Bone Mets Thread
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Katyblu- my bone mets were extensive and bone marrow also- cleared significantly with Ibrance for about 20 months, then bloomed, cleared again on Afinitor for 10 months, then bloomed, on Xeloda for 19 months and once again cleared. if the meds work they can clear up extensive mets- it may take a little while, although in my case TMs went down fairly rapidly. Good luck!
Met with my MO today re my PET and she is very happy with it, the few new tiny spots she is not concerned with, my TMs are on a downward course now also, she says the spots may be gone with the next PET and carry on with the Xeloda. I am so relieved. I am going to breathe again for a few months.
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katyblu, I'm sorry that this has become so overwhelming. Others with more experience have shared reason for hope. Best wishes on the success of this next line of treatment.
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RK and Nkb - Thank you for the pep talk, it definitely helps. I too am hoping this Ibrance kicks these lesions to the curb! I really appreciate y’all taking time to brighten my mood!
Nkb - That is wonderful about your scan! Congrats
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My next PET scan is this Friday, the first since the know Stage IV diagnosis. I'm scared and hopeful, and I know many of you can relate.
Treatment has been up and down. I did about 5 weeks of 150mg Verzenio, and switched about two weeks ago to 100mg. Tummy issues have been much better. Unfortunately the Xarelto seems to have be causing some excess bleeding, and I'm taking a break until things resolve. Next fulvestrant shot and first xgeva are next week.
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Hello everyone
I see a few ladies that are new to mets like me i feel the same as what others are saying - such a fearful time right now
I was wondering what everyone does for pain i seem to be in alot on and off
Also some blueberries tried to kill me about week ago i slipped and fell hard and now new pain added
I am on percocet right now but one doctor wants to switch to dilatin i am hoping fulvestrant helps shrink tumors or radiation in future
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Hi beth, sorry you're feeling pain. Radiation really helps many with pain so perhaps that should be part of your care plan sooner rather than later?
as for the drug, I think maybe it's dilaudid? That's for pain. Dilantin is anti-seizure...
sorry that you fell - that's the last thing we need, right? I'm being so careful now but I do dog agility with a young lab cross and sooner or later I'm going to take a big tumble. I try as much as possible to be prepared though, good footwear, avoid slippery surfaces and pay attention to what I'm doing. We have to baby our bones now.
It's really hard at the beginning but once you see how your treatment works, things get better both physically & emotionally.
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Hang in there ladies, I was re-diagnosed in 2018 with very extensive bone mets and at Monday's treatment my MO said I had very little cancer burden in my body (tell that to my lower spine). Anyway, just wanted to say that it does get better.
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Thanks moth i think you may be right about the radition sooner i will ask doctor this week. I am an artist and art helps heal me emotionally but have not been able to paint with pain it is frustrating so maybe doctor will give pain and wellbeing
Dilaudid yup thats the one so many names to remember..lol I suppose you are right about the baby bones i think friday i start ribociclib hopefully that helps too Ithink the emotionally will come will time you are right and phsically with treatment hopefully - thanks so much for your encouragement and hopeful words
Sending hugs to all that need them
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Love hearing that bigpeaches makes me smile
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Hi all,
By way of introduction: Stage III BC in 2013, mets to thoracic spine in 2014, managed with radiation and lots of different therapies (see signature). The RO said he used every bit of radiation I should have in my lifetime on my T-4,T-5 area. Yes, I had compression fractures regularly. Used opioids as needed.
Fast forward to the last 1-2 years, in which I've had progression in bone (more vertebrae, iliac, hip, ribs, shoulder blade). I went on the last chemo I plan to do (Taxotere), which ended in April. There was some progression and no retreat. The vertebral and shoulder pain became excruciating in the last couple months. They put me on a Fentanyl patch, very low dose, a month ago, with oxy for breakthrough pain. It has been only ok as a solution and my MO suggested... Osteocool.
I underwent the Osteocool ablation and kyphoplasty procedure on Sep 10. I can hardly find anything about the procedure in journals on the web, and certainly not on discussion boards. It's very new (last few years) and only a few hundred have gone through it. Pre procedure I was 7-9 pain most days. The procedure itself was torturous because I have very dense vertebrae (sclerotic) and, under twilight sedation, they hammered the needles with the radio-therapy tips into the vertebra, fried the tumor, and cemented the gap. They say, it's not normal for the procedure to be that terrible. (They tell me I was trying to climb off the table when they started hammering.)
I'm on day 5 post-procedure and I'm doing ok. The pain is today a 5-6 throughout the day (that's using an opioid midday and middle of night). 6-8 at night. First few days were 10/10 for sure. I'm assuming I'm still dealing with post-treatment pain, so I'll give it 2 solid weeks before I say if it was helpful. I'm not in a hurry to schedule the next session; however, I hate the dopey constipated feeling of fentanyl and oxy.
There were four areas they wanted to ablate, and usually limit themselves to two per session. They got 1.5 done because I was difficult
. Next time I'll be under general anesthesia.My goal: be able to go off of narcotics and just use ibuprofen again. To live without wanting to die.
I am open to questions. I would love to know if anyone's done the procedure or anything like it. I think there was some discussion 30 pages ago about kyphoplasty, cementoplasty.
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Pearl-girl, I have no experiance with this but I'm so sorry your in pain
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Pearl-girl: Please keep us posted with your outcome re the procedure. I hope you receive pain relief asap. When I had SBRT x2 years ago, this procedure with the Osteocool was in the planning phase to be approved in the IR department. When I had a consultation with IR, I recall the provider being optimistic having this intervention available in the near future.
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Pearl-girl, praying for relief and healing for you.
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Hi everyone,
I had my PET-CT yesterday. Those no-carb, no-caffeine days are rough, combined with the 6 hours of no food. I had a headache that progressively got worse. It took four sticks and the IV specialist to get the IV in, but everything went smoothly after that. I watched a couple episodes of Friends and they wheeled me in.
I haven't heard from the doc yet (scan was Friday afternoon), but the report in the portal makes it sound like there's no new mets and the existing one in the iliac bone has reduced activity. Hoping that's correct.
I was hoping for no activity after radiation and new meds, but I'm happy it sounds like things are going in the right direction. I see my doc Tuesday and get my next fulvestrant shot and first xgeva shot that day too. I don't have much pain but there's tightness and strain in the joints that could be the result of radiation or just general bone weakness.
Hope you all are having a good weekend.
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great news, star!
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Great news star! Hopefully, your new medicines will help finish off the mets. Also, keep in mind that the radiation will continue working quite a while after radiation treatments and that the cancer cells die from radiation when the cells try to divide so it isn’t immediate
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pearl-girl thanks for sharing your story about osteocool procedure. Here is positive vibes for your speedy and painless recovery. Please let us know how you are feeling.
I was a candidate for osteocool ablation at the beginning but my vertebrae broke and tumor extended to my cord, so the team decided that radiation was the right treatment. I talked to IR physician several months after radiation, he said this procedure is off the table for me because the risks of spreading is high. I have some other bone Mets in my spine, and I am more leaning towards osteocool ablation when it's time.Edited to add: https://www.medtronic.com/us-en/healthcare-professionals/products/spinal-orthopaedic/tumor-management/osteocool-ablation-system-rf.html
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Friends, j just days after saying we need to baby our bones I fell and broke my arm.🙄 honestly I'm lucky I didn't break my hip or give myself a concussion cuz I fell pretty hard. so anyway don't do as I did and please be careful and don't break your bones
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Oh, moth, I'm SO sorry! That really sucks.
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Geez, Moth, be careful! Broken bones are no fun but I hope you have a good story and get a cool cast. I broke my wrist in a couple places many years ago after roller skating while drunk, it was such a pain in the ass. I’m sorry and hope it heals quickly and completely.
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Oh Moth! I'm sorry to hear that. It's a fine line between living our lives normally and catastrophe! Wishing you a speedy recovery.
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Oh, moth... so sorry!
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Moth—. So sorry you fell and broke your arm.
OUCH.
Sending you tons of speedy recovery wishes.
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So sorry to hear this, moth. Hoping for a speedy recovery.
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Very sorry to hear about your fall and broken arm, moth. Here's hoping you recover quickly....take care.
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moth- warm wishes. Such a hassle
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Moth I'm so sorry broken bone is not fun, healing wishes <<hug>>>
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Moth, so sorry to hear this. Wish you a speedy recovery
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Ooooft Moth!
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Moth, ouch, yikes, sorry about your broken arm. Glad you didn't break anything else, but ouch! Hope you're doing okay.
Also, illimae, roller skating while drunk, lol.
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