Bone Mets Thread
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I got results of MRI. They are good. All the pain I am having in my right pelvis is not from cancer. So now I think it’s all in my head. I have bone mets on left pelvis And left femur as well as spinal . Those do not bother me too much. My mo is going to speak to radiologist. I asked if it is just arthritis and doc said no? So here I am having really bad pain walking, sitting,standing and lying on my back. All on the right side. I asked if it was all in my head because once again I’m doubting myself. Darn disease makes me think I’m a hypochondriac now.
I was on Tylenol for past week prior to port. That’s not much help for any pain. Today I’m back on Advil and starting back on Tykerb tonight after a 2 week respite.
I’m not much help on all the research some of you are so kind to post but I really appreciate it.0 -
The Abraxane thread is a little slow at times so I thought i’d Ask here. How bad is it in comparison to DD Adriamycin/ Cytoxen and DD Taxol? Will I have that awful full headed feeling where you are dizzy and can’t hardly even think? Wondering just how much I’m going to be able to do physically and mdntally
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Maire have you considered seeing a physiotherapist? With all the mets on the left it could be referred pain / overcompensating muscles trying to protect your left side from stress.
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hi, I haven't posted here in a while. Had no connection so,catching up a weeks worth. I too have muscle mets, hip area along with liver and top of femur/pelvis. Latest 3 weekly infusion of trastuzumab, plus xgvega injection, herceptin. Feeling fine apart from leg pain.
Now we have 2 Minnie's. May change my name to avoid confusion lo
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So they gave me Procrit yesterday because my hemoglobin is low. Today I decide to check the side effects (I know, should have done that first but I didn't know they were going to give me this drug, they kinda sprung it on me) anyway, on the website for Procrit it says
"For people with cancer:
Your tumor may grow faster and you may die sooner if you choose to take PROCRIT®. Your healthcare provider will talk with you about these risks."
Excuse me???? I will definitly be telling them no from now on! Why would you give me this???? I'm pretty pissed right now.
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BigPeaches,
This is a known issue with the colony stimulators. Your Oncologist has got to choose between you dying of anemia or neutropenia, or causing tumor progression down the road. http://cancergrace.org/cancer-treatments/2012/04/13/hematopoiesis-and-growth-factors/
Transfusions are also fraught, as you can develop antibody sensitivities. Unless you are receiving transfusions from an identical twin, there are enough differences in the blood products to cause your body difficulty. Having this side effect is rare, but the risk of it does have to go into the decision to get a transfusion. https://www.healthline.com/health/transfusion-reaction-hemolytic
Fun, huh?
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Hi everyone. I've been lurking the last year since stage 4 dx. Thought it was time to join in. This is a great group of ladies. You've helped lots. Thank you.
Tomorrow I see MO after scans yesterday.Found it interesting that the tech told me that she was going to have the radiologist look at them quick to see if he wanted another shot but she said she didn't think he'd want to. This comment came after looking at a little computer image of the scan and nothing appeared to light up on that little image of my bones. Sure hope not. Was surprised she said that much. They are usually pretty hush hush.
Of course the techs doing the CT didn't say much except the one gal sounded concerned for me and wondered how I was doing considering my carcinoma. HUH? Did she see something to be concerned about??? UGH.
I don't experience toooooo much scanxiety but those kinds of comments keep me awake.
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Welcome Gailmary! The ladies here are wonderful!! I too, hate when the person doing the scans make various comments! I’m ALWAYS trying to read into what they say and do. I’m sure most of them are able to see things on the scans while they are being done. I try to get in and out as fast as possible. My onc knows to call me the same day that the scan is done.. it’s thw waiting for results that causes me the worst stress. It’s like your life is hanging in the balance. I was very clear to my onc about that and she has always called me right away which I appreciate. It helps to have the scan done early in the day to make sure the results are available.0
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Welcome GailMary - The technicians are usually so mum about anything unusual that they see and I like it that way. I only want to hear interpretations from the radiologists and the oncologists. There's no need for them to say anything that may cause us anxiety. We have enough of that already.
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Sorry everyone, but I’m feeling very depressed today. My cousin started having symptoms of DIC again. Blood works also showed that her fibrinogen is low. We were lucky to make her DIC stop last year by Abraxane, but as the first line of treatment fails, I really don’t know how effective the next one will be. I know a few of you also have marrow mets, but i have never heard anyone from the forum that had DIC before. Her situation is very unique, every time when a medication stops working, It results in DIC.
The case below is not breast cancer, but it’s exacly the same.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452993/#!po=61.8421
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I'm having chemo brain, what's DIC? (I know what IDC is unfortunatly)
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Thanks for your response BigPeaches. It’s Disseminated intravascular coagulation, and yes, it’s a pretty rare condition in BC so a lot of ppl have never heard of it. Symtoms include low fibrinogen, and bruises everywhere.
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gailmary-I always get a copy of my scans and the reports, the day of them or the next day. I like to be prepared when I go to see the oncologist for the results. The technicians never say anything. On one of my first bone scans, the technician asked if my breast cancer was on the right. I said yes, what did you see. He said he couldn't say anything, and I'd have to wait to talk to my dr. The receptionist in the radiology department, was the one to tell me I could get copies of my own scans. I've been doing that ever since.
kidman-sorry about your cousin.
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I have a broken metatarsal bone in my foot that is not healing. I am scheduled to get a pin in it next week. Has anyone else had this procedure? I’d like to know what to expect. Hurts a lot now and interferes with my quality of life. Hoping the pin aides the healing and I can return to some kind of regular walking routine.
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hello divinemrs. I have no idea about the surgery but just saying hope it get better. Pain sucks the life right out of us.
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Thanks, Patty. I wish I’d been able to get to the doctor sooner about this. I tried various things thinking it would heal on its own. I was surprised when it didn’t. I’m glad to know at least that it is officially a break, and that hopefully the surgical procedure of inserting a pin will take care of the problem. I’m a little kicking myself for not being more urgent at seeking help. Not sure why I was like that. Anyway, forward march! Or in my case, limp till I get the pin.
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Hi bone metsters, and welcome to the conversation, gailmary. A special hi to Patty, you're always in my prayers, girl.
Kidmanliang, sorry to hear about your cousin, they are so lucky to have someone as caring as you in their life. I don't have any specifics to offer, but hopefully you've got a trusted medical team to lean on for support.
MrsM, ouchie, hope the surgery gets you out of pain and back into your life.
My MO is head of the department, and we've had humorous talks about how I try to read the room when I'm getting scans. She said she does extensive training with her team to stay neutral and mind their words and actions, as we're watching them like hawks.
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divinemrs. So when is the surgery planned ? I don’t blame u for putting it off at first. Always hoping some easier fix. Ouch
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Hi everyone -- I have "increasing sclerosis" to my hips that I'm assuming is from Xgeva. I don't know much about it but I'm glad it isn't new tumors. I'm only one year in to this and my main tumor in my breast was 7ish cm and now it is two milimeter-sized tumors -- all the bone mets are tiny too. However I was super worried about getting the results because of increasing hip pain and a fall - I was worried things were progressing.
I will ask my oncologist more about the sclerosis, but figured some of you all may have this too and your stories would likely be more helpful.
Thanks
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Has anyone heard from Z. Just wondering how she is. I haven’t seen her on the board. Maire
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Maire, I was checking in Z in the fitness thread too but I saw that she posted to the abraxane thread this morning, I feel better seeing that. Hopefully, she's getting rest or is too busy doing cool stuff 😀
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Tell me what you know about decreasing calcium levels...is this something I should be worried about
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Hi. I don't have all my numbers in yet. But I know I have BC mets to bones, slow growing and multiple areas. I wonder if I should keep riding my horse and risk some falls?
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princess, just my own personal opinion, I wouldn't. It would be disastrous if you fell off or broke a bone right now. I know it probably gives you comfort to ride, and you will again I promise, but I would wait until the mets get better (and they will, just hang in there)
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Jen: I think increasing Calcium levels would be a sign of bone loss e.g. caused by mets. Maybe your body is using up some Ca or you are not eating enough of it? It might be a possibility to take some supplements. But keep in mind that your body can only uptake it in the relation of 2:1 with Magnesium, so you must supplement both. And your body needs Vit D to be able to use it in your bone, therefore you need to supplement this as well. My MO advised me (bone mets) to take all 3 even though my Ca level is ok, just to be on the safe side. And he is not a big supplement fan.
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Princess: What does your MO say wrt the horse riding? Do you have any fracture risk?
I asked my MO about going for skiing vacation this spring (I do not have a fracture risk). He told me that I would never get a go for skiing from any doc, even if I was a healthy person, because of the general risk. But he told me that if it was on my bucket list, he would go for it, if he was me. And it did. Of course, only easy and medium slopes and rather slow with many breaks and only a few slopes per day. I fell once rather hard at bad weather/no sight, but it did not do any harm.
The next thing on my bucket list is an olympic distance triathlon. I started training for it and hope to be able to do it in Aug 2019. I do not know if I will be able to run (currently only walking due to my weight), but I will know when I lost enough weight. Certainly, I cannot foresee what will happen wrt my cancer, but I am determined to give it a try. I do not think that I will be happy just doing gymnastics and waiting for progression. Currently, my MO is happy about me exercising, because losing weighg is good for my bones. We will see what he says when it comes to running and street bike cycling. He is ok with swimming, if my ANC is sufficiently high (because of UTIs).
To summarize it: ask your MO, if he has a veto, otherwise do what makes you happy (if you are ok to accept a residual risk that something could happen).
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I have a question. Onc had results of my bone scan today and said there's a possible compression fracture on T 11 vertebra. Anyone had this? He said we'd just watch it unless it caused me trouble and I'm okay with that. I get Xgeva monthly but I've only had four so far. I also take Cal-mag-D3 for the last four months, hardly time to help much. The rest of my scan news was good with either improvement or no change. I'll take it!
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Princess, I agree with Netta, best to ask your MO. I asked mine recently if there were any weights I shouldn’t use at the gym (arms are week from treatment) and was given the all clear as I’m not a fracture risk either.
Jen, I only know that my doc will hold my xgeva shot if calcium is high. I don’t know about low, sorry.
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Princess, it sounds like you and I are in the same predicament as far as are bone Mets. Mine are slow-growing and seem to cower down with each new treatment. Yes it doesn't they do eventually progress but not badly. I too have horses, and when I was first diagnosed with MBC my Mo told me to stop writing immediately. However, I was discussing with the RO one day that very same thing and she told me that in her best opinion that if this was something that I loved and made me happy to feel free to keep it up but to just take precautions. So I now wear a helmet, whereas I did not before. I know stupid. And have even discussed getting a an inflatable vest due to the fact that I do have Mets in some ribs. I say, and my RO says, keep doing whatever it is you're passionate about! you might want to slow it down a little bit. I immediately stop showing. I felt like I could no longer tolerate the the training schedule and the stress of competing. But I still to this day ride and I honestly feel like if that were taken away from me I don't know what I would do. I asked again a few months ago if it was still okay to continue writing and all of the doctors on my team were in favor of it, except my MO. Well he got outvoted. He will just have to get over it.
Hugs and prayers,
Claudia
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I think Jensgotthis was asking about decreasing calcium levels. I don’t know about that but maybe someone will come along and address decreasing calcium
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