MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Bone Marrow question

Home Demo forums Patient Message Board Bone Marrow question

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #67422
    Ray Lawler
    Participant

    Very new to all this.Less than 3 weeks ago very tired and just not right. I have needed naps for couple of years when I could take them. Made appointment with general MD I have used for a while as I knew something was is just not right.
    I took blood test. Doc Said go to ER and get Blood transfusion. Hemoglobin low 7.2 . Took 2 units of blood and an overnight and 8.5 so home I went.
    BEST I had felt in years, maybe ever.
    So next was f/u with Hematologist.I had met her in Hospital. We set up Biopsy for Bone Marrow draw. That done and the next week in for more blood tests. They took a lot.I went home and was at low point very weak..So back to ER and 2 more units and overnight again. All this with my hip hurting like Heck….It still is raw today 2 weeks later.
    So next yesterday 5th June to a Major Cancer center and new Hematologist and care plan pending.
    Today 19 Viles of blood taken and another transfusion of 1 bag.
    Home and feel fine now with 9.1 count. I am only 40years old bty.. no family history. Looks LIKE B-12 injections for a while.
    So after all this my question is if the Bone Marrow Biopsy is the main marker they look at and I’ve had one, Why would I need another as was brought up by new MD? HAVE SOME OF YOU HAD MORE THAN ONE?

    #67423
    Amy Clark
    Participant

    So sorry you are going through this. The same happens to most people when they go to a new place. Yes, it absolutely stinks to have a new bone marrow biopsy done when you just had one. However, the new Major Cancer Center likes to have their own people with specific training draw and read your bone marrow in case the other place had different techniques that ended up with less reliable readings. The new place likely has more pathologists, etc., familiar with the type of cancer they are looking to rule out. Have you had a firm diagnosis yet or are they just suspecting MDS or another blood cancer? Know that you can ask for sedation the next time they need a bone marrow biopsy or extra numbing medicine if you are awake. My husband also asked them to go slow on the injections for numbing and to wait for it to take effect, like 5 extra minutes. Both the extra lidocaine and the waiting helped a ton until his marrow became too tired and now he will only do a bone marrow aspiration or biopsy under sedation. Just fyi. Call if you need to talk 832-540-4214. My husband was young at dx.at 52. He is now 58. God bless you!

    #67426
    Janet
    Participant

    Ray: yes, I have had 4 BMB. The 1st 3 were in a period of 6-8 wks. The 4th was this year when MDS became more aggressive. Initially my blood work was not horrible, so the elevated Myeloblasts didn’t fit the blood work. BMB showed a “normal” range of blasts, as did BMB 4. The Oncologists/Hematologist try to consider all factors.

    When will you follow-up with Dr’s and hear your diagnosis and treatment plan?

    #67429
    Mar
    Participant

    Hello Ray, I’ve had 2 BMT. 2 years apart. 1st one, easy peasy. 2nd, ugh, hip and leg hurt for weeks. I about jumped off table when it was being done. If you are diagnosed with MDS, may I suggest you get a specialist? You are very young. I would say most of us are old, ha! Keep your spirits up, hard to do at times.

    #67432
    Ray Lawler
    Participant

    thank u for your reply.I shall never forget that hip stick.

    #67433
    Ray Lawler
    Participant

    Thank you for your prompt response. We are currently ramping up B-12 for the next three weeks, after which a visit will follow. Thank you once again.
    This is all a lot to take in and this group is real.Better than the google rabbit hole

    #67434
    Ray Lawler
    Participant

    Amy, thank you so much. Your reply was the first thing I read today and it was very comforting. I’m trying to stay positive and I feel better as my counts improve. I am now prepared for the call to go in for another sedated test. Thank you for your kind words and all the best to your husband. I will keep your number, thank you.

Viewing 7 posts - 1 through 7 (of 7 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert