Bone Mets Thread
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Moma, Remember we are all different and kyphoplasty or perhaps another procedure will be selected for Dani. It just wasn't right for me. I saw 2 neurosurgeons before going with my spinal fusion, and both used MRI for their recommendations. Seeing a neuro is the right next step. I saw mine at an NCI Center. One question you can ask is, are the tumors ( how many and where) pressing on the cord and have they changed since last scan? Hug to you and also to Dani.
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Not an urgent matter, but the moderators came to me saying they thought I might get better support from some of the death and dying threads than here. Made sense to me until I looked, and there's very little traffic there.
They also said they realize I have relationships here, so I wanted to check in with you that it's ok that I'm posting about my process/progress in this thread.
I do love and cherish what we have here on this thread .. Smart, caring authentic folks willing to share their experience with this nasty grenade that was thrown into our life.
Let me know, please. Either way?
Love,
Patti
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Stay where you feel most welcomed. This thread is indeed active and full of great friendships.
Amy
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Momall - no words of wisdom from me. But as always, you and Dani are in my thoughts. I hope you get answers.
Patti - The D&D thread has been very quiet lately. It was very active while Rosevalley and Longtimesurvivor were still alive. I certainly feel you can share anything and everything on this thread. I always look forward to your posts. If you choose to go to the D&D thread, I will follow you there. Giving support is important, on this thread or anywhere else. Now about you. How are you? Dry heaving a thing of the past?
I posted on the PattyP thread but will here as well. Patty is back in the hospital since Sunday for the same reasons, vomiting, big D etc. She doesn't feel up to updating BCO but she misses everyone and sends her love. Of course, told her we are all rooting for her.
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MomATT,
The Kyphoplasty procedure, as best as I can explain it, involves inserting a needle in an "affected" vertebrae and inflating a balloon to restore the vertebrae to as close to its pre-fractured state as possible. They then insert a very quick drying cement like substance into the space created by the balloon. Once hardened, that vertebrae is usually more stable than an unaffected one.
The problem is that the surgeon needs to rely upon a "live X-Ray" to see what he is doing since he is inserting the needle into the vertebrae. In my wife's case, the live X-Ray view of her T2 was "obstructed" by her breastbone, ribs, clavicle and shoulder blades. They could not get a clear view of her T2, so they could not perform the procedure.
KD's neck is by no means "frozen". She can still move her head left to right, up and down. She just lost a bit of her range of motion. It has not slowed her down. She is back at work, driving, and bossing me and our two boys around as usual. :-)
If KD ends up with another compression fracture in her lower thoracic or lumbar spine, we would be excited at the possibility for her to have a Kyphoplsty there.
Prayers continuing for Dani, and for you.
Louis
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Patti, I check the d and d thread out from time to time. But post where you feel most comfortable. D and d is on my active favorites list, so I'll always get notified if there's a new post.
Lita
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Patti, I also keep D&D in my actives list. If my memory is correct, it seems that thread has always had a natural ebb & flow according to need over the years. This present lull was to be expected after the passing of Stephanie and now Rosevalley, but if history is any indication it will pick up again. Many of us watch the thread, and it's good that it is always there when needed. But I agree with the other sisters here-- you do what feels most comforting and peaceful to YOU. Our arms are around you no matter where you post.
I'm not entirely sure where to post these days, either. After three years, I faded out of the Xeloda thread around New Years due to progression. I eased into the Ibrance thread... then was abruptly taken off Ibrance after one week because I wound up in ER with a malignant pericardial effusion that almost took me under, and was in the hospital for a week following a pericardiocentesis that removed a jug of fluid (and now the consensus is that I've had pericardial mets since the beginning, back in 2010-- what the heck?). I'm now on weekly Taxol (on a clinical trial), but the Stage IV weekly Taxol thread is pretty quiet. SO: hmmm. And there is no thread for pericardial mets, and honestly that's a good thing-- I would rather believe nobody else here has this horrifying problem.
I feel a little bit like a bird without a nest here on the boards.
The one constant for me is bone mets-- even though bone mets are by no means my big problem right now. So I guess this thread will be my main haunt for a while.
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Lulubee and others...keep hanging out with the bone metzers! If your bones are wonky you always belong here
I have found the D&D thread to be illuminating and so appreciate the wisdom of those who have gone before. I really miss Stephanie and Rosevalley.
Had an interesting discussion with my back up onc today. He asked why I haven't had follow up scans/MRI on the breasts since my dx 14 months ago. The cts to view bones are regular but it appears we don't care about what the girls are up to. He said that sometimes folks have BMX if disease is inactive.
My main Onc said she doesn't check the girls unless there are other things lighting up. Has that been your experience with de novo MBC and bone mets
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Kathryn - no girl checking for me with my regular MO, although while on maternity the sub MO ordered a mammo and US. The only ones in 3 years. I don't know if they are necessary if we have CT or PET scans. Then again, my breast tumor was so small, it never showed up on mammo, US, PET or CT. Very small but very active to say the least. Was finally found on MRI and had a biopsy to see if pathology matched with lymph node.
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I hope you all stay on this thread because I found this first when I was dx back in November. I do have other forums but this one was such a comfort to me and still is.
Patti, as hard as it is to think of what you are going through, I don't want to not see your updates. I think of you often and feel you should post where you want to.
Casun19, that is great news!!! I'm so happy for you!!!
Lulabee, same goes with you, I really want to continue to see your updates as well. You give such great info and I pray your new treatments works for a very long time!!
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Newly diagnosed (Oct 2016) with Stage IV TNBC mets to left iliac and sacrum. Completed 25 high dose radiation treatments last week, will start Xeloda in 3 wks. I've had 2 Xgeva shots already with no SEs. Any words of wisdom or advice?
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Hi Believe51. Welcome, but sorry that you've had to join us. I'm not TNBC and don't really have any words of wisdom or advice, but I'm sure someone will come along to share. I will say this thread has been a wealth of information for me and such a comfort, too. I also have a bone met to the iliac and on T11. I had them both radiated over a year ago, and so far, they're still showing as stable. I take Zometa infusions every 3 mos. and don't have any SEs, so that's great you're tolerating Xgeva well. I trust in my care team, but question when I think something doesn't sound right or I just don't understand the reasoning, otherwise, I go with the flow and stay as positive as possible, trying to eat right, exercise and take the supplements I think will help! Hugs.
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Casun - I somehow missed your post. Congrats on great results!
Lulubee - geez sorry about your new challenges. Since 2010!? Wishing you the very best with Taxol. This thread is a nice nest for you. Keep us posted.
Believe - Welcome! Your medical team sure has a good plan.
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Patti - I would not have heard your story if you had posted on the D&D thread. I am glad you post here. I like the organ oriented threads because I get to know people all along the way.
Kathryn - I would check what is going on with the girls. Are you getting full body CT or pet scans? that would do it. I am not sure mammo is necessary.
>Z<
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Believe 51 - there is a Xeloda thread you might want to check out. Lots of useful information and certainly lots of support. Sorry you are joining us.
Amy
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Patti and Lulubee, please continue to post on this thread, if you feel comfortable here. This is not the first time I disagree with Mods actions. But I really think they over-reached in suggesting D & D thread as a better place for support. Patti, I admire your courage in living gracefully, not dying. You belong here, so are you Lulubee
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Welcome believe51. I'm doer you are here. I'm new also. I just had my 2nd xgeva shot on Monday. I don't think I have had any side effects with it. I'm on other hormonal tx so I have se from those. I am not TN but I know there are others here who will come on with some advice!
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Welcome, Believe. So sorry you have to "join the club" as it were. There is a Xeloda (capecitabine) thread, All About Xeloda, and there is lots of info on that one about side effects, schedules, etc. Very knowledgeable women on that thread. I was Dx'd with MBC right from the get-go as well. It really sucks. It probably wasn't a great way to spend the holiday months for you.
Kathryn: My BC never showed up on any mammos (mine is occult, amorphic). It only showed up on the dye-infused CT's, so maybe a mammo might not do you any favors either especially if the tumor is small. I would go with what your regular MO says...if she suggests one, in wouldn't hurt.
Lulubee: Wow!! Sorry you had to go thru that scary turmoil. Glad you're still with us.
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Lulubee - thinking of you. How are you doing? Have you had taxol infusions? How did that go? In hospital, out of hospital? Feeling okay, feeling like crud?
>Z<
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Had my third XGeva shot today. On the girls...or girl in my case! I asked my MO if I could stop having mammograms since I'm being treated for bone mets...he said "absolutely not!" So I got my mammogramabout a month ago. It was clear.
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Patti you are part of us, and to be honest of course people are always hoping, that's what's all about, but what you are going through is reality. There is a lot to learn from your situation. And we could keep each other company, most people here are stage IV so no surprises here. As your other friends told you if you feel comfortable here, I am all ears. You are definitely right that a lot of threads are not so busy, it has happened to me when I reached out for different issues, this is a very welcoming, warm place. Hello!
Lulubee the same of what I just mentioned to Patti. I and probably many others get where you are at, I'd love some sharing on other threads, but it does not always work out. You supported me so many times in the past, I wanna be there for you too. Hope Taxol is good to you.
Kathryn,No mamos for DD, she was doing it when first dx with stage IV, but then she said WTH, Onco agrees. She does have Pet/CT very often, and to be perfectly honest I don't believe that's where her problem lies. So…
KDs husband, thx for all your input. It was much helpful, and what you said Lindalou because on our visit today I was preparing my daughter that maybe they won't be able to do the kyphoplasty, I don't know after reading what you guys wrote and a bit of Dr Google, I had a feeling that maybe not.
As it turns out, this Neurosurgeon said this is his specialty but he won't do it in her case. Something about it not gonna hold. But he is not sure what could be done. He said we should see a NS for fusion surgery maybe. I am like oh no, it's bad enough to mess with the lower back, but to mess with the C area and T1/T2 it's no minor surgery. And they keep you at least overnight right? I don't know, now we are scurrying to find a decent doc. Onco is out of town for a change, but we did communicate via email, she is trying to figure out what to do. We even walked over to RO maybe thinking they could radiate that area, but she said she does not think that's the problem per se.
I think this doc was running for the hills, because she has extensive lytic lesions in that whole area, and I think he figures he won't be successful and then we will blame him. All I could say, she has severe pain and there is the numbness to deal with. Was a trying day.
Thanks again for your support and good wishes, we have no idea which direction we will go. By the time we got back was evening, so can only work on it tomorrow.
GN
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Mom - you understand so much, on many levels. so interesting to read your posts. praying that things get simpler.
>Z<
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Welcome Believe! As you can see this is our go to place for real information on living with MBC.
Mom- you know we are all pulling for you and Dani! I admire her determination to live and be there for her family. I also admire your determination to get her the best care! (())
Patti- we are here to listen and support your decisions. The counseling sounds like a good way to work through things.
Thank you Mom,Z, Lita and Linda for the input. It was really helpful! The PET in december didn't show the girls lighting up,but then neither did any mammo or ct or even one biopsy until they looked at it a second time. They only saw how widespread it was in an MRI prior to planned surgery that was called off. Sort of like a spider web all over the place.
If I thought a BMX would buy years of quality time I would consider it, but don't know that the facts support that outcome with widespread bone mets.
Next appt is Monday and I will ask. More information is a good thing
Thanks!
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Thanks, you all for your support. I really really really appreciate it and was pretty darn sure that's exactly what you would say just given how you been all along. Wasn't like the moderators were suggesting anything off, they just want to make sure I have the support I need for what I'm going through. I'm going through a lot. Still have not recovered from whatever that flu thing is I got a hospital bed yesterday to help me to be able to maneuver in the bed and and keep my head at a 45 degree angle so the acid reflux isn't active. i'm going to ask to both my regular MO and the attending Thursday and Friday to get those meds in my hands by Wednesday or Thursday next week.... the end is soon. As I said to both of them in my email to them yesterday I don't think I can take much more of this. And the death squad is all in town on February 11. By the way they call me The Hit.
I'm weak as a new born kitten, and have stopped driving. Milestones now are showering, washing hair and brushing teeth.
Oh I meant to tell you to that I'm on morphine now for SOB, and haldol for nausea both of which give really intense dreams and two nights ago my mom came to me in a dream and as she was slowly walking by she said, come with us we're waiting for you, and then just keptslowly walking. It is very soothing to see her.
I found a home for my car and for my pearl necklace.
love to you all.
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Wishing you a smooth and peaceful transition, dear Patti.
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Iwrite: My MO will never recommend a BMX on me for the following reasons...my mets are too widespread in bones and internal organs, so surgery won't buy me anymore time or QOL for that matter; and more importantly when you have surgery, you have to be off chemo so the tissue can heal. During those weeks of healing, Mr. Cancer is free to run amok and spread even more. Not a good thing.
I think most MOs feel the same way when it comes to stage 4. Lopping off a boob at this point isn't gonna do that much for us, so why bother and put us thru more misery?
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Patti, I love the fact that your Mom was with you. How comforting.
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Patti and lulu. Please stay here with us if you find. comfort here.
Patti I so hope when my time gets close my Mom is there for me. I was 19 when she passed from BC and miss her every day
Lulu I too am in Taxol and that thread is sooooo slow. Thus far the Taxol has me stable and thank god slight improvement with my liver mets
I have been reading but not posting much since hummingbirds passing- I took her quick downhill spiral very badly and needed a break but I do care about all of you!!!! Plus I've been busy planning my dd wedding. It's 4/2 so much to do!!!!! Her fiancés family is coming in from France so there's much to organize. I love focusing on this! But it is VERY tiring!!!
Hugs to all
Bab
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I think all here would agree that this thread is special and the camaraderie is unique. It is a safe place to come home to as our needs change and as we encounter medical, physical, and emotionally difficult and celebratory events in our lives. You all are remarkable.
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So well said Lindalou.
Patti - thanks for the update. You are much loved on this thread as you can see, but you knew that already! How soothing to know your Mom is looking over you. Same thing happened to my Dad in the last stages of his life.
Babs - I'm happy to hear from you and hearing stable/improvement.
Mommal - You're on top of things as usual.
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