bone marrow

[1glajon]

I was on ibrance for 3 1/2 years. Stopped working and was switched to Orserdu. I’ve been on this drug for almost 4 months. Tumor markers down and natera results trending down as well. I had a PET scan yesterday and it showed improvement to the Mets in my lung but also showed where one had increased and a few smaller ones. I had Mets only to left lung 4 in spine and with xgeva no new Mets. Does the scan yesterday mean the MBC is now in my bone marrow this seems scary to me. I’m 71 and was originally diagnosed in 2012 November. I see me oncologist on the 9th. Thanks for listening.

[Kerryd22]

If the cancer was in your bone marrow you’d need regular blood transfusions.

I only have bone mets but a scan last March showed progression in abdominal nodes. The radiologist told the oncologist to order another scan in no more than twelve weeks. She did that and the June scan showed that without any change in treatment the abdominal nodes were half the size they were in March. The December scan showed they’re still shrinking but more slowly. I haven’t had a change of treatment since July 2016 but over the years bone Mets have gradually moved throughout my skeleton. At the same time some mets are healed and the breast tumour is now invisible on the CT scans.

According to a YouTube discussion posted here progress is thirty percent more mets in existing areas or movement into soft tissue if you only have bone mets. A lot of times I’ve seen that doctors have recommended a new treatment as soon as they see progression but that’s not what my oncology team have decided on.

I hope your next oncology visit goes well and reassures you!

All the best

Kerry

[1glajon in reply to Kerryd22]

thank you so much!!!

[KMBL_ in reply to Kerryd22]

Hi, Kerry. I have had bone and bone marrow mets since 2013 and have never had my hemoglobin low enough, thankfully, to need transfusions. The lowest mine has ever gotten was in the 9s.

[Kerryd22 in reply to KMBL_]

I only have bone Mets but I have had low neutrophils but never enough to require action or stopping treatment. I was talking to a lady I saw regularly at the clinic and she told me that doctors had administered a blood transfusion the previous week as they believed her bone marrow was now involved. She was back for follow up and she anticipated another blood transfusion but it wasn’t to be. We’re on palliative treatment so they didn’t worry about doing a biopsy because a blood transfusion isn’t an ongoing treatment. That was the last time I ever saw her. QLD Health operates according to the Liverpool Care Pathway so once treatments are no longer deemed effective treatment is withdrawn unless there’s another drug that can be used successfully. If the bone marrow is involved and the systemic treatment isn’t controlling the cancer, blood counts will be significantly lower than necessary and blood transfusions are required. As that’s not your experience the systemic drug must be keeping the Mets in the marrow under some degree of control.

Drugs will have an effect on blood counts but that’s the purpose of regular blood tests. Tumour markers or limited progression in the bones is not a symptom of bone marrow mets. There’s an article online that discusses the subject and the writers concluded that everyone has bone marrow mets if they have bone mets but they also stated the first line of treatment for bone marrow mets is blood transfusion. To me, that sends out a mixed message but simply put, if you don’t need blood transfusions you don’t have anything to worry about with regard to bone marrow mets. It was posted on another site but I think the original post was deleted so I don’t have access to that link now.

[KMBL_]

I have bone marrow mets and have never needed a transfusion. I’ve been on Orserdu for 3.5 months, so I’m not far behind you. We aren’t scannning at this time because scans don’t usually work for me. I’m going more by my tumor markers and how I feel right now. My tumor markers do work for me, and they’ve come down a little.

[1glajon in reply to KMBL_]

My tumor markers have gone down as well!! Thanks for your info hopefully we will be just fine!! ❤️

[TammyCross]

What makes you think spread is to bone marrow?

[atoth17]

I have bone marrow Mets that were discovered only after having a bone marrow biopsy. I have never needed a transfusion and really, there are no change in my treatment plans. I was surprised when my Oncologist said she suspected I had Mets in the marrow, it was due to lots of low blood counts. I had the biopsy and she was right. It felt scary at the time but I can honestly say that it hasn’t affected my life whatsoever. I hope this helps a little.

Allison