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Breast cancer in bone marrow

Sewbeam profile image
22 Replies

Anyone here have any experience with breast cancer spreading to bone marrow? My little sister and I both have MBC but hers has recently spread to her marrow. Her blood work indicates that it is extensive. Thank you in advance for any information.

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Sewbeam profile image
Sewbeam
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22 Replies
HelenWi profile image
HelenWi

I have cancer in the bone marrow in my femur. Or I guess *at least* in my femur. My initial diagnosis two years ago did say “mbc in bone and bone marrow” and once I noticed that, I wanted to ask my onco but kept forgetting! Then I developed pain in my thigh and an MRI a couple months ago revealed a 7cm lesion in bone marrow in my left femur plus a teeny fracture there. I was initially freaked out but then calmed down a bit when I realized it took two years to double in size … but I’m still annoyed that my oncologist didn’t really point out this lesion initially. Anyway, I had radiation done on my femur but my pain hasn’t gone away so I am going back to the orthopedic oncologist to see what’s going on.

The thing is that I’ve been on targeted therapy for two years and scans showed my bone lesions to be stable. So PET scans don’t really show bone marrow lesions. Since my systemic therapy clearly didn’t stop the bone marrow lesion from growing we switched to Xeloda but don’t really know if it’s working yet because the femur lesion was treated with radiation. I guess it will take some time before we know.

I really don’t know how to deal with this insidious cancer unless you have symptoms. Does your sister have symptoms? Did your sisters onco suggest a new therapy to manage the bone marrow cancer?

Sewbeam profile image
Sewbeam in reply toHelenWi

She does have symptoms. She hurts all over and is very tired. They believe the cancer is in most of her bone marrow so radiation is probably not going to be an option. Her Onc has not decided on a new therapy yet, they are waiting for the results of her Guardant 360 biomarkers. Thank you for your response, it is much appreciated.

13plus profile image
13plus in reply toSewbeam

I’m sorry to hear she is in so much pain. That’s got to be tough. I hope a new treatment can control it for her

Gallivanter profile image
Gallivanter

Hello!

My MBC had spread to my bone marrow - in addition to lots of bones - many years ago. Like...8? I did not view this as anything horrible, just more cancer. And still - at that point - "bone only", which was comforting.

I understand that this inhibits the body's ability to produce blood cells, e.g. WBC, but I don't know how much of my low counts were due to the meds vs. the bone marrow issues.

It has largely resolved since I'm on a very effective treatment.

So I think the primary concern is about blood cell production, but it's not necessarily a "show stopper". I imagine it depends on how extensive (mine was quite extensive).

mymonkey profile image
mymonkey in reply toGallivanter

What treatment are you on?

Gallivanter profile image
Gallivanter in reply tomymonkey

Capecitabine. After Ibrance + Letrozole, Ibrance + Faslo, and Verzenio+ Faslo. Am feeling the best I have since beginning treatment for MBC almost 10 years ago.

13plus profile image
13plus in reply toGallivanter

I’m happy to hear that’s working for you. I was on Xeloda for the first half of this year. Everything was fantastic for the first few months but then it all progressed more again . I just started Enhertu

Sewbeam profile image
Sewbeam in reply toGallivanter

Thank you so much for your response. That really helps put my mind at ease.

Kerryd22 profile image
Kerryd22

No matter where the Mets are, it’s treated systematically. So what works for bone Mets needs to work for marrow too. And just as some drugs do work and some don’t, there’s sometimes a bit of experimenting involved for bone marrow Mets too.

Sewbeam profile image
Sewbeam in reply toKerryd22

Thank you for your response. I am hoping that is the case.

Hazelgreen profile image
Hazelgreen

I think effective limited treatment may depend to some extent on one's age.

I was 60 when I first developed breast cancer in a breast. I had surgery and took tamoxifen for 5 years. I was 73 when it was obvious that it had metastasized.

I'm now 79, still taking ribociclib & letrozole on weekdays. I monitor my cancer antigens to ensure that they remain in the normal range. I expect to die of old age, not cancer, but cancer will remain in my bones, skin, lungs, and lymph system until then. All the treatment does is to stop it from growing.

Best of Wishes, Cindy

Sewbeam profile image
Sewbeam in reply toHazelgreen

I hope that is the case for her. She is only 54 and has extensive tumors in bone and bone marrow. She is so tired and says pretty much everything hurts.

Hazelgreen profile image
Hazelgreen in reply toSewbeam

Aww, that is so sad! However, she is also lucky to have your support! I hope she finds the right treatment to dull her pain and give her energy. Do tell her that there are many cancer patients rooting for her.

Dragonfly2 profile image
Dragonfly2 in reply toHazelgreen

Yes, thank you for your comment...when people ask when I''; be done with my treatments I say it is "chronic"...so it's a life long journey and may our journey be long!😇

Bettybuckets profile image
Bettybuckets in reply toHazelgreen

Cindy- how nice to have such a good attitude!

JustmeMary profile image
JustmeMary

I have been anemic for some months and after a bone marrow biopsy it was discovered that my breast cancer has spread to the bone marrow. I am on Xeloda and get a shot of reticrit every 3 weeks to help boost my red blood cells. I’m hoping it helps my energy level. I have metastasis in my bones, brain, liver and now bone marrow.

Sewbeam profile image
Sewbeam in reply toJustmeMary

Thank you. Sending good vibes and hugs.

Hazelgreen profile image
Hazelgreen in reply toJustmeMary

Hmm - very tired, but I don't have pain so does that mean my cancer is/is not in the bone marrow? What is "reticrit"?

atoth17 profile image
atoth17

Hello,

Yes, I have it in my marrow but I tend to forget about it because we aren’t doing anything different treatment wise. My bloodwork is almost perfect except for a few liver markers. I am pretty sore in my hips but I figure I would be sore regardless since it’s in my bones.

I suppose this reply wasn’t super helpful other than to say that I have it too. :)

Allison

Sewbeam profile image
Sewbeam in reply toatoth17

The fact that you have it and it is not being treated differently is of great comfort. Thank you.

13plus profile image
13plus

I don’t have any helpful info, sorry, but your post is making me wonder about some wording on my last scans , that mentioned my bone marrow. I didn’t understand it and chose to ignore it (not my usual way) but now I’m wondering if it means I have it IN the marrow too. I will need to ask!

Keep us updated on what they decide for your sister. Wishing her the best with it all

Totheriver profile image
Totheriver

Wishing you and your sister all the best!

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