Bone Mets Thread
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a couple of pictures from Paris. This one is the Luxembourg Gardens.
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Animalcrackers you kidding?? It's a wonder all of you don't walk around with expletives.You are so so right. Unfair is too kind of a word. i am just working on the now, the future is out of reach. As Wendy said it's all the details, it literally takes over your life, and those close to you. There is no "normal" anymore, e/t is dependent on the next scan, next BT. Youo are for sure entitled for foul moods. For me the nights are the worst. Dani is not a happy trooper right now, She hates it that we are thinking about her. Take good care of yourself.
Chelle oh the balls, that's the best. You bet. How is DH coming along?
Wendy i hear ya, i hear ya. the extreme incompetence stuns me so much, i can't figure out how more ppl don't just disappear every day. i do still believe that is has to do with a culture of indifference, distance. It's happening to someone else.
NKB these are quite some pictures.0 -
I definitely pray everyday for everyone affected by cancer and for a cure . Please God we need a cure. Amen
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Momatt- No longer any time to think of anything except following the doctors advice precisely, they are clearly jumping to do the very best they can for Dani, and with little time left for any option. We all wish and hope she has a great response- internal radiation, wow! I have no advice better than what Lynne and Wendy have already stated so eloquently. Best of luck and godspeed.
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momallthetime, my heart is broken for you and your daughter. You are doing a great job. Sending warm thoughts
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Momallthetime, you and Dani are in my thoughts and prayers. Sending love and hugs to you both.
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Mom, how I wish we could all take you out for a class of wine and a long cry. You are an incredible human being and you are doing beautiful things in the lives of your daughter and your grandchildren. We see you. We honor you.
This stuff is so hard.
My beloved grandmother appeared to me in something like a vision or a dream a couple of years after she died, which was 30 years ago. She said she had been given the chance to come back briefly to meet my first child, who was an infant at the time. I was astonished-- gobsmacked, I'm telling you-- by how utterly vibrant and gorgeous she looked, and I told her so. "Well," she giggled, "I am in a special part of heaven for people who had a hard time on earth."
If there is such a place in heaven, that's where we are all headed, I am sure of it.
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lulubee that is so beautiful. I truly believe this to be and I know my father is in that special place Thank you for that story .God Bless
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after all of this time, I've had a progressionin my bones. Meds changed to Ibrance and Faslodex. I feel fine physically, but am sad about movement in the wrong direction.
I'm looking for some success stories from my bc sister with bone mets!!!
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iwillwinthisbattle, all I can say is to focus on how you feel, I had a bone met and recently brain mets but I feel just fine and am not letting it stop me from living well and enjoying life.
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Mom, I've been trig to find the right words. I'm so angry and scared and determined right along wth you and everyone here. I'm so hopeful this liver treatment will turn things around.
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I agree with illimae- hence Paris. I spent too much time after the diagnosis making myself sick with worry after the chemo and radiation.
Mom- thinking of you and Dani- the pictures we’re sent for a moment of joy in the midst of your incredible struggle.
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Nkb - I love the pictures. So does Mom. No one knows about staying focused on living than Dani. Keep them coming.
Any other good news out there? I would love to hear it.
>Z<
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Nkb. You were probably near my DD apt when you took that picture of the Eiffel Tower. Her DH came in yesterday. On 11/1 she will be moving to Paris and giving up her ny apt which is only 2 blocks from me. I'm happy for her but sad for me. Tomorrow we're going for her layette. I must say I really didn't know if I'd be around for this. But I'm here and I intend to enjoy every minute!!!! We all MUST enjoy the good times!
Momall. I speak to you and know how fierce you are. You are truly the momma bear caring for her cub! Thank g- d Dani has you to navigate this crazy road she's on!
Babs
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Mom....there are just no words. You and Dani have gone through hell. Prayers going up.
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Mom and Dani All I can say it what an amazing source of strength and peace you are for Dani. Sending prayers. Hold on for the children.
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just catching up on this thread after some time away, so sorry to read of those with progression and Mom so so sorry to read what Dani is going through, sending hugs and positive thoughts her way and to you too.
Nkb love the pics, Paris is one of my fave cities, enjoy your time there - would recommend some time wandering the gardens at Versailles, very beautiful!
Wendy, is it the Dragon boat regatta in Florence? Wow, amazing you are doing that! I was in Florence a few days last week on a little tour of Italy, it'll be fantastic to do a regatta there. I should think of joining too!!
Love to everyone, hope you are enjoying the weekend
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Got my exercise on the walk to Sacré-Coeur Basilica. 2nd picture is mosaic above the alter. Christ exposing his sacred heart.
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Ladies, I need the benefit of your experience. I'm on vacation in the Maldives and I'm having pain. Over the last couple of days I have developed a nasty muscular-type pain at the side of my thigh right at the top, with associated nerve pain all the way down my leg. It's getting worse and I'm hobbling around. Now I'm sure I've had unaccustomed movements and odd low chairs, but my mind immediately goes to a new met. It's been 3 months since my last CT scan. Has anyone experienced this sort of pain from a met? Thanks
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Milaandra. I'm experiencing rt heel numbness back of rt upper thigh and rt buttock numbness due to a met on my spine. Such a weird feeling!!! Plus my rt lower back hurts. Seeing RO this week to decide if radiation is next.
Bab
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Milaandra - certainly a CT would be a good idea to rule out the met. i've done that while traveling in Peru. Mentally it is very hard not knowing what is going on. You may be able to schedule radiation immediately upon return if something turns up, rather than waiting for the scan, the scan results, etc. It's important to get this taken care of whatever it is.
I was surprised to find that trip insurance covered my scan. Not sure what your schedule is but CT/bone scans are not rocket science and they are available everywhere now.
Z
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milaandra, take you temperature. I've had two viruses in the six months since diagnosis. They both started out as muscle and bone pain. And the pain was in odd spots, like down my leg. It could be something completely different but the thermometer is worth the try.
Iwillwinthis Although I am off on a bumpy start. My oncologist who does not sugar coat things said bone is very very treatable.
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Iwillwinthis, you have a good array of treatments out there, you could do this.
Millaandra scans will tell you a lot. As Babs said maybe something in the spine could provoke this
Babs thanks so much for being my ear, you certainly heard a mouthfull. Take pictures of you shopping this cute little clothing, such precious time.
To all of you wonderful precious ladies, you give me the strength. Lulubee that was so sweet. I know I'd tear the heart of those close to me or my DD, they know of something, but they don't fathom what she's going through. They could not lead their lives in a "normal"fashion if they would know, so it's really hard, my hubby is taking it very hard, and the girls keep wanting to protect me! SO it's a real carnival here. She is in pain and quite uncomfortable now, but RO has to wait for the liver procedure first, because that has a ton of radiation and cannot be done in conjuction, so now Dani is upset that this part is being held back, and it's on the verge of being dangerous for the vision and the spine compression. BUT... Monday is the 1st stage of the procedure. I'll keep you guys posted.
Tomorrow i plan to put alllll the papers in order,all her reports, i had them in order, but running to all these docs and being in the Hospital with her in between made my house look like a paper mill, i bought folders and pendaflexes and try to organize it. I do have every CD and report and blood test, I must tell you all that has been very helpful. Curi-ous yes ma'am.
To each one of you thank you so much for your kind words, the girls know when I say my friends told me this or that, they KNOW i mean you. I really don't want to write the names, I don't want to miss someone and i mean each one of you. You are a great bunch.
Bless you!
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Momallthetime, you're truly amazing. Thank you for updating us, we know how busy you are keeping on top of everything for Dani. I pray for her everyday. She's so lucky to have you as her Mom. Blessings to you all!
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ChelleG thanks so much for your encouraging information. I see that you started hormonal treatment just over two years before I was diagnosed and started on treatment. I had my DMX because the tumour in my right breast was 10cm (practically the entire breast) and there was no choice but I would have done that anyway. I'm at the stage in life where I'm well past menopause and, really, my breasts although still quite nice weren't what they used to be. My surgery was almost a year ago and I'm at the stage of acceptance but I can perfectly understand why you wouldn't want surgery if you're NED. How fantastic that you're NED just with Tamoxifen. I can't even find the words to express how pleased I am for you and how encouraging this is for me. Thanks you so much for sharing that. Wishing you well.
I have a CT scan coming up tomorrow. My tumour marker hops around a bit. It's gone down from 900 at the beginning of treatment to around 500 now but we're checking to make sure that it's last little upward hop doesn't mean progression. My MO doesn't think it does so I'm not too worried. I have a philosophical attitude to scans and don't get claustrophobic. I do have trouble with my veins so I always hope for someone good with the needle as my veins tend to slip and slide away from the needle, or collapse, as the mood takes them but I just present my arm and leave it to the needle person to deal with the situation! I do find that keeping my arm warm and gently stroking it once I've bared it for the needle while they're fiddling around with preparations helps to keep the veins primed up if that's of any use to anyone.
Have a good week everyone, hugs to all
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Momall, I just can’t begin to imagine the anxiety and fear you are going through. I would be a wreck all the time. You are one strong woman, and I’m sure that’s why Dani is being so strong through this too. I keep you both in my prayers all the time. I will be saying prayers and hoping that this treatment makes it possible for some healing to take place. Sending you both much love and many cyber hugs!!
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Hi everyone. I was just diagnosed with bone mets and have been reading and writing a lot around here lately. I was wondering how often but most importantly how fast do bone mets usually spread to spine fluid, bone marrow and vital organs in general. I'm still not on treatment and I wonder if while I wait the cancer may be spreading elsewhere. They did chest and abdomen scans to discard other mets but they didn't check my brain. I had a gammagraphy with only one suspicious lesion that was discarded as nothing. 6 months later I have multiple lesions in my bones. If it spread in six months like that I can only wonder what is happening inside my body at the moment especially since symptoms were present long before diagnosis. I will get a Pet scan but they will start treatment without it since it's not being done in my country at the moment and the u.s visa takes time. I'm scared they will find progression before treatment has even been given a chance time-wise. Thanks in advance for your answers. I have peripherical paresthesia (still not on treatment) which worries me too. My onc discribed the symptom as para-neoplasic, not sure if that may mean it's somewhere else messing with my brain, spine or nerves.
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ceci,
It's really a crap shoot as to when mets will spread. Everyone is different. Sadly, i had progression to the brain BIG TIME after only a mere 14 months (I was dx st 4 right from the gate last year).
My RO with Kaiser wishes they'd automatically test st 4 women for brain mets as soon as we're dx'd, but that's not Kaiser’s protocol. Mine were probably there months earlier. Oh well.
Bone mets are easier to treat, organ mets a little harder, and it just depends when it comes to brain mets. I have more than 20, and 2 of them are over 4 cm, so they really can't do cyber or gamma knife. Had whole brain rads, and don't know how much more time that will buy me considering I also have leptomeningeal involvement, which complicates things.
Keep us posted,
L
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Sorry to hear about Lita57, I hope you do as well as possible. Thanks for your thoughtful answer.
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