Bone Mets Thread
Comments
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Lita....I'm like Z. If only you knew how many times in the day I think of you. I feel as though you're a mentor and guide. My approach has always been the same as yours but I'm nowhere near as challenged as you are so it's easy for me to say that. I pray for you (I'm not religious so it's more like a chat with God) and I send you love at least 100 times a day. I love your pragmatic attitude towards being ready and when my time comes I will do the same thing. You must know how loved you are by all of us and how we all look up to you.
This is all I want to write in this post. I will post again later. This is for Lita only.
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I can’t stand that we lost another BC sister. Each time I hear ofanother loss it breaks my heart. May she Rest In Peace!
Babs
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Oh Sherry. I am so sorry. My heart is broken to hear JFV has passed. Thank you for letting us know.
It's been a rough rough winter/spring. Stay in it ladies because I count on you.
>Z<
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Babs,
Wonderful news. Hope you continue on this path.
Blessings,
Laurie
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Sherry, thanks for letting us know about Joan. She hadn't been dx'd at stage IV that long. Celebrating her spirit today.
Welcome newcomers, and Babs, keep that good news coming.
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Sad news about Joan. I hate this stupid sneaky disease. Thanks Sherry for the update
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hi Sisters. Haven't been on this thread for a while. I did a stint on the Liver mets thread, but it was a small met that was knocked out quickly and hasn't come back. I was in the Ibrance thread until that didnt work, then the Xeloda thread, until that didnt work, and I am on the Afinitor Faslodex thread,, but there are very few of us on there. Had a lung scare that turned out not to be mets. So, since I am back to bone only, I think I'll hang here a while with you lovelies. Some of you remember me but I dont use that anymore. (Privacy issue). But I do know most of you. Hoping not to go anywhere, except hopefully the NEADthread someday. A girl can dream.
Sunset
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Sunset - Once a liver metster, always a liver metster at least as far as the liver met thread community is concerned. Healthwise, you are much much better off here. I am glad you are back to primarily bone mets.
Congratulatoins
>Z<
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Hey Stef... errrr Sunset! Good to see you again! We've been on some of those threads together over the years. I figured out a while back that if I frequent primarily the threads based on my current treatment, I will lose my main support circle every time a TX fails. Which is a double bummer! But no matter where else the beast pops up, I will always have bone mets, so this thread remains my home base. My most pressing issue these days is actually pericardial metastases, which is so rare that I may well be the only person on BCO with that problem. That would make for a very lonely thread! There's always lots of good company here with the skeleton crew, though—LOL.
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Hello bone mets sisters. Just an FYI for you all. They are running clinical trials here in Western Australia on people with bone mets and how resistance training impacts on tumours. Some amazing information is coming from this and also whether high impact exercise just before and/or just after chemo reduces side effects. If you have bone mets they work the areas of the body that dont to build up muscle mass then our muscles release (things) cant remember what sorry that can reduce tumour growth. Some of the numbers I have seen have been hugely promising.
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Hello ladies, just checking in. Had a rough weekend, the actual biopsy wasn't so bad, didn't feel a thing, but the days after have been rough. Awaiting results of the PET and biopsy now, the waiting is the hardest part as we all know. Pain is a little better today thankfully and I am actually at work, which is nice. I hadn't been out of the house in 3 days!
Question: I guess its the radiation causing this heartburn and indijestion? It is awful!! What is a good over the counter for this? As soon as I eat anything in the last two days, my chest is on fire!
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my recent PET shows that my L2 tumor is now 4.4 x 3.1 cm. Isn’t that HUGE for a lumbar met??
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My Goodness Swess!! I am not really qualified to say but yes, that seems enormous. Have you had any rads to it? I'm sorry it's not going in the right direction and hope it's not causing you a lot of pain.
Sending positive thoughts your way.
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Swess, that translates to about the size of a pecan in the shell. I would ask first thing if it's a typo which is supposed to read mm, and ask to see the image.
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BigPeaches-try ranitidine(Zantac) or omeprazole("purple pill")-generics are fine.
Best, MJH
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hello Bigpeaches, I use a product called BIO Gest made by Thorne when my digestive system is negatively affected by cancer drugs and rads. It contains a combination of digestive enzymes and it's very effective. I hope it works for you too
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It’s definitely cm. I’ve seen it grow in each scan. I see MO tomorrow so I’ll ask. And fingers crossed treatment should start right after appointment.
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Fingers crossed for you Swess. Let us know how it goes tomorrow Big Peaches I hope the heartburn is helped by one those meds. If not I hope you call RO, maybe they can suggest something to help.
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Swess, I have a large met on L2 also. Although not quite as large as yours. My MO just recommended I go see a radiologist who specialize in gamma knife and cyber knife technique, to get his opinion, which in my experience will be to zap dang thing. It’s certainly worth getting another opinion. My appt isn’t for a few weeks . I’ll let you know what happens
Sunset
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Tenille76....I live in Western Australia too. What a coincidence and a surprise that I haven't crossed paths with you yet. Where is the trial being held? I only want to know out of interest at this stage because I'm on a trial at Fiona Stanley for Ibrance/Palbociclib and Letrozole and one trial is quite enough for me to handle at this stage!
I'm so sad to know we've lost another of our friends. Z....as you say, we have to all give it everything we have and stick together to fight this nasty interloper.
Thinking of you Swess xxxxx
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I got zantec yesterday, it has helped some. During the night last night I woke up crying and in pain from my knees and I have no idea why. Up until now, my knees haven't been a problem. Had to wake my poor husband to get me a pain pill and put a pillow under my knees, it's still hurting today but not as bad. I'm so tired of being in pain
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Tenile - can you provide a reference on combining chemo and infusions. I am deep into that at the moment. References for he other research would be of interest as well. Good stuff
Big Peaches - Just hugs and empathy from me. Ech.
Swess - yes. Rads. Rads. Rads.
>Z<
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Hi Everyone, I'm joining you.
I had mets just in my liver since Nov 2016. I've been on Arimidex, then Arimidex and Ibrance, and then Xeloda since last September. However, a few weeks ago I started to feel something in my leg. My MO was watching, and was going see on the next imminent CT scan if anything had shown up. It wasnt a song feeling, but then Pow I I twisted my leg and I had a very severe pain in my leg/hip. Urgent care dx'ed was a previous bone spur that had grown, and I was booked in to see an othro doc. My MO ordered a MRI, and last Tuesday I saw the Orth Doc who said that the MRI had shown it was actually a bone met that had weakened my femur and I had a crack at the top. I was very unstable, and in danger of fully breaking my leg if I fell. So the next day I had a Titanium rod inserted in my leg. Apart from the shock of all this happening I feel so much better. So much less vulnerable and recovering from the op.
I'm seeming my MO and RO later this week and having a Pet scan. So just for these few days I'm trying not to look too far forward and get worried. Just concentrating on recovery.
Looking forward to being part of this thread - tho not not the reason I am here!
Sarah x
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Sarah, Welcome to the Bone Mets Thread. I am so sorry that your "initiation" was so painful. I hope you continue to recover quickly. The people on this thread are full of wisdom that they are eager to share. I always consider the Bone Mets Thread my home base because it is where I found so many new friends and so much support when I was first diagnosed with MBC. I know that every time I start to feel down, I can come here and feel the warm embrace of the caring people here. I am sure you already know many of us from other threads. I look forward to reading about your progress and next steps in your treatment plan.
Hugs and prayers from, Lynne
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BigPeaches, sometimes I just get these weird pains out of no where. In the shoulder, in the knee, in my right hip, etc. Don't know why I get 'em as I usually don't recall "doing something stupid" to bring them on. And then they just magically go away....of course while they hurt it's not fun.
Certain chemos can bring on odd pains a day or two after the infusion. I've found this to be true with all three lines of Tx I've had. I keep a bottle of analgesics on my nightstand at all times as well as anti-nausea meds for when I wake up in the middle of the night with "discomfort." (Don't you just LOVE that word?
L
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Welcome Scwilly!!
>Z<
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Hi Scwilly, Sorry you are are joining us but there are wonderful people here to share info and support.
Glad you are recovering from surgery. Take care. Maire
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Hi sarah, bone mets usually aren't too bad. Of course, breaking a bone suck, so hopefully they'll be monitoring you better for it in the future. When I was on xeloda it cleared up my liver, but I had progression in my bones. So I was switched to Afinitor , Faslodex and Xgeva. So far seems to be working well. It's all a cat and mouse game. I hope you heal quickly and they find the new right treatment for you.
Sunset
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I had a follow up bone scan yesterday and have a lot of scanxiety. Get results next Wed. A week is sooooooo long!
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Welcome Scwilly!
Great group of metsters here, good advice, and wonderful support. So sorry to hear about your break and the addition of bone mets.
Many have found the bone strengtheners, like Xgeva, to be a godsend. I have multiple bone mets everywhere and had some pain during initial treatment, but no breakage or bone incidents so far (30 months.)
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