Bone Mets Thread
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Thank you Snow drop!!
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I’m so sorry, Nicole. Hugs to you
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NicoleRod - I'm so sorry, you have sure been through it with all of this. I'm not sure what the significance of the hematoma on T9 means. The wording of the report makes it sound stable. I'm glad you have experience people on your team. That makes a huge difference. I don't think a Lidocaine patch would interfere with a PET scan. Mostly things like food intake and exercise, anything that would cause undue metabolic uptake in the body should be held before a scan. I would assume a Lidocaine patch would be harmless but you could always call and make sure before hand. I think each center has their own protocol from what I've seen.
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Nicole - so sorry about this report. I hope you can talk to your doctor about it. I think it helps calm me when I can speak to the Doctor. They sometimes will have a plan already in mind to combat the new development.
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NicoleRod - crap, crap, crap. And hugs.
My last PET confused me too because it showed a lesion on T12 which was radiated last February. I thought to myself that because they don’t yet have my previous PET from a different facility to do a comparison, it’s probably the same lesion and is really “stable” not progression. Wrong I was. This new lesion is in a totally different area of T12. Not sure if the same thing is possible on the sacrum.0 -
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MKrestel,
After 10 treatments of radiation and not any relief of pain, they sent my scans to orthopedic doc at Cedars. He said I have a rather large mass on right upper thigh Femur? He talked to me today and wanted me in surgery Monday…said he would clean it out and put a pin/ rod in leg. He said to be very careful so not to break the bone.
I couldn’t tell him I’d have the surgery Monday as I really didn’t have energy to get pre tests done so fast. I think I will need the surgery. He said many 3 days in hospital. Onc has me set up for first time shots on Tuesday . I said the Ortho wants me to have surgery and will shots interfer she told me I need to ask the Ortho drA lot to think about today Wishing you the best
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NicoleRod and RK2020, I'm sorry about the confusion and concerning reports. I hope that there is better news soon.
Spent Monday in the ER due to concern of a clot. Turned out it's just a superficial one, but my MO wants me on lovenox injections, twice a day, self-administered indefinitely. It's always something, isn't it?
I think I start Verzenio next week. Hoping the side effects aren't too bad.
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To All,
Has anyone had surgery on bone to clean out and put rod or pin in . They are recommending that for my thigh as radiation hasn’t relieved the pain
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I have had it done and it has made a big difference, I have full mobility now in my right leg, just make sure to do all your rehab exercises.
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- Positive2strong I'm sorry to hear you need surgery. I hope it goes well and helps the pain. I don't miss backbone #T6... Therapy helps me a lot, just try to keep moving.. a hug and a flower for you from my garden
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Kittykat,
Did they take out some of your tumor. Why did they do the surgery, did radiation not work.
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The tumor had eaten so much of the bone it was on the verge of breaking, they removed as much of the tumor as they could and radiated it after it had healed.
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Positive, when I mentioned the possibility of needing a rod in my femur to my ortho dad, I thought he'd flip out at an unnecessary surgery. He was actually fully supportive of it. He said he did them when he was an Air Force doc a long time ago. My ortho onc was concerned about the stability of my femur, but for now it's OK.
I pictured the surgery as having to be sliced open from knee to hip, but apparently it's a relatively small incision near the hip. I'm glad Kittykat had it done successfully and could share her experience. It's always nice to hear the success stories.
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Positive2strong, I just wanted to say best wishes for your upcoming surgery. Please let us know how you're doing if you are able. Kittykat, I'm glad that surgery helped you to feel better.
I have a large tumor (12cm) in my femur that I'll be starting radiation for next week. I don't know if radiation will help when it's already so big. It's so painful that I've almost become bedridden in the last week or two. I can barely walk around the house with a cane. They tell me it's not broken...
Star, I'm sorry about the clot. I think starting on blood thinners is a good idea though, so nothing worse happens. Unfortunately MBC can make the blood very prone to clotting. :-( I got a DVT a few months ago and I've been on blood thinners ever since. It was scary.
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buttonsmachine, which bloodthinner do you take? I'm not sure how long I can last on these injections.
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Star2017-- I was on Lovenox for 3 months back in 2017 for a clot in my subclavian from my Port. Now I am on Eliquis for a PE clot in May of this year.
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Positive2Strong,
Just went through what you're going through x 2. Went in for a routine CT and they found that my R femur was almost totally consumed by a combo of arthritis and cancer. That one came out and I now have a hip replacement. On L side, they did a mini cleanup and inserted a rod. It wasn't as bad as the right. I had two separate operations, so my info probably isn't relevant to you, but I didn't think the pain was bad at all. Because of unrelated complications, I'm still messing with rehab, but if you're only doing the one side, it should go well.
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candy, I'm so impressed you managed three months on lovenox! I'm only five days in and just want to be done with these injections.
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Star, I'm also on Eliquis which is a pill. You could ask to switch I think. They discussed putting me on Lovenox but decided on Eliquis partly because I preferred not to self inject (was already having to do that with Neupogen). Best of luck.
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Thanks, buttons machine. I think they gave me a months worth of injections, but I'll call to see if they'll switch me soon. I definitely don't want to inject indefinitely. My tummy is already feeling tender.
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Positive2strong - Femur pain is what started my whole sh*t show. I thought it was a sports injury but the ER docs proved me wrong. I then got confirmation that it was mbc from an oncologist who immediately set me up with an orthopedic onc. That was March 2020. Before the surgery, I could barely walk with a cane. I had surgery on a Tuesday. They had me up and walking that afternoon. The next day they taught me how to do stairs and a better way of getting in and out of bed. I went home that Wednesday afternoon with a walker. My in home PT started on Friday. All in all, the surgery sounded scarier then it actually was. I don’t like to take pain meds, but it’s important to stay ahead of the pain. The hard part for mewas PT. I was in good shape prior to my leg pain so it was a bit deflating being so weak but as my doctor promised, I can dance again - although 16 months later, my surgical side is still weaker. Exactly 4 weeks after surgery, I had one radiation treatment (8 gray) to clean up any cancerous cells in the area.
Good luck and I hope you find pain relief0 -
Yikes! You ladies have been through so much. I'm scared silly. You are my heros.
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thanks to everyone that replied.
kittykat, rk2020,bevjen,buttonmatch, and othersI haven’t scheduled the surgery. I guess I keep thinking it will get better.
My onc has me scheduled for Tuesday to get my first shot. I am not sure what it is my onc said you get it in the buttocks. I hope this shot is only once a month. I do know I will take Ibrance. When my onc called me it was on my cell and I said I would call her back on my landline and she said how long will that take as she had to go in 5 minutes. So I could not hear everything.
I asked her how many Mets and she said I didn’t count them and the report says multiple. I asked her grade and no answer. She kept complaining report was small print and she needed better glasses.
She is affiliated with Cedars and comes highly recommended but yikes
I am trying to stay positive….it is hard.
All your communication does help.
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Positive2Strong, I'm sorry the MO seemed so off her game. How frustrating! I get fulvestrant once a month in my butt (two shots, one on each cheek). It's possible that's what you'll get. It's not as terrible as I thought it would be, but that being said, I was really shaken the first time because they administered it in the same infusion center where I rang the done-with-chemo bell three years ago. I didn't expect to be so troubled, but I was. Anyway, after that initial shot of fulvestrant, I've been fine. I hope it goes smoothly with you too.
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Positive2Strong - I got a loading dose of Fulvestrant (the butt shot) so my first two treatments were two weeks apart. Monthly after that. Good luck.
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Positive, I got the same: loading dose in each fanny cheek first (as recommended by the manufacturer to get medication levels up quickly) and then two weeks later a similar dose, followed by once every month thereafter.
There are some tricks which seemed to work to make the shots more tolerable:
Be SURE that the nurse (or you) warms the shots before administration. Your underarm is a great spot for warming most efficiently. Don't let them give it to you cold from the refrigerator.
Though this may or may not be possible depending on the facility, if you find a nurse who administers particularly well, ask for that nurse each month.
Some take Claritin two days before, day of shot, and two days later to stave off soreness. The generic is loratadine and is cheaper.
I found online that this helps, and it seemed to for me: Lean on the examining table and take the weight off of the "shot" side buttock before shot is administered by crossing the shot side ankle behind the supporting ankle as you get each shot, releasing muscle pressure on the shot side.
Truly, it's not so bad. Good luck with all of your treatments. We're pulling for you.
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One last thing, Positive: walk briskly as soon as you can when you're done and try to twitch your fanny around to get the medication moving and distributed more quickly.
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Positive - one last thing on the butt shots…I immediately but gently massage the area for a few seconds to help disburse the liquid. I never get lumps anymore.
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I also had three sets of fulvestrant shots two weeks apart and then once a month. Walking definitely helps. I'll try rubbing the spots too!
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