Bone Mets Thread
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Oof, thanks for the update- I was thinking of you! Stairs are the worst.
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Hi I am new here so hi to you all,, to fill in i had left breast lumpectomy in August 2022 and 5 blasts of radiation after i healed. I had grade 1 bc, estrogen positive, her2 negative, progesterone positive, no lymph node invoivement. so all was looking good for me. i have an auto immune conditon called PBC which affects the liver ducts. Been feeling exhausted and lacking stamina lately and doc did some bloods and my Alt phos level was 650, which was more than double what i usually am. i got called to liver consultant today and he is organising an urgent ultrasound and MRi and extra bloods were done today. he said i have spoken to oncology team and this is what they want to do. He ,Said dont go into full blown panic yet !!! i have now read a bit since i came home and read some bits and realised they are thinking bone mets as its my only elevated liver enzyme that has gone crazy. Does anyone have experience of these kind of results, my brain has gone into overdrive. thank you xxx
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katyblu, I appreciate your update on the femoral rod surgery! Honestly, it sounds like your recovery is moving along as it should. One thing that made me laugh was your describing surgeons as charismatic. So true! Mine was, too! Btw, do you have a handicap placard for your car to park in handicap spaces? Dh got the paperwork done for us to get one for 6 months, cost $5 and I didn’t realize what a difference it’d make.
It’s been almost five months since my surgery and I’m still walking with a cane and still have some soreness. Some days are better than others. I stopped using a shower chair just a couple weeks ago; still take arthritis strength Tylenol every 8 hours. Getting a sock on my left foot, the surgery leg, still takes effort. Last week at my follow up appt with the surgeon she recommended outpatient PT so I have an appt next week to get that started.
I also began going one day a week to the Y for chair yoga. It’s okay, I do it more to socialize; 1/2 an hour of easy movement isn’t making all that much difference. But I’ve become comfortable being home maybe too much. So I nudge myself a bit to get out.
YouTube has some terrific exercise videos for those who’ve had hip surgery, knee surgery or if you have arthritis so I do some of those even if it’s just five minutes here or there. One instructor whose videos I like is Alyssa Kuhn, doctor of physical therapy and osteoarthritis specialist, but there are many more to choose from.0 -
Hi @fly,
We're so sorry you are going through this. Quite understandably you're feeling panic. The hardest part is waiting in limbo until the doctors share more with you. We hope that someone will have an experience to share with you. It's certainly hard but we recommend trying guided meditation and other grounding techniques to try to manage the anxiety until you receive more information. Belleruth Naparstek has some wonderful ones, such as this one.
Please keep us up-to-date with any news you receive. We're holding you in our thoughts. ❤️
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fly, I cannot speak to your specific situation, but I’m so sorry you’re experiencing the anxiety that comes with the unknown when dealing with medical testing. I hope you are able to get some answers soon.
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Hello ladies
Thank you for your support during the beginning of my stage 4 diagnosis. I finally got my bone biopsy and ready to start my treatment. I don’t have a detailed treatment plan yet but I got the first shot lupron and xgeva. My onc suggestion: favor trial of faslodex +/- Ribo or clinical trial. I have appointment with her tomorrow, I don’t know what questions to ask. I’m really new and don’t nothing about cancer. I need your help 🙏
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Fighter- I PM'd you. But, it is good to read that you started Lupron and Xgeva. And Faslodex/ Ribo sounds good—- a SERD and a different CDK 4/6 from Verzenio. Switching up those pairs I mentioned in my PM. That sounds like what I would suggest.
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hello, not sure I’m on the right page, but I will give it a try. Stage 1A breast, no node involvement, lumpectomy, radiation, letrozole now for 3 years and 3 months of a five year prescription.
My Onco dr suggested infusion of zoledronic. I have been putting it off because of the nasty side effects I’ve read about. They keep saying it’s rare, but what if I’m that one.
my DEXA numbers from December 2022, The worst one was -1.3.what should I do? Is there another better solution?
thank you so much for your time.Hope all of you are doing well.
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Hi springdaisy (love your screen name), as this is a stage iv section, I wanted to provide a link to direct you to the threads for stage i bc members:
There are a number of topics there where I’m sure you can find a more suitable thread to ask your question and get the best advice and insight. My best to you!
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Hi Ladies: I have more questions. First I wanted to let you all know they are reducing my Verzenio to 100 a day. The oncology nurse said this can be just as effective. Have any of you who were on Verzenio had you dose reduced.? Also I don't know when to call doctor for pain. How do I know if something is a fracture or just doing to much. My next question for those of you who are on zometa did you have any teeth issues. I am starting in a couple of weeks.
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springdaisy,
This is a stage IV thread and will not be of much help with your situation. Use the search function to find topics you’re interested in. Then check to make sure it’s not a stage IV thread and also the date of the last post. That will help you avoid posting to old inactive threads but there are lots and lots of active threads on almost everything to do with bc.
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jen1 - I finally called my helpline for pain when I couldn't get comfortable/keep it controlled without taking a lot of OTC medications, which the pain was overcoming quite quickly. Its better that they are informed sooner rather than later so they can get you in touch with pain management help (with the better drugs) as well as to flag where you may be having issues. Even if I can manage pain with OTC drugs, I would let oncologist know at our monthly chat what was going on so they could be aware, especially if I had increasing tumor markers.
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Thank you sondraf.
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Divinemrsm, thanks for the suggestions! I really do need some sort of guided stretching because everything is so tight. And which leg is worse keeps switching on me lol! I will say that my left leg, the main surgery one, is much harder to dress. This weekend my DH and I did a bunch of house maintenance stuff. I was staining shelves, picking them up and moving them a few feet here and there. And the next day I helped plant a bunch of flowers. Man am I paying for it now. It hurts to do anything. Walking this morning was brutal! I think it took me 10 minutes from the upfront radiation parking to their suite. Things are a little better now but still not great…
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My Verzenio is 100 2X a day . Not 100. I did not make that clear in my in post ladies. Had chest port put in Thursday. Pet scan on Thursday. I will give you all update later this week. This PET scan is my second and will see how medication is working. Its still early on in my treatment. I only started treatment in January.
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Hi everyone. Hope you are doing well. Just wanted to say that I start radiation tomorrow on L4 and iliac. I have been suffering in pain since June, so hopefully this will cut the pain level back. Now that I'm ready to start, ah I'm a bit apprehensive. I have MS, so I worry if this will aggrevate that. Next, I'm struggling with Colitis, and haven't been able to secure that all important referral. Can someone tell me how many days I will need to go for treatment. I was too stressed out to recall what was said.. Any hints?? Thank you.
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Good morning! I had palliative radiation to rib mets in September and had 5 treatments on consecutive days. The treatments are very short and the nurses are wonderful about bringing warm blankets. I was told to expect improvement over the following 3 months, and that's exactly what happened. Pain reduced from a 7/8 to a 2/3. Wishing you an easy treatment and good results.
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hey irish - usually its 5 days, though on rare occasions I see ladies with 10 days for whatever reasons, although I dont think its as super targeted. Good luck with the rads!
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Hi ladies and thank you for replying. Today they did Ct-sim mapping. Now I have to wait 5 business days to hear back when I actually start. RN said 10 days since they are doing two spots. They were so kind in accomodating me to climb into that CT scanner. I just can't due to claustrophobia. RO said I could go in feet first and they fixed me right up. Thanks so much for the support.
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Irish, I really hope the radiation goes well for you! My favorite techs of all time were my radiation technicians, they were caring, compassionate, funny, commented on how much they liked my shoes, made sure I was comfortable every time, gave me lots of positive encouragement. I'm hoping you have a similar experience.
I'm just over seven weeks out from spinal surgery, and am driving again! Short distances, but what a joy to drive this morning in the sunshine with the windows down, listening to loud music, feeling the wind in my (very thin) hair... it was delightful. Getting in and out of the car is sort of hilarious, but who cares. Started physical therapy this week, and oof, my back and shoulders are so tight, but the stretches feel like they are going to help. The physical therapist was happy with my straight walking posture and how much I've been able to walk. One step at a time.
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Good evening ladies. hope everyone is doing well.
After a long period of wait I finally got a treatment plan. Diagnosed stage 4 bone only 1 year after my stage 3. Er\pr +, Her2-. ESR1, PTEN mutation. The plan is Falsodex + truqap, lupron, xgeva. I’m really new ladies, what do you think about the plan??? How is your quality of life on these combo?? Are you still doing good?? I’m so scared and nervous. Please 🙏
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fighter, Its not bad, assuming you progressed while taking an AI and CDK4,6i? You should be aware the progression was very likely due to the AI, and the cancer may well be fully sensitive to CDK4,6i, which work great on bone mets so keep it an option for a future combination. What's not great about this plan is the Faslodex, because it cannot tackle several ESR1 mutations (esp the common Y537S, but also a couple uncommon ones), so Elascestrant would be better—- but unfortunately there is no FDA combo they can offer you. So if you have a cancer center near it is well worthwhile to check with them if there is something better to be had in a trial, for example Capivasertib with Elascestrant:
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Thanks @cure-ious for your reply. MSK has three trials unfortunately I’m not eligible because I’m already got verzenio. I don’t think falsodex will be working bc the ESR1 and my onc assume it can. I’m really scared
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I’m on falosadex Zometa, and true cap the falosadex wipe me out and a lot of other ladies here too you’re gonna be down for a couple of days. The true cap has dropped my tumor markers 100 points in six weeks but I got the rash and it’s miserable, my daughter said I look like I was sunburned all over. It’s a very deep, intense, fierce itch and it’s all over even in my eyes. I’m gonna try to keep on it because it is working for me so try it and maybe it’ll work for you
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@fighter00 I’m a little confused. Do you have the PIK3CA mutation? That’s what Truqap is used for. I’m on Orserdu/Elecestrant for the ESR1 mutation. I’ve been on it a little over five months, and my tumor markers have consistently come down. There is a trial with a CDK7 and Orserdu that has come out. I can’t participate because I had already started treatment.
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@spookiesmom i got my first shot of falsodex this morning and I feel great. Let’s see others day. I’m so nervous
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@fighter00 I had no idea Truqap was for PTEN as well.
I just had a conversation with someone else who has ESR1 and started Faslodex in December. If you remind me a month or two down the road, I can let you know how they’re doing.
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Ok thank you so much
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I've been lucky with the Truqap so far, with no real SEs. Am also getting the Faslodex shots once a month and Zometa quarterly.
PET scan on Friday shows improvement. That's the first "improvement" in a long time! I'll take it.
Carol
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