Awaiting tests and so scared.

Hi JJC     when you get the diagnosis,  its a big  shock,      particularly if you are not even aware of Multiple Myeloma,      my wife and i before the  first visit for diagnosis,    post X ray,  MRI and   bone marrow biopsy,  we were also scared,  but came out of the first meeting with the haematologist  feeling more positive,   the treatments now are incredible for  MM,     i do not wish to  pre empt things,   but you may go onto  a  4 month cycle of treatments,    abbreviated to DVTD,   a combo of   Chemo drugs and   immunotherapy,   to lead towards a stem cell transplant,  but let the health care professionals   inform you,   i am  2.5 years post SCT  and leading a good life,  male  69  and doing good,   i am sure you will be able to see the  kids grow up,  as i wish to see my grandkids grow up.     the formum   as some great people who will give you  comments,  you are NOT alone,   we are  a great group  and we can support you,   Macmillan and Myeloma are a great source of facts,  on living a good life with MM   be  strong    the journey is worth it,    please come back and tell us how it goes for you,    Kevin  AKA  Vespa   

Thank you Kevin, when I get my results I’ll come back on and update.  I’ve never felt this scared in my life.  I appreciate your reply and hope you continue to thrive! Xx

Hi JJC, 

I think you are at the worst point. Not knowing is torture. You don’t know if you have MGUS or myeloma. The brain doesn’t like uncertainty and fills the gaps in knowledge with all sorts of nonsense. This can keep you awake at night and interfere with concentration. 
I was diagnosed 14 years ago and remember well the terror of diagnosis. I was told the median survival was 5 years, yet here I am, in a ‘good remission’ and not on any treatment. My greatest joy has been the arrival of my five beautiful grandchildren. Something I didn’t think was part of my life plan. 
I truly hope it’s good news for you , it could be MGUS . Let us know how you get on 

Thank you, I so appreciate this.  You are so correct, I’m thinking worst case.  I think from my numbers I’m likely smoldering or active.  But apparently nothing can be confirmed until I’ve had mri and bone marrow.  

Each day is torture at the moment.

im so glad to hear you are in remission and enjoying your family, that’s so hopeful for me.

xx

How on earth did people cope with the wait and impending news?  I’m driving myself mad with fear.  Xx

Hi, I had a routine test back in 2020 and they detected raised PP and also free light chains in a low proportion. I was then monitored for 5 years and had MRI and BM tests yearly which showed no damage however early this year and as preventative I started chemo for 6 months. I am not transplant eligible. And now although the PP is low but still there I am on maintenance treatment. Have to say it is not too bad. What I think it was good advice from the consultant was not to wait for bone damage to start treatment. It’s a shock. I agree over all at your young age. I am 76. The diagnosis wI’ll allow you to take decisions with your consultant and there are many routes fwd. all the best. 

Hi,

im in a very similar situation 49 thought a lot of what I was feeling was menopause and the waiting is killing me, have had blood tests, mri & bone biopsy, and have met a Heamatology Dr today but they are telling me it will be another 2 to 4 weeks before they know for certain which type of myeloma I have. Happy to be here and hold your hand while we wait

Oh my… you poor thing, arriving for that appt and still not really getting full picture.  It hadn’t occurred to me that I still might not know after my follow up appt.  I saw a haematologist, who told me very little except that I need to be tested for myeloma (I knew this from the urgent referral).  I’ve had the bone marrow biopsy and mri, so now awaiting the follow up appt to discuss. 

I don’t know about you, but I feel so shocked to be going through this at our age…  I’ve been flitting between total fear, to very low, with brief moments of clear thinking.  It’s so exhausting!!

Do stay in touch on here, happy to chat and talk through any worries.  I won’t tell you all mine as the list is huge at the moment. Xx

With you on the worry list, my only saving grace is my brother in law has myeloma he’s 10years from diagnosis and is doing well, I’m not worried about treatment (yet) just want to get on with it.

Whaaaat?  That’s such an insane coincidence.  Although I’m sure he can offer such reassurance, which is invaluable.

i had never even heard of myeloma until a few weeks ago!

I really hope you can get the answers you need asap.

As for me, I’ll continue to drive myself mad with fear, outdated google searches and panic. Xx