Bone Mets Thread

Positive2strong

MKrestel and others,

Thanks for all the info and support.

I do get up often and walk on my crutches. Just starting Ibrance and get my butt shot on Monday I hardly fell up to surgery. So many things at once.

I think the 1 treatments of radiation wore me out also.

My pain is not going away and I hope the surgery would get rid of the pain.

My husband did something to his back and can’t walk either. He is on crutches.

I make it to the kitchen make his coffee and toast and carry it in a bag back to him in the bedroom. I can’t carry much with my crutches.

Just ordered some groceries on Amazon.

I really don’t know how you all have had the strength. So encouraging to see long timers

woodlands

I discovered my breast tumor because I woke up to pain on January 1, 2020. My onc said she had never heard of anyone with pain where their tumor is. I am denovo, and have tolerated Verzenio + Letrozole quite well since October 2020. Before that I took Ibrance + Letrozole but my white blood count got too low. I have taken my 2 vaccinations against Covid-19, and it is great to venture out of our nest in the woods. I am wearing a mask though, as recommended by the CDC.

A week ago, my tumor started aching. I have a CT scan and Bone scan set up for next week, as it was already scheduled, but I was wondering if anyone else has pain where their tumor is.

I have 6 inactive bone mets so far, and they are fading on the bone scans. I have some type of mass on my chest seen on the CT scans, but my onc and the radiologist think it might be scar tissue because I was accidentally given one infusion when I was first misdiagnosed with regular breast cancer.

I am going to ask for a biopsy of the mass just so we know what it is. I wonder if a biopsy is surgery or just the biopsy from the initial testing to determine cancer. Thanks for your comments and advice.

star2017

My initial tumor and my metastasis were both discovered because of pain.

Anonymous

Cross posting in liver thread.

I just got a call from Nicole a few minutes ago. I hope I can relay this well, in tears trying to write this and was in shock to hear where she was when she called. Nicole is in the hospital. She fractured C7 this morning when she woke up. I didn't get to speak to her long because she is on alot of pain medication right now, she said that there isn't anything they can do about the fracture. (Could they do anything?). She asked me to let you all know where she is and I know she would definitely appreciate prayers for her as she said and sounded like she's in a lot of pain.

I hate this disease, i really really do.

RK2020

Nicole - Sending lots of prayers and strength and good vibes. Hang in there honey. The docs will figure something out. They have to. They just have to. ❤️❤️

Anonymous

So sorry to hear about Nicole. Sending prayers up for her healing too ❤️

Tinkerbell107

So sorry to hear about Nicole. Hopefully she will be able to receive Kyphoplasty/vertebroplasty for pain relief. Keeping Nicole in prayer.

SF-Cakes

Sending you so much love and prayers Nicole, and that your doctors can find something that will help with this fracture. ❤❤

DivineMrsM

RRabbit, that is such hard news to hear. Thank you for letting us know. Holding Nicole in my thoughts. I pray they are able to do something for her pain.

KBL

Thinking about you, Nicole. I’m so sad to hear this.

Jsniffs

Praying and thinking of you Nicole. Lots of love and healing thoughts being sent your way.

Lee64

Sending prayers for Nicole. May she find relief soon.

emac877

Oh no, I am so sad to hear this! Thank you for letting us know and she will definitely be in my prayers.

buttonsmachine

Woodlands, I definitely had pain in my original breast tumor. I am sorry that you have found yourself here, but welcome.

Nicole, you are in my prayers. I hope that the doctors can find something to make you feel better soon.

Anonymous

Oh no - poor Nicole! It seems like once she gets one area of bad pain under control another area pops up. I wish her the best and that they can get the pain managed soon.

RosieRed

Nicole - prayers of healing to you. Thinking of you.

GoKale4320

Nicole - praying the doctors will mend the fracture soon. Hope you get some relief from the pain.

moth

Nicole, I was just scrolling your insta and admiring how strong and vibrant you looked with your friends. Hang in there, let ortho work their magic. I hope your pain is well managed. sending big hugs!

Anonymous

Small update on Nicole. The medical team has made a correction on where the fracture is in the cervical spine. It's C2 not C7. C2 is a new lesion that's been found at the base of the skull. Brain MRI has been ordered which she's waiting for to be done. I haven't gotten her to LOL in text yet, but i've managed to do it before so, its early I believe the lyrics from chumba wumba's tubthumping

"I get knocked down
But I get up again
You're never gonna keep me down"

describe her to a T. Tough lady. Determined lady. Will try to update as i know things. Cross posting this part in liver/bone threads.

star2017

Thank you for the updates on Nicole. Hoping you heal soon, Nicole. I'm so sorry for this new struggle.

BigPeaches

So glad to see you Nan812!! Prayers for Nicole, this disease just sucks.

cowgal

Praying for Nicole.

Woodlands - I had pain from my tumor. Mine was on my clavicle on the same side as I had lymphedema from my first bout with breast cancer. My lymphedema therapist and I thought it was just the lymphedema from my arm getting worse. MO sent me in for a bone biopsy and unfortunately, it was cancer.

sunnidays

I dont know if this is the correct place for this, does anyone know why CA 15-3 are not accurate for everyone I tried to research it but can't find anything, for example when I was first diagnosed 7 years ago it was 16, now with MBC to bone it is either 22 or 27 on every blood test which is in the normal range even though I have MBC, curiosity about this is driving me mad.

Sadiesservant

Hi Sunnidays,

I don't have an answer for you as to why but have often wondered if it is related to the aggressiveness of the cancer. I see you have ILC which tends to be slower growing. My cancer is also slower - I had almost 16 years between original diagnosis and progression. My CA 15-3 barely moves and is now sitting in the low 40s despite extensive bone mets, some remaining pleural effusion and more recently, liver mets.

Not sure anyone knows why it is so useless an indicator for some of us.

JoynerL

I don't have an answer, either. Early on my onc told me that my CA27-29 numbers weren't helpful or diagnostic. They are never high. I am usually between 10 and 20. However, when I had some progression and hypercalcemia in late 2018, the number jumped to 40. At last measurement a month ago, it was 20.

Anonymous

Nicole update. Small correction, fracture is at C7 like previously said, mistake was made in relaying to her about it being at C2/being new. Brain MRI came back clear (Woo hoo!!). She wanted me to report she will be getting rads to C7. She's experiencing a lot of pain at T3 as well. She's currently still in hospital on oxy for pain. Praying for our girl to be able to go home soon and the drs can work their magic to make than happen sooner than soon. We are all behind you Nicole!

*cross posting liver mets*

GoKale4320

Nicole - so glad you have a clear scan! Hopefully soon the doc will have the other issues under control so you can go home and rest comfortably.

illimae

Glad to hear Nicole is clear in the brain and hopeful radiation relieves her pain.

Chicagoan

Nicole-That's a relief about your brain scan. Hope the radiation eases your pain. You are in my prayers.

Nkb

and mine are sky high- they do seem to be predictive, although my MO is less reliant on them than she was early on for me.She said it has nothing to do with aggressiveness- some people with extensive disease have normal TMs - some with little disease have high TMs - it’s what your cancer sheds. It is whether it is helpful in your cancer. Sometimes they give a clue about your progression before the scans show it.