Saying hello

Debbiepol 1 day ago

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Hi, My name is Debbie. I’m 55 and have been receiving treatment for myeloma since September 2021. I’m on my 5th line of treatment and now on Elranatamab.
I’ve recently had a 5 week stay in hospital when first starting this new treatment as I had some serious side effects that was luckily dealt with very well during my hospital stay. I’m making progress and the treatment is working and my numbers are the lowest they’ve ever been. But I am suffering side effects such as fatigue and feeling under the weather in general. My white blood count and neutrophils are slways low. I’m struggling mentally at the moment, I think I’ve been in denial for the last three years and now reality has caught up with me. I am forever worried and scared about my future, and concerned when this treatment stops working there is nothing left for me. That what sums me up at the moment a worried warrior who wants a future and is fearful of what time I have left to spend with my family who I don’t want to leave. Apologies if I sound negative, I’m usually not and hide my fear and suffering with a smile and positivity, the saying fake it until you make it, is where I’m at. Wishing all well.

Bunky 1 day ago

Hi Debbie I'm nearly 70 and had a stem cell transplant in September 2023 and since then have been in remission but am on a maintenance drug called Lenolidomide. I had my consultant appointment on Friday and she says I am doing fantastic! All bloods and markers are where they should be, no sign of Myeloma! Even tho I'm am over the moon and do stay positive I have been chatting to my husband this morning about the fact that I do still worry about if and when it will come back. I am very fearful for this time and I look at my children, grandchildren and my impending first great grandchild in May and I'm an emotional wreck! I worry so much about the future but at the same time stay positive. My family are and have been fantastic as has the hospital but my fears are always there. Your feelings are normal and please talk about them even if it's on this forum, it's really helped me. So from one worried warrior to another, stay positive, stay well and good luck with your treatment

from Bunky.

Debbiepol 1 day ago in reply to Bunky

Thank you so much for your reply and advice. I really appreciate it. I too have a small but supportive family around me, but I don’t always show just how scared I am, I try to stay positive most of the time, but as soon as I stop or try to relax the worry creeps up on me. I’m hoping to see a counsellor in the near future which I hope will assist me with gaining some management skills. Well done with your markers, you’re doing brilliant. Stay strong and healthy my fellow warrior x

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