Bone Mets Thread
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I had a similar experiance as GoKale, they numbed the area, gave me some good pain meds and it was over in a flash, about 10 minutes and that was the first time in months I was actually NOT in pain.
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No pain would be nice. My back has hurt for so long I actually can't remember what it is like not to be in pain!
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NicoleRod- I definitely am grateful for no organ involvement. My brain is just trying to process that the cancer is back. Just found a week ago and have pretty much carried on as usual.
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GoKale4320- I have been doing some research on treatments and the ones that you mentioned are the ones my MO said that I would most likely be on. If you don't mind me asking did you have any issue with the insurance company paying for the medication? When I looked these drugs up on my insurance companies website most were not covered. I try to cross a bridge when I get to it but this is concerning for me as I realize most of these are very expensive drugs!
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carolinagirl- If you are like most of us, you will need time to let this news sink in and grieve. My bone biopsy was to my right iliac and it was easy, peasy. I was asleep and woke up with a small bandaid and a little bruised feeling. Heck I’ve had shots worse then that. I’m also HR+ and was taking tamoxifen since I completed my stage 2 treatments 3.5 years earlier. Since I failed on tamoxifen my first line of treatment was Ibrance, Fulvestrant and Zometa (similar to xgeva). I never checked with my insurance prior to my doc ordering the meds but MAYBE you can’t find these drugs on your approved list because they are specialty drugs? MyIbrance comes from a specialty pharmacy. Normally, I have to get my mail order prescriptions from ExpressScripts but I get Ibrance from Accredo. I know there are women who get financial assistance from Pfizer, the maker of Ibrance. And if you do find you need financial assistance, your cancer should also have a social worker who can help you.
https://www.pfizeroncologytogether.com/patient/financial-assistance
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Carolina girl, I had a bone biopsy at diagnosis in 2016. It was under twilight sedation and I only recall some pressure but didn’t see anything as I was laying on my stomach. I believe I just rested for a couple days but no pain or impact to normal life. One one mistake was googling the procedure, do not do that, I freaked myself out for no reason.
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Hi carolina_girl63, sorry that you are here with us. It’s definitely an adjustment, but it will become easier than it is right now.
I also had a bone biopsy of a T11 lesion. I was awake and they gave me local anesthesia. The anesthesia is administered as you lie on your back. The procedure didn’t take very long. I don’t remember having any precautions after the procedure other than to just rest.
I don’t know if I didn’t have enough anesthesia or if the needle hit a nerve, but I got a back spasm during the procedure. The muscle on the right side of my upper back contracted and was very sore. Unfortunately I still have pain, and it’s been over a year since the procedure. My MO thought that my back pain might be from the mets but after multiple CTs and MRIs, he now thinks my pain is just muscular. I don’t know if my current pain is from the procedure or something else but it is in the same place (near T11). I also had radiation to T11, so perhaps that aggravated the muscle that was already constricted from the bone biopsy.
I don’t mention this to suggest that you might have a problem with the procedure. Please know that most people sail through these biopsies without any issues at all. I only mention it so that you can talk to your medical team and be completely informed.
We are in the oligometastatic category. I only had 1 lesion and it sounds like you only have two. The prognosis is good when we only have a few mets, and some women live for a decade or more without progression to other bones or organs. That said, dealing with treatment is never easy. I hope that you find comfort as I do from others on this forum, many of whom have extensive mets and far more experience than I have.
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Carolina Girl, I had a CT-guided bone biopsy of T9 lesion in my spine. Nurses got me comfortable on my stomach with pillows, etc (a little more difficult post-mastectomy) and then I was given a little sedation. Definitely awake during the procedure, but not anxious. Felt pressure and once a bit of pain, maybe two seconds worth, at which point they gave me more IV meds. They kept me for observation an hour afterwards, I felt fine, had a friend pick me up afterwards and then we ate donuts in the car. Felt tired the next day, I think honestly more from the anxiety I'd been having about the procedure and insomnia leading up to it. Results took about 10 days, apparently takes longer with bone biopsies (literally harder tissue to sample). Hopefully yours will go smoothly!
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I also had a CT guided bone biopsy in August of last year. When they put the meds in, I told them I didn’t feel any different. The next thing I knew, they were waking me up after. I guess they gave me a little more, and it put me out. I have also had a bone marrow biopsy, and I was more sore after that. I hope you have a nice, easy procedure and get your results quickly. The waiting is the hardest.
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Carolina girl - I did not check my insurance to see if it was covered, but the cancer center handled all of that. They also reached out to me about financial help with Xgeva that I didn't even know was available.
I had radiation in early April. That helped me so much with the pain. I had to ask for radiation, and let them know that I was miserable and needed it. So one week of radiation daily and after 6 weeks, the pain subsided. I get by with a daily Alleve and a Tramadol and can do just about everything I used to do except run.
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As I recall for my L4, L5 biopsy. they put the IV line in me when I was in the prep room and when they took me into the procedure room, they had my lie on my stomach. Then the nurse said something like, "Here's your party juice" and that's all I remember until I woke up in recovery. Stayed there about an hour, I think, and then they took me out to the spot where my husband was waiting for me.
I don't remember any real pain afterwards, but I feel like there's a bit of a lump still there in the area of the biopsy - unless it's just a nice little roll of fat!
I did have a moment of concern when both the tech and the doc said that I was there for a bone marrow biopsy. I said, "No, you're going to biopsy L4 and L5". They double checked and sure enough, I was right. The other thing was I told the tech not to use my right arm for needles, etc. He even put a warning band on my right wrist, but then started to use that arm for the IV line! Really??? I "reminded" him, and he apologized and then used my left arm.
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Thank you so much for all of the responses and wonderful advice. I don't feel as nervous now about the biopsy. I'm ready to get this thing done and move on to the next step. Coming here has always been my best source of advice and reassurance.
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Carolina girl... I see you are from Lexington SC...I was almost there this weekend. My cousins moved there about 3 years ago from NY and they are having a graduation party for thier son this weekend...but we were not able to make it.
I will take some time for you to process it all...but you will. Seems like you are on the right track...
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NicoleRod- Too bad you weren't able to make it to Lexington. It is a wonderful place. Was the graduation a high school graduation? My three all graduated from Lexington High School. If you ever make it here please let me know.
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Yes it was a HS Graduation. I have been there 2 times it's very nice. My cousins also just opened a fitness center...not a big gym. Its called PX-7 . If I am ever back there I will definitely let you know
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Carolina, I have had two bone marrow biopsies. They sound dreadful. They are not. The idea is so much worse then the procedure. I agree with what others have said: You are put into a twilight sort of mode with drugs similar to those used for colonoscopies. I felt no pain, except for the emotional pain of anticipation. Try not to be afraid of the actual biopsy procedure.
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Hi ladies. It’s been a while since I posted here. I took a break trying to enjoy and stay busy. Hopefully everyone is ok and keeping faith. I just had a CT Thursday to my chest ,pelvic and abdomen. My MO orders it every 3 months. Report shows 2 lesions in my liver. Reads , new low density hepatic lesions suspicious for interval development of hepatic metastatic disease. I got this on my portal today. I’m a mess. Super scared. I’m sure my MO will contact me Monday. I know some of the ladies on this board have bone Mets along with liver Mets. I’m praying it’s wrong. Maybe just a cyst. I feel a mess, the same way I felt when I first found out I had bone Mets, it will b a year in about two weeks since my stage IV diagnosing . Anyway. Hug
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Hopfull2- I am one of those with bone and liver mets. We found mine (bone and liver) at the same time. They may want to do a liver biopsy on yours to verify it is MBC--- if it is a large enough lesion and in an area they can get to without a problem. I had a liver biopsy at diagnosis to verify the MBC in the liver and not another reason for the liver lesion. Prayers to you. Keep us informed and you can check out the Liver Met Thread too-- I am on there also.
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Hopfull2 - Hugs. ❤️
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Sending hugs Hopeful. I know what a gut punch it is to have it spread to the liver. I was bone and right pleura until December. But don’t give up. Xeloda resolved my two mets quite quickly. Hang in there..
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Hopfull2, it is always a shock when the cancer goes from the primary to other secondary places. Bone mets to liver is more common than I thought but treatment don't differ much. Most of the time the first line of treatment for the bone usually takes care of the liver mets.
I was bone only for 6 years but after that I got a similar report as you did - suspicious of liver mets (2 small lesions). Yes, that freaked me out! Got a second opinion immediately at a bigger cancer center. That doctor eased my mind saying that we don't know if it is mets and even if it is, there are plenty of options for non-chemo treatments. My biggest fear was getting on chemo. Ibrance plus faslodex had failed and I had to get on to something else. Needless to say, it was a relief and my next treatments kept me stable. I carried on with my life, my full time work, travel, etc.
It will take time to digest this new finding but hopefully it is not mets in the liver. Wish you the best in this journey.
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S3...wow 6 years bone only my gosh...I wish I could get even 4 months out of treatments...
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hI everyone,
i found out last month that the pain i'd been having for months was caused by metastasis in the pelvic bone and sacrum. i was about 3.5 years from my initial bc diagnosis (took tamoxifen and then anastrazole). the month since diagnosis has been...rough. thank you all for sharing your stories, as i've felt less alone in reading them.
i feel a little better since the initial shock has warn off, and i've started treatment -- radiation, fulvestrant. eventually i'll be adding abemciclib and zometa. i'm really nervous about the zometa side effects. do the rest of you take it? how's it been?
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Hi Star2017,, I have had about 3 rounds of Zometa. I go for another in about 2 weeks. I get absolutely zero side effects. I take Tylenol the morning of and i know lots of the ladies Take Claritin the night before and morning of. I see your on Verzenio,, I too am on that. Hope your SE are smooth.
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Hopfull2, sorry to hear about the new liver spots. I got liver involvement about 6 months after my MBC bone mets diagnosis. Similar to you I had two liver spots show up. Fortunately for me, chemo actually knocked out the liver spots completely. My bone mets are still extensive, on the other hand. This stuff is hard no matter how you look at it, but hopefully the liver spots are manageable and this can be dealt with. We're here for you! Please keep us posted!
Star, I'm on Xgeva (different but similar to Zometa), and I have zero side effects that I'm aware of. :-) Hopefully you'll do great on Zometa. Best wishes!
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thank you for your replies. I feel a bit calmer today. Tomorrow hopefully MO calls me. I see my therapist tomorrow morning. Glad I’m seeing her,, just in time.
BUTTONS,,, after you found out about your liver spots. Did you do IV chemo ?
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I did do iv chemo, but it actually wasn't because of the liver spots. I started iv chemo because the cancer on my dura was getting to be a problem. It was a last ditch effort to avoid whole brain or whole dura radiation. Fortunately for me, chemo worked on my dura, and it worked on my liver too.
You can hopefully treat the liver spots without having to do iv chemo. :-)
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Star2017, I’m on Zometa. I started out with monthly for six months and now once every three months. I have to say the first infusion was a doozy for me. I took Claritin and Tylenol, but I was in bed for three days. All my bones hurt, and it felt like I had the flu. I slept a lot when I could. I haven’t had any reactions since then. After the first time, they slowed the infusion to an hour. You can ask them to have it go slower than the norm. I’ve since been able to go back to a half hour. Having flu-like symptoms is common for the first time. I’d do it again if I had to. No regrets.
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Thank you all for sharing the zometa experiences. I suppose I am most concerned about the possible issues of the jaw bone.
What is the Claritin for?
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star - the Claritin is for bone pain. After my first infusion which was hideous, I now take Claritan the day before, day of and day after. I also have them slow the rate to 45 minutes and get an extra bag of IV fluid too. Since side effects often fade over time, I went without the IV fluids last time and felt like I had the flu for a few days. Next time, I’m getting the extra hydration again.
This video is long and he speaks fast, but if you are interested in learning about Zometa, this video is worth your time investment. https://youtu.be/8AmoeY9ohoY
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