Bone Mets Thread
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@katyblu No need to apologize for letting out your concerns and needs. That's what we are here for. I'm sorry this scan was a stinker and I hate you are alone right now. I'd change the schedule, too, for future needs. I know military family can be close, but it of course isn't your immediate family. I still can't get an understanding of bone mets, when is it considered "bad" enough for Radiation, or time to change systemic treatment. I wish for you that you find that med, have little to no side effects and get back to your normal.
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@katyblu, we're truly sorry to hear about the news you've received. It must be difficult to face such news your loved ones are away. Please know that you're not alone in this community, so feel free to reach out whenever you need to talk or share; we're here for you! 💌 And if you feel comfortable and ready, we have Zoom meetups where other stage-IV members share experiences and provide mutual support in real-time. Check them out here: Virtual Community Meetups
Hope this helps, and we hope you have a good response to your next treatment.
Sincerely,
The Mods
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katyblu, I don't think I responded already, but I just wanted to say that I'm sorry and just wanted to give you a virtual hug. Cancer always sucks and it's harder when you're alone.
I hope you can get a treatment plan that helps your pain and that you can find some kind of local support system.
Carol
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Kbl, irish, Mods, and Carol…. Thank you! It always helps me to know I can come here for support. I got to meet with my MO today with my husband (who drove 2 hours to be with me!) and I think we have a plan. Turns out I have the PIK3CA or whatever mutation. While my MO originally was on the piqray team, I told him I knew about all the side effects (from here mostly, all that research last night!) and I didn't want to go through that. But since someone here posted a zoom talk with a doc from Dana Farber that talked about a different drug in that same drug class, I was able to research that drug which has a way better toxicity load. And it was just approved by the FDA in November!! So our plan is to start treatment with capivasertib and fulvestrant as soon as our pharmacy can get the new drug. Plus I'm going to get another biopsy to check for hormone status just to make sure we're on the right track and to see if I am HER2 low for treatments later. Then I'll go in for radiation to the hip, my main pain center.
So I'm glad we have a plan. That helps the anxiety a bit. It brings up new anxieties, but I will deal with those when treatment starts. In the meantime, I'm going to fill the silence so my brain doesn't wander and figure out a new pain regiment.
Thank you ladies again! I really appreciate being able to vent somewhere where everyone understands and can really empathize.
Katy
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@katyblu YES!!!! You go girl. I just love to hear a story about a patient that researched creditable sources, armed themselves with facts and then advocated for themselves to come up with a treatment plan that makes the best of a crappy situation. Your plan forward sounds solid. I think it ticks all the right boxes. Now that you’ve done what you can, take a deep breath and don’t let what you can’t control take away today’s peace. Best of luck with capivasertib/fulvestrant!
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Hi Ladies: I am new here. After 10 years, i have relapsed and now have mets in pelvis. It was an accidental finding, MRI showed multiple spots on pelvis. I had biopsy got results, and am now waiting for treatment plans. I am very nervous and anxious. I am hoping you all can help me navigate this thank you so much.
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@katyblu Im so happy you know about the new treatment. I’m also on a new treatment just FDA approved in January, Orserdu. I was found to have developed the ESR1 mutation. I’m so grateful they come out with new meds to help cut down on the toxicity. I’ve only been on it two months, so we shall see. I can’t wait to hear how it’s going for you once you start.
@jen1 I’m so sorry you are here, but the support you will find here will be incredible. There is lots of knowledge. Once you have a plan and start treatment, the anxiousness usually settles just a little. Please ask away if you have any questions.
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@jen1, you're in good company here, although we're sorry you had to join this group. If there is anything we can help you with, please let us know.
Sending warm hugs,
The Mods
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Katyblu, I'm also cheering for you with this new treatment, that it will work well for you, and that you knew enough about it to advocate for it. So good to hear that your husband was able to join you for your MO appt, too.
RK, good to see you! Are we still taking a sleigh ride this year? 😉
KBL, I'm hoping the Orserdu works well for you, and that the side effects are tolerable, I know one person in my local support group who's on it and is doing well so far.
Jen1, welcome, and I agree with what's already been said about once you have a treatment plan and get started on treatment, that will help a lot with the emotional weight of all this.
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@sf-cakes I can’t believe you remember our virtual sleigh ride with hot chocolate and YOU singing carols at the top of your lungs. 😁🎄I’m getting Y90 on my liver for Christmas this year. I’m wondering what will glow brighter…my Christmas tree or ME. 😂
@kbl When I hear of women on these newly approved drugs, I’m forever grateful to scientists, clinical trial participants and all the others that help bring these drugs to market. I hope you do well.
@jen1 I’m sure the news was shocking. Allow yourself to grieve but if you find yourself wallowing in it, ask for help. There is no shame in asking for help be it via counseling or medication. As others have said, once all the initial craziness is over and you’ve settled into a treatment plan, things will get easier. Hugs.
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@rk2020 Me too. I am having a few issues right now at the end of month 2, but my bloodwork is really good. I’m just going to hang on and see if they clear up. I do need the usual nap daily, but I woke up last night with chest/back pain. I just ate and feel like the food is caught just below my throat in my chest, but I was able to eat. I’m wanting to say it’s The GERD that I have. My blood pressure and SPO2 are good, so I am not thinking heart. My lungs are clear. I think it’s just GERD.
@sf-cakes Sorry, I forgot to tell you thank you. I hope they do well on Orserdu too.
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OMG ladies I feel all the support. Thank you so much. My first question is 1) I officially got biopsy results from nurse practitioner on Monday dec 11/ (I saw them online Saturday (12/9) But my appt. with my oncologist is not until Dec 20th. I am anxious why not start me on treatment right away?. Is this a long time to wait?
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jen, I know the feeling that it seems like it’s taking forever, but doesn’t seem too unreasonable of a wait. I’m glad you can get in before Christmas. Not sure what kind of treatment you’ll be placed on, but if it is something taken orally, it shouldn’t be long before you start that after seeing the oncologist. Wishing you all the best!
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@jen1 Im not sure what your results say, but to give you context for me, I have lobular, and when the symptoms in my stomach started, I had no idea it was cancer and waited six months before having an endoscopy. I had it on April 23, 2019. They got the results and wanted more samples, so I had a second biopsy on May 17, 2019. I saw the oncologist in early June and started treatment in mid June, so about two months after my initial endoscopy. I got the first results on May 1. I think your timeline is okay. I know it’s really hard to wait.
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Rk, thanks! I really want a good QoL so I try to research and understand as much as possible. And I definitely do not want to become diabetic or to have to be on a low carb diet.
Kbl, good luck with your new drug! I am so grateful for all these new treatments coming down the line for all of us. I'm very optimistic (at least on the outside) for my new treatment.
Sf, thank you! Jen, I'm sorry you had to join us, but welcome! We are always here to help each other!
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I spoke with an oncology genetic counselor yesterday. We're going to run some more tests (shouldn't cost a lot) to look for other genetic markers—I forget the term she used. I've had two uncles with pancreatic cancer and she wants to look for that marker. They'll send me a kit with the vials and I can go to any Scripps lab and get my blood drawn and then mail the samples to the testing place. This could be interesting…
My new drug (Truqap) is on its way to me, but I can't start it until I have completed the radiation to my esophagus—and, of course, insurance is denying the radiation. RO is appealing and jumping through their hoops, so hopefully that will move forward…
Carol
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Hello friends, I'm curious if anyone has had surgery for a vertebrae fracture? I had a vertebroplasty earlier this year, but unfortunately the bone has not healed at all and it's getting worse. I spoke with a very nice surgeon who recommended an internal bracing procedure, where he would insert a rod and some screws to keep that vertebrae in place, with the goal of obviously keeping any bone from getting into the spinal cord.
As much as the idea of surgery on my spine freaks me out, I share his concern about the continued fractured causing spinal cord problems. Ugh, cancer and the side effects of cancer are really something...
Let me know if you've experienced something like this and what your thoughts are about it. Thank you so much!
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Sfcakes - First time ever doing this on my phone. I've been aching and hurting so badly that I can't sit at regular computer and type. I have vertebral fractures, a sternum fracture, and several rib fractures and saw neurosurgeon about the surgery possibility re spinal fractures. Like Shanagirl mentioned in the living room, I was very wary and pretty much figured he would recommend surgery, because he's a surgeon, and that's what he does, etc. He turned out to do much the opposite. He told showed me all about the rods and screws ( spinal fusion) and told me that he didn't think my situation warranted doing it, even with the pain level I have. He said the surgery comes with the possibility of all sorts of irreparable complications and that if anything else at all can help, a person should stick with that and not do the surgery. His note in MyChart added that he would only recommend the surgery if the pain became completely intolerable. I saw your posts here and wanted to let you know what I heard ASAP, so you could maybe do some more thinking before talking any action if you want to. Also, totally off the top of my head, but you are in San Francisco and I am in Seattle, and we both get a lot of the same weather systems - especially these "atmospheric rivers", " pineapple express" and more. I had a great low pain weekend, got out for walks, and felt much better than I had been, and then yesterday got hit with all this agonizing joint, muscle and bone pain again. Even more this morning. Yesterday, I had no idea what was wrong and almost went to the doctor. This morning I woke up and heard the rain outside and it hit me: it's the weather! The weekend had been sunny. Now it's raining with low barometric pressure and I've noticed a pattern this fall. I chalk the really bad pain episodes up to the estrogen deprivation from fulvestrant ( letrozole could do same), and the weather.Only ever experienced mild aches and pains with bad weather before estrogen suppression. Sorry for the ramble and this is all just my opinion. I don't type well on my phone and am in really bad pain right now, but wanted to respond. Probably lots of typos too. I'd get another opinion or two if it was me, before I had the surgery. Could be a "seasonal" weather related issue? Could anything else possibly help rather than surgery? Good, good luck and I'm sorry to read about your situation.
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Threetree, thank you so much for responding at length, especially when you are in so much pain. I hate that for you.
My pain is mild to moderate, but the concern is that my one fracture, at T9, has continued to compress and is now at 80% compressed. The big concern is that bone will get into my spinal cord, and thus far there are no other treatment options, other than to wait for that to happen? Which of course freaks me out. It's already close, according to recent MRI scan.
The T9 bone, even despite the vertebroplasty I had earlier this year, simply won't heal. Doc thinks it's dead due to cancer and radiation. Given that I only have the one fracture, and the vertebrae on either side appears fine, that's why the recommendation.
I've sent additional questions to my doctors, and am trying to take some time to consider this.
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@threetree thank you got your comment, I definitely notice changes in the weather affect me. I have almost gone to the doctor many times before realising the pattern. I almost posted here but was too embarrassed!
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Thank goodness I'm not the only one. Some people don't believe the weather can do that sort of thing, but for those affected it is very real and even debilitating at times. I think it's one of those things where some people get it ( the effect) and some don't. It's the one's who aren't affected who don't believe it. I think that contributes to the part about being embarrassed bringing it up with anyone.
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Hi everyone. I do believe weather affects the pain level. We use to think it was a joke when Great-Grandmother use to say "my rheumatism is acting up, so it's gonna be bad weather" (said with a Penna. Dutch accent). Now I "feel" it. Tonight it's 45 degrees, damp and windy. Yucky weather. @sf-cakes No surgery, but I too want to wish you the best with whatever you decide to do. @threetree You did a great job with your phone. I am so sorry that you are in such pain. It's so difficult to accomplish much when in pain. Someone here at b.c. uses tramadol. It's on my list to try in the near future. @sunshine99 It's ridiculous that you are still waiting on insurance. You've been thru far too much to be stuck in a holding pattern. Nice insurance people are well, nice, but they need to move things along for your health. I hope it happens soon and your new treatment plan does the job.
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Hi Ladies, I wanted to give you all an update. I saw my oncologist yesterday. She confirmed that the breast cancer has not changed it is still estrogen positive 90% 40%proges HER 2Negative, I am having PET scan tomorrow/She said that was good and the medicine she wants to put me on (unless some unforseen comes up on PET scan)the women in her practice do very well for a long time. CT scans showed my lungs clear. So far in pelvis and some other areas around hip.The medicine she mentioned is faslodex and verzinio. I wanted to start immediately but she wanted to get the PET scan and they were able to schedule me immediately. I did have concerns because she said she thought I would do very well but she said there is a clinical trial in January with a promising medication that I might qualify for. That was confusing to me. She said I would still be given standard of care but if I entered the clinical trial I would have to go through strict protocol and I would start medications within the trial. I listened but I am going to tell her no, thats to much on my plate. I would rather go with what she said would be a positive treatment for me.
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@jen1 I’m confused about the trial. If your MO said you would still get SOC drugs, it sounds like you’d be placed in an arm of the trial with SOC rather than the new drug. Trial drugs are free but I’m not sure if they are also free in the SOC arm. Then again, you also mentioned this is a new promising drug which makes me believe you might get the new drug. Like I said, I’m confused on exactly what you have been offered.
Ive been in 2 trials and while they can be a bit time consuming getting the necessary testing done, I enjoyed being monitored very closely. My scans were done every 8 weeks and my bloodwork was much more thorough.
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Hi rk2020, I was very confused too, because while she said i would get stand of care drugs plus possible getting new promising drug added, then she said but you might not get SOC drugs. I was so overwhelmed and confused. Maybe I did not understand. I would. My daughter was with me and she was confused also. My oncologist did mention how closely I would be monitored, but I want to make sure I would be getting the standard of care drugs. Also my proger/was 20% not 40 I am so nervous and confused
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Hello All,
New diagnosis. Im so glad you’re here. This site helped me in 2017 when I was diagnosed with stage 3 breast cancer. I met with my Oncologist this week and my pet scan showed metastasis to my bones. I have immediately begun a regimen of Kisqali and fulvestrant along with a monthly injection of xgeva. Let the journey begin.
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@simbobby, we're so sorry to hear about your new diagnosis. We hope that, once again, you find comfort and encouragement from this community. You may also benefit from our free weekly virtual meet-ups with other BCO members where you can share and ask questions in real-time. We think it's an excellent addition to the boards! You can check them out here:
Hope this helps. Let us know if there is anything else we can assist you with!
The Mods
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@jen1 No doubt you (and likely your daughter) were overwhelmed and confused. Those are common feelings when initially diagnosed MBC and I certainly understand your initial reaction to say no to the clinical trial. When I was first diagnosed, all I could think about was starting drugs ASAP. So yeah, I totally understand the nerves too. Faslodex and Verzenio is a good combo and I hope you do well but before you close the door on the trial, I’d ask your MO to explain once again how it would work. The trial must be looking for MBC treatment naive patients, so once you say no, the door is likely closed forever.
Is it a drug in addition to Faslodex and Verzenio? There is a trial out of Boston which adds a unique small molecule drug that interrupts a pathway that allows cancer cells to grow.
Is the new drug meant to replace Faslodex? Imlunestrant, an oral SERD meant to replace Faslodex shots, is in trials and already in Phase 3. There is another trial in California adding a third, already FDA approved drug call anastrozole to the F/V combo. IMO it’s a low risk trial as all 3 drugs are FDA approved.
Is Faslodex and Verzenio a separate arm and you wouldn’t know if you are in the arm with the new drug or F/V? A trial such as this, while it may be worthwhile, may be too stressful for you.
Don’t get me wrong, I’m not trying to push you into a trial. I’m just saying that you may want to learn more before you close the door completely. The best of luck to you matter what you choose.
@simbobby Welcome to the group nobody wanted to join. I hope you find this site supportive of both your educational and emotional needs.
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