update and I hope we continue to hear good news while you’re on Orserdu!
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@jobbibo thank you for your positive vibes! I can use every single one I can get. I’m happy to hear your MO is still planning on moving forward with the surgery. I wish for a good MRI result for you and a smooth recovery from surgery.
@kbl thank you for your kind words. I’m glad Orserdu is working for you and that you’re feeling well. And you’re eating! I wish you continued success and low tumor markers!
@illimae thank you for responding on the other thread. I appreciate it.
I’m not sure why my MO is suggesting Xeloda as the next line of treatment. We discussed it briefly over the phone and will talk more about it at my next appointment. She said I don’t have to decide anything right now.
I’m really trying not to freak out. But I am back to the feelings of panic and despair that I had when I was first diagnosed. Like the end is near. I know that’s not the case in the next day, week, month and hopefully year (and more) but it just feels like any hope I had for being living a long time given how well I’ve done on H&P is now gone.
Thank you for listening.
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@harrow I am so sorry to read about the brain mets and wonder why they would give you a placebo? At this stage, I don't think that is done very often.
I too, have heard of a lot of success stories with the Gamma knife.
I am on Herceptin and Xeloda, and if I have a recurrence, I think that my onc would suggest Tucatinib. I don't know much about Enhertu.
I am glad that your mastectomy went well and that should provide some relief for you.
Prayers for you!
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@harrow I’m so sorry you’re having to go through these feelings again. It’s not fair and my heart breaks for all of us going through life with this disease. I’m not even saying this to just to say it but I’ve genuinely seen a lot of people do really well for a long time with brain mets. I know illimae is a great example but she’s far from the only person! It’s still devastating to find the spots I’m sure and I hope over time seeing a good response to gamma knife that’ll help you start to feel a bit more at ease. I’ll be thinking of you and always here to vent to if needed. ♥️
@illimae appreciate you checking in even with having a blah day. I hope today is better!
@denny123 I’m on the same trial so can explain about the placebo part a little bit. I wish there wasn’t a placebo arm but the reason is because you’re still getting the standard of care either way. You still get HP in both arms of the trial which is what we’d be on without the trial. They’re trialing Tucatinib to be used during the first line of treatment so they have to have the standard of care arm to compare it to. It is frustrating though, always wondering if you’re on the real thing. I try my best to tell myself even if I’m on the placebo that I’m helping out to move science forward, but it’s easier said than done to stay in that mindset haha.
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@illimae I’m sorry I didn’t acknowledge that you were having a blah day yesterday in my response. That was really insensitive of me. The highs and lows of life are bad enough, let alone adding living with MBC to the mix. I hope you are having a better day today.
@denny123 thank you for your prayers and the hopeful words of hearing of success stories! I am scouring the internet for some. Bobbi Jo is correct about why I could be on placebo for Tucatinib. We don’t know for sure I am, that’s just my assumption based on the mets showing up so soon. I do think it was up there prior to TCH treatment starting, but I don’t know that for sure
@jobbibo thank you for the offer to vent! I just might take you up on that. I have two kids who still need me. And the thought of leaving them any time soon is almost more than I can bear. It’s what terrifies me the most. The pain I will cause them and how what may happen to me will forever change who they are. I am slowly making my way through the brain mets thread, looking for those success stories to give me hope. Yesterday I felt a similar way - why am I bothering with the trial when I obviously have the placebo? Why did I go through with the mastectomy when it isn’t going to matter anyways now? I know deep down I feel differently, but that’s where my head is at right now.
Thankful for you all!
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@harrow That has to be so incredibly difficult when you’re thinking about your children. I have these thoughts about my husband but can imagine it’s another level of pain when it comes to your kids, I’m so sorry. It’s more than valid to have those feelings.
There’s a woman named Terlisa Sheppard who publicly talks about her MBC, she’s had brain mets since 2003 and still doing well! I like to check up on her Instagram often and love the hope she brings. There’s also some interviews / articles out there where she talks about her brain mets as well if you feel like looking her up. Sending you all my love!
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Thank you @harrow I’ve been doing well lately!
Went on a short vacation with the husband this past week which was a nice time and felt pretty normal for a while. However after walking around the Mall of America for a full day I’ve realized my body can’t handle as much as it used to haha. I’ve been very sore since, but still glad I pushed myself a bit!
I have my next CT scan on April 8th then a bone scan / brain MRI sometime in June. Blood tests have still been good so far so just trying to stay calm with upcoming scans.
Hope everyone else has been doing well lately!0 -
@harrow sorry to hear about the brain mets. I’m glad they are only two and that they are small, but I realize that’s not much comfort as any active cancer is concerning. ((Hugs)) Wishing you good results with gamma knife or the next treatment option.
@kbl I’m glad to hear you are doing OK on Orserdu.
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@jobbibo Good for you getting away! It sounds like it was a much needed holiday. I hope the CT scan went well. Sending positive thoughts for good results! Please let us know how it went.
@cyathea thank you for your kind wishes! I ended up having one more lesion (4mm) found during the MRI prior to treatment. It was disappointing but not really unexpected as they said 30-40% of the time they find 1-2 more due to the double dose contrast and the 3T MRI. The RO didn’t seem particularly concerned. He kept repeating that it’s good they were all so small. They were also round and had clear delineation between them and normal brain matter. Said it was very straightforward. He seemed quite confident about the procedure for me. Hopefully he’s right. The procedure itself wasn’t too bad. The mask was very, very snug and I felt a bit of anxiety at first, but once I settled in, it was tolerable. It took about 30 minutes and then I was able to go home. I was at the hospital for less than 6 hours. Most of it was waiting around.
I saw my MO this week and she said that Enhertu would be my next line of treatment should I progress, like you ladies said. She must have misspoke when she said the Herceptin, Xeloda and Tucatinib before. For now, I’m staying on H&P and am able to continue on the trial. Pretty sure I have the placebo, but at least it gets me scanned every 9-10 weeks or so.
I’m still struggling mentally and emotionally, but feeling more moments where things don’t seem as dire.
Thinking of you all.
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@harrow I’m glad to hear the procedure went as well as it could and that they’re confident in treating lesions since they’re so small! I hope things continue to go well now on the trial, but it’s good to know what your next line will be. It’s more than understandable to be struggling mentally with all of this but I’m happy you’re starting to have better moments. I’ve been thinking of you, thanks for updating us.
My CT scan was overall good! My biggest liver lesion shrunk by a couple millimeters, everything else is stable. However, they saw a 4.5 cm adnexal “cyst” that wasn’t there before. When I talked to my team they said it’s good they listed it as a cyst, didn’t even mention it under the “impressions” but they still had me go in for a pelvic and transvaginal ultrasound today. I had been having weird bleeding when I switched from Lupron to Zoladex and 3 weeks ago finally switched back to Lupron, they’re hoping that’s what’s caused this. But now waiting for those results and wondering what they want my next steps to be. In late February I also had a transvaginal ultrasound where they found what they suspect was a fibroid within the muscle wall of my uterus but this is a new spot. I was already thinking of getting my ovaries removed but now with all of this stuff popping up I might consider a hysterectomy, I’m not sure. Keep wishing there could just be a period of time where nothing weird is going on but oh well. Trying to remain calm!Hope everyone else is doing well! ♥️
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@illimae your experience continues to show me that there can be hope, so thank you for sharing on this site! I cling to your story, along with any other stories of longer-term survival that I am coming across as I go through the other threads. Some days though, it’s so hard to feel any kind of hope even though I’m doing ok relatively speaking.
@jobbibo congratulations on the scan results! That’s really good news that there is reduction and stability. I had to look up what an adnexal cysts is. It says that they are usually caused by hormonal stimulation or bleeding at the time of ovulation, so that would make sense to me to be related to a hormone drug. But why one over the other, I wonder? I also read that it can be surgically removed by laparoscopy. I hope that’s all it turns out to be and that it resolves itself back on the Lupron. I’m sorry that the new weird spot on your uterus wall is causing some stress. Hopefully the results from the ultrasound will provide a clearer picture to help guide your decision re: hysterectomy. Please keep us posted on what you decide. I’ll be thinking of you and sending positive thoughts your way.
I hope everyone is doing ok!
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@harrow I am so glad that all went well for you and hope that everything continues to improve.
@jobbibo yay for shrinkage of the liver lesion and hopefully the cyst won't be there with your next scan. In my 22+ years of scans, I have weird stuff showing up that goes away with my next scan.
Herceptin today for me and I think that I have finally figured out why I get the shivers during the infusion. Turns out that it is just chills…maybe because the Herceptin powder is refrigerated. So now I ask for a 45 minute infusion instead of 30 minutes, hot chocolate, heated recliner seat and 2 warm blankets. So it isn't an allergic reaction to Herceptin and the antihistamines really made the tremors much much worse. Not taking those anymore.
But when I get home afterwards, my BP has gone as low as 64/47 and I have a 103 fever. I worry about having a stroke. I apparently have post-prandial hypotension, which makes my BP go very high before I eat, and very low after I eat. So those big deviations aren't good.
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@denny123 thank you! I appreciate the well wishes. I’m glad to hear that it’s not an allergic reaction to Herceptin! Warm blankets and hot chocolate sound like an excellent way to get your meds 😊 the fluctuations in BP do sound concerning. I have never heard of post-prandial hypotension before. Is there medication you can take or changes to your diet that can help? I’m sorry to hear that. It must be very scary when that happens. Ugh. You shouldn’t have to deal with this on top of everything else.
Thinking of you all! Hoping everyone is doing ok.
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Hello everyone,
congratulations to Jobbibo for the stable scans, that's fantastic news!
KBL, I am really happy to hear that Elacestrant is working well for you, you've had a rough path and this med might just be your magic.
Harrow, I'm sorry to hear about the recent progression. Mae has a wealth of knowledge and shares good advice, she also helped me a lot at the beginning of my prognosis. Mae, I hope you are doing well.
I had my annual spinal mri, and it reported something unusual around 2-3 centimeters in my thoracic cord. so the mri will be repeated in a few months, hoping it is nothing serious. I am developing a rare sf of Xgeva which is bone loss in the jaw! I was recommended to extract 2 teeth. I already have one tooth extracted for orthodontic treatment so with this I won't have any teeth on one side! great just great in this age! off the Xgeva for not sure how long, another cause for worry.
The recent scan showed my breast tumor is still growing. finally my MO agreed to local therapy but not surgery I wanted. The MO and RO are pushing me for palliative hypofractionated radiation. when they use "palliative", it hurts me a lot, because I don't see any effort to do a better job. I am not sure if this is the only option I have. please share your words of advice on this @moderadores , everyone ?
since I now have mets in both lobs of my liver, I prefer to have my liver monitored every 3 months. with this high dosage radiation, I am not sure when I will be cleared to get the next ct scans. Biopsy can't be performed after radiation, so we won't know if the tumor status has changed. I see those who done mastectomy have more years of being NEAD, but the only reason my MO can offer is that the healing time for radiation is shorter than surgery! a tough decision….
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@snow-drop lol, what a day to hope I’m doing well. It’s actually a fantastic day, the weather couldn’t be more perfect, I’m sitting outside, listening to music and drinking what will soon be my 2nd margarita. Today is everything I hoped for on the darkest day. It took a while to get here but I have arrived and am so grateful for it. My current view.
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Hi, all!
@snow-drop Thank you. It’s good to see you here.
My grandson was here for a few days, and I always get sad when our visit is over, so I’m not wanting to do much. I am thinking of you all.
Beautiful view, Illimae.
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@snow-drop so sorry to read what all you are going through and I pray that everything gets a whole lot better!
@harrow thanks. My Herceptin on Friday was okay at the center. But when I got home, I had the shivers and head-to-toe aches. I tried to sleep, but wasn't able to for hours. So now I guess that I should have hot broth when I get home?? I take a Tylenol at the center, but will also take Motrin when I get home, if I get achy.
With the post-prandial stuff, I am trying to eat a little bit every 2 1/2 to 3 hours. That keeps my BP pretty steady at about 145 systolic. It still tanks afterwards, but not as bad as when I eat a normal meal. But I am constantly eating and am still hungry after eating 1/2 of a sandwich or a cup of soup. But that is the only thing that I can think of to do.
I am on BP meds and also a beta-blocker which I take in the evening, since that is when my BP starts to rise again, since I don't eat after 7 because of my Gerd.
On a positive note, it is finally looking like spring here in PA. Lots of rain, but we should have temps in the 70's. I am looking forward to planting my flowers and veggies. Not looking forward to pulling the millions of weeds that have sprung up everywhere! We had a warm-up a month ago and everything started to bud. But then we had many nights of frost, and I had to constantly cover my flowering shrubs with sheets to protect them. But everything looks like it survived so far.
Denise
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@snowdrop I’m sorry to hear about the bone loss in your jaw. I hope it’s not too painful and that it stops with coming off the medication. I also hope the unusual spot on your thoracic cord is nothing. I don’t have any experience with, or knowledge about, hypofractionated radiation, but can empathize with the use of the word palliative. I know, medically, it doesn’t mean what many people associate it with, but lots of people do associate it with “the end is near”. I know I do, so I would prefer my treatment team not use it either. Are you able to get the liver biopsy done before the radiation? I wish you the best of luck with the procedure! Keeping you in my thoughts for your treatment and upcoming scans.
@illimae that is a gorgeous backdrop you have there! I love those trees. Thank you for sharing.
@kbl I’m happy you got to spend some time with your grandson! I hope you got lots of cuddles and hugs.
@denny123 I’m glad you’ve figured out something that helps a bit with that blood pressure issue, that doesn’t interfere too much with GERD. What a balancing act this diagnosis seems to be! Enjoy your spring-like weather!
Keeping you all in my thoughts.
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This seems the place to introduce myself. I went for a routine annual mammogram in August and have had a wild ride since. I had a 2cm tumor, grade 1, ER+ PR+ HER2- with spread to lymph nodes. After the flurry of scans, I was advised that the lesions in my bones and the nodule in my lungs were very likely not cancer. I was treated initially for locally advanced cancer. After AC-T chemo I had another scan and a bone biopsy was ordered. The rest is history. I have no idea how a smallish Grade 1 tumor could have gotten all over the place, but here I am with Stage IV. I did have a lumpectomy in the same area 25 years ago, deemed benign with atypical cells, and had scar tissue there, but the onc thinks it very unlikely that this was a cancer that was dormant for so many years. I'm now on my first cycle of letrozole/kisqali/zometa. I've been lurking for a while, but I find the discussion here really heartening. My onc told me that she's reluctant to give a prognosis these days because people are living longer and the research is so dynamic. Thank you for your stories, which I hope you will be telling for a long long time.
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@tougholdcrow Welcome, and I’m sorry you find yourself here. I wish you great success with the treatment. I was on Ibrance and Letrozole for two years, but there are many who get much longer out of the CDK4/6 and AIs. They have come out with quite a few more options, even since I was diagnosed. I’m now on Orserdu, which was only approved in January of 2023. It seems to be working for me, and I’m so grateful. I’m in my seventh month.
Please keep us updated on how you’re doing as the months go by. The beginning is the worst until a plan is put in place. I’m glad you have yours and have started the treatment.
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@tougholdcrow, welcome to the community! We're glad you found your way here, although we wish it were under different circumstances. We hope you'll find support, encouragement, and comfort here as you navigate this new phase of your life. You're not alone! Let us know if can be of any help, and please keep us updated on how you're doing.
We're thinking of you!
The Mods
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@kbl I also wish you great success with your new treatment. Thank you for the kind words, and I hope to know you for a long time.
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@tougholdcrow Sorry that you have to be here but the best of luck to you! We are all here for you!
Denise
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@tougholdcrow I’m sorry that you’re here. This is a wonderful thread full of support and knowledge. I can relate to being told you’re an earlier stage only for it to turn out not to be true. It’s a hard pill to swallow for sure. I still struggle with acceptance and I’m 8 months or so out. Thinking of you!
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