Bone Mets Thread
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Jaylea- I had a compression fracture with loss of vertebrae height of 41%. It progressed so fast in my spine, sacrum and hips that I couldn't walk.
I had an ablation on the 3 cm tumor on my L4 and kyphoplasty on 12/20/18 and I was walking around two days later. If you are having pain, I would get this procedure.
Melb44 I'm sorry your cancer has changed to triple negative. I've read on these sites that patients that start out HR + and morph into triple negative seem to do the best with the immunotherapies.
TMNTNGAL I don't have experience with a lumbar puncture. I hope someone will be among shortly to help. I'm sorry you are in the ER and dealing with the possibility of the cancer impacting your facial nerves. Please keep us posted
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TN, I had a spinal tap in April. I was freaked but it was really nothing, just a bit of pressure. Just watch what chair you sit in for a couple days, hard chairs that hit the puncture spot can feel sore, like a bruise. I promise it wasn’t that bad, and I’m a big baby, lol
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Thank you Novagirl & Illimae. I will post as soon as I find out something
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it sounds like we have the same thing with the facial nerve. My pain that comes and goes is extreme it's worse when I lie down. I have an MRI on the 3 January and will be anxiously waiting to see what the results are.
I am very interested to see how you go after the lumber Judy xx
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Delvzy...I am still in the ER. They’re transferring me to a larger medical center where they have an in-house neuro department. They have no beds available as of yet, so here I sit. I will update as soon as I know something.
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sending hugs
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TNMTNGAL, I know you're probably exhausted but please let us know how you are when you can.
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TN, We’re in your pocket as you wait and no doubt worry some. In house neuro is probably the best. Medical stuff is complicated, brain stuff more so, do you have someone to take notes?
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Thank you to each of you! I truly appreciate it. I am still in the ER. Blahhhhhhhhh. I’m so ready to get transferred so I can at least get my own private bathroom and a shower. Maybe it won’t be long since drs have made rounds this morning and discharged some patients. The way they’ve moved our hospital departments here has really done a job on our healthcare system here! It’s horrible. I will keep y’all posted. As soon as I know anything and when I get transferred
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TN I am sending you all of the positive and healing thoughts that I can!
RO suggested a back brace to keep things properly aligned- I'm hoping this will help with sleep!
Had my third Zometa infusion today- can anyone tell me how many of these infusions I should expect? I have a lot is SE from them so just curious.
Hope you all had a lovely holiday
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Has anyone tried those Salonpas pain patches for your back?? I'm taking my daughter to Atlanta this weekend and I really don't want to be in pain the whole time
I just wonder if they work at all......0 -
Hi sherry35! I have the Zometa infusions every 4 weeks. The first Zometa treatment made me feel like I had a 24 hour flu. Achy bones, fever. No issues or side effects with additional ones for th past 4 months.
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bigpeaches, I tried salonpas last week for a pinched nerve. I didn’t feel anything and it didn’t seem to help me at all, maybe they were old (found in a closet, not bought recently). Good luck
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BigPeaches - salonpas lidocaine 4% has been hit or miss with me. It recently has worked, but I think my pain has been more muscular then tumor related. It did not work on my tumor related pain.
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Thanks for your reply bbpie! This was my third infusion and I also have them every 4 weeks. I get three days of SE! The day of the infusion I am sooooo tired and get a bad headache, day 2 I get bad nausea and day three I get the body aches. This is so much fun!
Cheers all
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BigPeaches, I had good luck with Salonpas with Lidocaine for muscular pain. Haven't tried it for nerve or tumor-related issues. Hope your trip is comfortable and pain free.
Sherry, my MO said if my bone mets completely stabilized I could get Zometa every three months. But that wasn't meant to be, although they are mostly stable there's just enough low level activity that I'm on a monthly schedule. I do take a Claritin tablet the day before, the day of, and the day after treatment, at the suggestion of many here, and it seems to help, as it's now a non-issue, other than constipation.
TN and Delvzy, sending prayers of healing up for you and your doctors to find resolution and relief.
I've been feeling punk lately but put on my big girl pants (and false eyelashes) and spent the day with my nephews. It reminded me why we all fight this disease so damn hard. Sending everyone hugs this holiday season.
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Does anyone use the Claritin approach with Xygeva?
Jaylea- I love that you put on your false eyelashes when you were feeling punk! I felt punk on Wednesday (tooooo much holiday partying! And I had a good cry!) and got my toenails done in a rainbow 🌈 ! Headed to Jamaica on Sunday!!!!!
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Yes lovefromphilly, I take generic Claritin (lordadine, I think) a day before and a couple days after my shot. So far, I’ve had no issues at all.
Have a great time in Jamaica (so jealous)
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Philly....I get an Xgeva injection every four weeks. I've never had any side effects.
Hope
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Love from Philly,
I've never had a single side effect from Xgeva, so I've never used Claritin. I remember Z cautioning people about using Claritin on a regular basis because she learned that it was making her a difficult "stick" for blood draws, IVs, etc. I personally think it is better for people to wait and see if they have side effects before jumping into the Claritin. Have fun on vacation!
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Well...I got transferred late last night and slept until 10 this morning. Neuro came through this am and even though at the advice of neuro at Vanderbilt to have a lumbar puncture, neuro says it’s “such an invasive” procedure, they don’t want to do it. I’m getting aggravated with them already!
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Tnmtngal, You must be so frustrated! Has the neuro doc told you what he DOES plan to do? If he has no plan, he needs to tell you why you are there. I am praying that things get straightened out soon. Thank you for keeping us updated.
Hugs and prayers from, Lynne
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Hi Ladies,
Has anyone experiencing limping without any pain? My wife is in the middle of radiation therapy and the pain on her left groin and hip is gone since the therapy begins.
However, she is limping badly. she told me there is no pain and does not understand why she is limping. Given the time of the year (holiday season) and no pain is associated, our agency nursing line is like wait/see approach..
It would be great if someone with the same experience can chime in on this. You ladies are warriors! Thanks.
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TNMTNGAL...Well, what a predicament. So, what is the next step? How frustrating for you!
Hope
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yes! Very frustrating! I’m now waiting on a second neuro to come by. If they don’t want to do what Vanderbilt suggested, im going to ask to be transferred to Vanderbilt!
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I am in excruciating pain from my jaw now and complete numbness from my lower lip to my jaw bone, so sick of it sll
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Delvzy...I’m so sorry you’re in so much pain. Have you tried BCD oil? I find that it has worked some for me.
I’m now laying here waiting on them to come get me to do the lumbar puncture this morning. Everything is a waiting game. And I’m not such a patient person. Lol
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I am on 3 different oils with various amounts of CBD to THC. I am so depressed and can't stop crying
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Delvzy and TNMTNGAL,
My heart goes out to you both. My tiny little church prayed for both of you this morning, that God will find the way to relieve your suffering and give you strength to get through this.
Gumdoctor
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Delvzy...I am so sorry you are in so much pain. Prayers and hugs to you.
TNMTNGAL,,,Have they done the lumbar puncture or decided against it?
Hope
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