Bone Mets Thread
Comments
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Hi there,
I get the results from my latest CT scan tomorrow morning. Nervous and feeling a little lonely tonight. I have a good friend who is going to go with me. I feel like such a big baby, but support is good. Hope everyone is doing well.
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Laura keeping my fingers crossed that all is okay with your scans. There is always support here for you.
Love n hugs. Chrissy0 -
Thanks, Chrissy
I don't know what I would have done all these months without this forum. Only other people who are going through the same thing can really understand.
Love,
Laura
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Yes, it's nice to know that there are others paddling the same boat, sort of makes the journey a little easier.
Hang in there, not long to wait now. Try to get some sleep and the time will pass much quicker. Got my fingers and toes crossed for you.
Love n hugs. Chrissy0 -
Laura, you are NOT a big baby! This disease is a BEAST! So any support from friends/family, whatever, go for it! I have a friend that goes to all my appt. with the MO. I also get depressed alot as I live alone, etc. Hang in there.
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Well, my ct scan came back...besides three spots in my spine there is also one on my liver.
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BethCon, I am sorry to hear that. Not the news you want to hear after so much treatment in the past year. Your hormone positive status does mean there are more treatments to try. I hope the next one has much better results. :-)
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BethCon, I am so sorry to hear that. My CT scan turned out ok. In fact, my bones are even thickening. But, that doesn't mean things can't get better for you. When I first started treatment they couldn't even give me chemo because they couldn't get my white blood cells up high enough. It was just one negative thing after another. Keeping you in my thoughts and prayers.
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BethCon, I'm sorry, that's not the news I know you were hoping for but there is still hope so don't give up. There are still a load of treatments out there that will work for you. One day at a time is the way to get through even an hour at a time if necessary.........
Love n hugs. Chrissy0 -
BethCon, sorry to hear that you didn't get the news you'd hoped for. I just met a 7 year survivor who was diagnosed with bone and liver mets 7 years ago. She looks fantastic - I met her at the airport when our flight was delayed and she asked me why I had a crutch. Never would have known anything was wrong. She was headed to Auckland from Wellington for a business meeting. So there's definitely postive stories attached to real people out there. Hoping for better news for you in the future.
Terre
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I looked at my ct results myself this morning, and my doctor neglected to tell me that they found another spine spot, this one on T9, also that my L4 is now fractured. It also said something about a vein thrombosis at my one ovary? I'm not even sure what that is, but I'm so damned tired of these doctors not telling me everything. I just get to read it myself later on..
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Just got my scans back and have a new bone met at L1. I've had clean scans for the last 3 years on Femara & Zometa. They are looking to do radiation as 2 other lesions are now metabolicly active at T12 & T8.
My onc is switching me to Aromasin instead of Femara and may add another drug. I will also have radiation to the spots.
Terri
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:-(
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This thread is just full of bad news.
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I can't understand doctors but I am just glad I ALWAYS ask for a copy of my PET scan or CAT scan. Six months ago the PET/SCAN showed a new met in the femur. First really new met in seven years but I still have had several more for these years. I just had a CAT scan and the report did not even see a met in the femur. When I met with my doctor, she did not even mention this. Without reading my report carefully I would not even know. I will have to ask her in two weeks.
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Beth a thrombosis is a clot. Sorry that your scans show more not less mets. Sometime the docs gloss over things because they look at a the big picture and not the individual met where as we want to know the individual not the collective.
My doc used to do the same thing until I had a tantrum in his office and just told him to stop treating me like an idiot or a mushroom.......keeping me in the dark and feeding me bullsh**.......he was a little taken aback but since then I get all the information and I get proper answers to my questions. I think sometimes they think they Re making it easier on us by not telling all and in some cases that's true but there are also a lot of people who want all the info.
Ibc so sorry that you are also showing new mets.
Love n hugs girls. Chrissy0 -
I'm the same way, need all the info. I ALWAYS ask for and get a copy of any scan that is done. In my case, they can be upsetting to read!! But at least I know the truth!
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I've found that one scan doesn't always pick up all the cancer but they are looking for an overall picture of what the mets is doing. My bone scans don't pick up mets that the MRIs do. its so frustrating I know. We are now rotating between a bone, then a MRI. I've got MRI's scheduled next month and I feel they are the most percise for me. The one time I didn't get a copy of my scan while I was in the hospital, is the one that a met on my T7 was discovered but never told to me because I had other doctors treating me and they thought I already knew. A year later I am told about it and by then the mets had spread to more vertebrae and my hip. So I learned my lesson the hard way to always get my own copy no matter what.
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Everyone, the docs should be willing (eager!) to give you a copy of your scans. You shouldn't even have to ask. And the radiologists should be writing in plain English these days. They know patients are reading what they write.
My particular practice puts them all online 8 days after the scan (the doc is supposed to talk with you about them before you read it yourself). However, my doc always prints out a copy for me when he sees me.
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Keep in mind that scans are open to interpretation. For those of you who may be a little miffed that there was something on your report that your doctor didn't mention, by all means talk to your doctor, but in my case, sometimes there is more to the report than meets the eye. For instance, one PET scan report said I had some metabolic activity in my hip area that was suspicious for mets. That wasn't true, my Faslodex shot the week before was showing up on the PET scan. The radiologist was doing his job to point it out, since he had no way of knowing what it was. PETs and CTs are diagnostic images, but they are snapshots, and those glimpses can be interpreted in different ways.
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Just finished my last chemo infusion today. I will now be on Femera pills and a once a month Zometa Infusion. Feeling a little scared and overwhelmed with it all. I'm happy that I am in remission but worried about if and when will it come back and will I know that it is back.
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Yay Macy! After chemo Femara will feel easy and believe me, you will know if and when the beast returns and I'm sure you will be closely monitored by your onc. Try not to worry too much about what will be just enjoy the now.
Love n hugs. Chrissy0 -
Thanks so much Chrissy. I appreciate you and your knowledge on this bc beast. Can you tell me what kind of medication Femara is? I know I should have asked my mo but with all the hugs and happiness I forgot. Lol I have chemo brain!!!
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Femara is a hormone inhibitor for estrogen/progesterone women. it helps to keep those hormones at bay so not to be feeding any cancer cells. Kind of like starving them to death.
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Thanks Rangermom ! How are you doing?
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Macy Femara is in the group of drugs known as Aromatase Inhibitors and they shut down your bodies production of estrogen, not just in the ovaries but from your adrenals and your stored body fat. In doing this they do, as Rangermom said, starve the cancer so it dies. There are some SEs with it but most women who don't post here have very few. The main ones are aching bones and muscles, dry everything including the girly bits, fatigue, some hair thinning and bone loss but that one is covered by your bisphosphinate. There are others but they seem to come and go.
I've been on Femara since October 2010 and am doing well so don't discount how powerful that little pill is. Some take it at night as that seems to help a lot with the fatigue while others prefer the morning........really it just means to play with the time you take it that you get the least hassles. It not a problem that you take it early or late as long as, once you find what works best for you, you keep the time consistent.
Love n hugs. Chrissy0 -
Thanks Chrissy for the info. I really appreciate you and your vast knowledge of this beast we are fighting!!! Hugs & Kisses to You !!
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I'm doing good Macyhen. I'm on oral chemo called Xeloda now and its not too bad as far as SE's. All of us are so different in what works for us. Today i'm going to lunch with a BC friend of mine who is now in survivor mode. I try to do something fun like this once a week. I m so glad you are in remission now and you are on Femara. I took mine at night too and that seemed to help. Only issues I had was some bone aches and ibuprophen worked for that, but like I said our bodies and our cancers are all so different. As far as the worry, all you can do is try to keep beating it to the back of your mind. Mine has never gone away but i can get it to be quiet if you know what I mean. I remember a saying I heard once somewhere that "Worry is a lack of Faith." I have to remind myself of that frequently
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Glad to hear that you are doing good RangerMom. My mo told me that with obamacare coming in October we will only be allowed 3 Pet scans total in our lives. I don't like this one bit. I have already had 2 so I wonder does this mean I only have 1 more? She said that there will be a lot of changes for us, even the ones with private insurance.
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Macyhen,
I haven't looked into the new health policies but this seems a bit hard to believe, re: PET scans. Do you know where I can find confirmation of this?0
