Bone Mets Thread
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Hi everyone -- I just want to follow up in case others have this issue. I had posted earlier about not being able to start Verzenio bc of elevated liver numbers. It looks like the Lovenox injections I recently started were causing the elevation. Will switch blood thinners and hope to be able to start Verzenio soon.
Nicole, relieved to hear the brain scan was clear. I hope the radiation brings relief. Wishing you well.
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Star, will you be able to switch to a pill form of blood thinner this time? I hope so.
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Yes! I've started on Xarelto.
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That's great! Daily injections on top of everything else are tough.
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I think my RO may do both C7 and T3...and I think he may be doing SBRT?? I say this because my MO mentioned today that he said something like it will only be 1 -3 sessions for both??? But we consult with him on Friday morning just wondering if this sounds right to any of you??
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Nicole, it’s very nice to see you back. I can’t speak to spinal mets specifically but I had SBRT to my hipbone last year and it was 3 daily sessions, so that sounds accurate to me.
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Sounds accurate to me as well Nicole. I had single doses to areas giving me trouble in the thoracic spine and sacrum. Five sessions to my c-spine and base of my skull
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Hi everyone. In the past 2 weeks ive had many scans. CT, full body bone,PET and Brain mri. I have liver lesions. A bit progression on my bones. And a new one. Something about the fluid that surrounds my brain. So because if that I will be doing 10 sessions of whole brain radiation starting Monday. I’m so scared. I’m currently on Afinitor and faslodex. Once I start radiation I am to come off of Afinitor. I’m angry. Why. Why me. Why any of us. Anyway, sending all you ladies healing energies. Hugs
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Hopefull2,
I’m so sorry to hear about your progression. It is grossly unfair that you are facing this. I have not faced WBR but their is a group of ladies on the brain mets thread who I know will be able to help. It’s so scary but several have been through it and done very well.
Sending hugs
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Hopfull2 - Wow, you are going through a lot. I'm sorry to hear you have to deal with all this. Lots of hugs and prayers to you.
Nicole - That sounds right. I've had sbrt twice (once for T10 and once for T11/T12 together). Each time, I only had to have one session. It's kind of amazing. First time I didn't do any pre-meds, and I had very uncomfortable pain where they tightened the belt around me, nausea, numbness in my leg, and soreness (the last of which lasted a few weeks). Second time, I took one Zofran and one Dexamethasone as pre-meds, and I felt much better. I had minor soreness from the belt 1-2 hours later and then that was about it. I cleaned my whole garage the next day (probably steroid induced - lol). I had fatigue for about a week both times, but then it cleared. Totally worth it in my mind.
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Thank you all for the replies...so for those that had the mets in higher T spine and/or Cspine how bad was the esphogitis???? I am so scared of this.
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Nicole, I had upper c-spine and had no esophagitis. None. I was pretty worried about it as well but it never materialized. The biggest issue for me was that it knocked out my ability to taste for about six weeks. That was really discouraging for me as food is a great pleasure but it came back. I lost some hair at the nape which grew back after six months. I also found I had some weird transient low level pain to my neck and skull which was likely nerves reknitting.
The list of possible side effects was daunting, including cognitive impacts, but I experienced almost none of them.
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Hopefull, I'm sorry to hear of your progression. This stupid disease is just so unfair. I hope you get your treatment started soon & that it's effective and you sail through it easily.
hugs
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Been off for awhile on vacation (really nice....able to do a lot of walking/light hiking, put treatment issues out of my mine for awhile.
So sorry to read up and hear of Nicole's fracture and Hopefull's progression. Prayers for healing and good next steps for you both.
I'm going to post this next a couple of places because I'm preparing with somewhat increasing anxiety to talk to Onc about next treatment steps monday. ANC and WBC tanked (below .50 or heading there) on all doses of Ibrance so that seems over. If he's still considering the options he wanted me to choose from before my trip, when I preferred to give the lowest dose of Ibrance a try, they are probably letrozole with Verzenio or letrozole with fulvestrant. I've been researching and have the following concerns, which of course I'll discuss with Onc but wondering if anyone here has knowledge/experience
Letrozole/Verzenio: has advantage of continuing AI/CDK4/6 inhibitor combo which seemed to be working at least from data from TM tests. A bit worried about GI SEs with Verzenio because I already have IBS, but willing to try if this is the best potential option for a treatment that will work for awhile without the on again/off again schedule I've had with Ibrance due to neutropenia
Letrozole/Fulvestrant: I had never heard of this combo before Onc mentioned it, though noticed it's in Bestbird's list of first line treatments for mbc. Seems odd to mix two drugs that target estrogen uptake even if different ways. But there are a few studies--some using Anastrozole rather than Letrozole--that seem to show better PFS than on an AI alone. Not sure how it would compare to the AI/CDK 4/6 inhibitor combo. Also one, a 2011 study, suggested that ER+/PR- status was not favorable for a significant PFS on this treatment, and that is my current diagnosis, so.... However, perhaps there would be an advantage to doing this now and saving Verzenio which can be used as a monotherapy if hormonal therapies fail??
That's my thinking so far. Other option would be to try Ibrance again on a 5 day on/2 day off dosing schedule. But, given my lousy experience with neutropenia on Ibrance I'm not sure I want to risk another several weeks having to go off to rebuild wbc. I have extensive bone mets and want the best chance of getting cancer there under control for a time.....thoughts?
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I'd stay on Ibrance-Femara until scans show its time to move- who cares about ANC levels? It just means you still have the drug in your system, so take off a few more days off, trials show we are not immunosuppressed. Secondly, ER+PR- is not always bad news, I just finished year six on Ibrance, recently moved from Femara to Faslodex (w/extensive bone mets).
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Hmmm....Thanks Cureious, I'd like to do that. But my ANC's were consistently below .50. I guess I can argue it's still ok, since I never had febrile neutropenia. But I'm not sure how far I'll get.
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Cureious, it's always so good to see your name. Wow....6 years on Ibrance. I only made it 23 mo on I/F, but I'm at 31 mo so far on Xeloda.
Headed north on the boat from Cape May to NYC this am and then on to Lake Champlain...another boating adventure (or misadventure...stand by....)!
xox
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Hi Lynn, Wow, I had no idea anyone could go so long on Xeloda!! Who knew?! Fantastic!!!
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Hopfull2, I'm sorry to hear of your progression. I'll be thinking of you as you begin radiation. I hope it helps you to feel better.
Nicole, I also hope you make it through your upcoming treatments with no side effects.
I'm going through new progression too. This disease is just the worst. I'm hoping my next line of treatment can turn things around.
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Thank you Button...I hope the same for you as well.
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Cure-ious, my onc was expecting around 8 months. 3 month PET scan on the 10th.
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Yep, I'll bet the trial PFS was probably about 7-8 months. Does this make you eligible for some kind of analysis of extraordinary responders? We need biomarkers, so people know what they might expect out of treatment!! Did you have a switch in cancer subtype (hormone markers) at some point?
PS Indeed PFS is 7 months, but they recently reported that it goes up to 9.8 months with a combo regimen with tesetaxel and a lower dose of Xeloda. Maybe ask your MO, whenever things look like there might be some progression, if you can mix it up in this way, since you are getting such an amazing response!
https://www.targetedonc.com/view/tesetaxel-plus-ca...
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cure ious
Joyner L
So good to hear how long you are on Ibrance and stable. Did you have SE
I am just on my second week of Ibrance. I have no idea if it is working. I still have pain in right leg and on crutches. I haven't scheduled the surgery yet and Covid is high again in LA. I have a couple good days and feel hopeful but today I have burning across my back and have pain on left side front under breast by the ribs. I see so many of you posting you are going places and doing things. I am happy and hoping I get to that place. My onc tells me very little.
I was trying to build up energy to get the pre operative tests for surgery and now this new painWas it rough for you in the beginning
Positiv
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Positive, SEs from Ibrance are low ANC/neutrophil numbers, a persistent problem for which you just have to take some extra time off meds, strong fatigue in the beginning, that got a lot better after a few cycles as my body adjusted- I got a second boost of energy when I switched over from 125mg to 100 mg (at around year four), and now I don't have that issue anymore. Since I switched from an AI to Faslodex earlier this year, I've had a lot less joint pain (arthritis) and significantly less problems with indigestion (not sure if that was the AI or Ibrance or both). So, it's not nothing, but still a very good quality of life..
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Positive, I’ve been fortunate in that SE for me have been manageable on both treatments. Hoping for their best for you!
Cureious, I asked my oncologist what was the longest she had had anyone be on xeloda successfully. I didn’t specify breast cancer, but I guess I expected her to respond relative to her breast cancer patients. She is a general oncologist and excellent. She told me that she has one male patient who has been on Xeloda without progression for five years for colon cancer. He is on five hundred milligrams per day. She said that she had asked him if he wanted to try going without any drug as a result of his success, but he was unwilling to give up on the success he is enjoying. I’ll ask her when I see her next about length of time for her other breast cancer patients.
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Good to see you sailing again Joyner. Have a great trip. Heading onto a bunch of new meds. Xeloda Tukysa and Herceptin. Doing rads for brain mets. Think of you bone mets ladies who are supportive to all. 2005 diagnosis. 3 years bone mets with great response to radiations. Still moving but no dipping in the ocean this summer but loving watching grandkids. Best wishes to you all. Moving on a bit. So grateful to all of you and this site. Maire0
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Psitive2strong, it will probably take at least a couple cycles to determine whether Ibrance is working, but definitely tell your MO if you start to feel worse on it, or it seems like the cancer is causing more pain.
Ibrance/Faslodex didn't work for me and I actually progressed quickly on it. The main symptoms were increasing cancer pain, so after two cycles we repeated a PET scan which confirmed the progression. My situation may have been uncommon, but I just wanted to let you know that, just in case. Best wishes.
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Maire67! 16 years with MBC?? That’s incredible. Thanks for sharing & inspiring. ❤️
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Maire, it’s so good to see your name appear! Sending hugs to you for continued success, even though no dipping in the ocean! We’ve made it by boat from VA to Kingston NY so far, with an ultimate destination of Lake Champlain and Burlington VT. We have to race home for a PET scan (by car) on the 8th-10th and then back to the boat for the return trip. Whew…trying not to let this MBC change life too much. (initial diagnosis 1991, with MBC 2/17).
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Just to chip in on the length of time xeloda may work for, both my Onc and NP have told me they have patients who have been on it for 5 years and Onc has 1 patient who is 9 years on xeloda.
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