Extensive Bone Marrow Infiltration

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Could someone explain extensive bone marrow infiltration to me please as I’ve asked my team for months and have literally been ignored! Ive Googled bit I’m still not sure. I’ve had scans which have shown bone marrow infiltration nearly 8 months ago. I’ve been on Palbo/Let - would this target bone marrow? Due to a mis read scan nearly 4 months ago and missed notes with no action (id put this in another post but I’ve had a phone-call tonight from my BC nurse who’s useless), my bone marrow infiltration has spread a lot to the point I’ve had 3 blood transfusions in 3 weeks and I’ve been off all treatment. I had 3 other blood transfusions 3 months in a row which no one would discuss with me and they said it was just because of the length of time I was on treatment and that it was fine- it was just a wee top up- because I look younger (39) they treat me like a child! No one has ever told me I have extensive bone marrow infiltration- I read it when I got a print out of the scans. I had an MRI scan for an ovarian cyst which also showed up extensive bone marrow infiltration and when I raised this again with my oncologist she wasn’t even aware I’d had an MRI of pelvis and she refused to answer any questions on it- she read the report for the first time in front of me and when I asked for a body MRI so said no- then when I persisted she got annoyed and said under no circumstance will she be doing an MRI. I’ve never had one since diagnosis apart from recently because my cancer spread into tissue around my spine! 
I feel like my hospital have lied, let me down and completely ignored what the patient was trying to tell them because of course they knew better! I know this isn’t good news!

Does anyone know if there is treatment for bone marrow infiltration? Or if it was caught earlier, could they have done something? I had a spinal biopsy there to see if cancer type has changed so waiting on results but I’m so scared that there are no treatments and my breast care nurse never says anything positive so after a phone-call with her today I feel that that’s it! Is there any hope? I’m pretty gutted and really down- I don’t know what to do!

Jox

  • Hi 

    I am sorry I can't answer your question, however noticed you have not had a response yet but plenty of views. Its frustrating when a post goes unanswered, but maybe not answered because people that have viewed, like me can't answer. Suggest you post your question in the secondary breastcancer group or maybe incurable group there is more traffic inthose groups.

    Good luck and I hope you get some I formation from a fellow cyber friend

    Iamllyn

  • Thanks lamllyn!

    Jo x

    Jo x