We are 196,325 members in 81 forums discussing 144,696 topics.

Help with Abbreviations

All TopicsForum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis → Topic: Bone Marrow Mets?

Topic: Bone Marrow Mets?

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jul 12, 2017 09:29PM

FMK wrote:

Apologies in advance if this is a bit long!

My mother was diagnosed with bone and bone marrow mets last November. At the time she was very sick, with low platelet and haemoglobin counts and having been in and out of hospital multiple times and being sent home because 'there was nothing wrong with her'. Finally we decided to go private and the minute the specialist looked at her charts he organised an emergency bone marrow biopsy.

We went back through the Public Health Service as her specialist advised. We found out her original BC from 2004 had metastasized in her bone and bone marrow. Her docot wasn't very positive, gave her 12 months and wasn't very interested in giving her treatment. To be honest it felt like he was writing her off from the beginning. We pushed for treatment and she has been on xeloda since February. She has come on so much her platelet count had risen to 107 and it was hard to believe that the prognosis we had been given was right. We had a checkup recently and the doctor was astounded by her progress. He said he'd made a mistake and was happy to say so! We were all on a high!

But then last week she was back at the oral clinic to get the go ahead to go on course 6 of her treatment and we found out her platelets had dropped to 78 (not dangerously low but low enough for them to delay her treatment for a week) we went back today and they had dropped again to 56.

Her doctor was very upfront about how little information he had about her condition, he said she's the first person to be treated for it in the hospital. He explained that her platelets were initially so low because the cancer cells in her bone marrow were 'pushing out' the platelets. So when her platelets were going up we saw this as a good sign. Now that they're decreasing again we're all a bit worried. We don't see her professor till next week so we don't know the next step but for now they've delayed her treatment again.

I just wanted to know has anyone had someone with this diagnosis? I'd be so grateful if you could tell me how it has all went? Really struggling with the lack of information!

Thanks in advance,

Fiona

Log in to post a reply