[heathermullenParticipant]

Dear Debbies, sending hugs, what you’re going through ending up with a stoma is awful

[heathermullenParticipant]

Thank you all for responses sorry I haven’t been on forum for a while my focus is mostly how I cope as a carer for my husband and his increasing Alzheimer’s. I’ve just been told my paraprotein and free light chains ratio has gone up so am having an MMR scan next week to check no further damage to spine, already a great deal of damage so I’m hoping not, but it’s hard to tell as get pain as we mostly all do with myeloma, suffering increasing diarrea again I seem to recall I’d seen somewhere on the forum that there was a specific drug for this when the cause is ixazomib but can’t recall what it was called

[heathermullenParticipant]

Hi Amme and Pamn,  thank you for advice Amme, it was kind of you to reply whilst your recovering.  It’s pretty scary isn’t it waiting for this treatment isn’t it.  I’m still waiting for results of bone marrow biopsy week last Friday before can be absolutely sure SCT will go ahead on 11th July as if cancer isn’t low enough I will have to have more rounds if chemo before SCT.  Don’t want that to happen, want this treatment over and done with.  Still feel lots of fatigue and worried this may mean cancer not low enough, could be though haven’t yet got over chemo and treatment for stem cell harvesting,I should know middle of this week.  Is this the case for you Pam?  Hope your beginning to feel better Amme.  Heather

 

[heathermullenParticipant]

Hello Marian,

I have been supposedly smouldering since I was diagnosed 2 1/2 years ago.  My blood results have remained low throughout, para protein being always less than 10 although plasma cells have been 22, which is higher than should be for someone smouldering apparently.  I too though have had a great deal of pain and fatigue throughout this time and have been constantly told it must down to another condition and to go back to my GP, which I have repeatedly done.  The pain became unbearable 10 days ago so a scan was arranged ‘to be on the safe side’, I haven’t had one for more than a year, and more blood tests.  The blood tests came back no significant change, still low, but scan has shown I have significant bone damage caused by myeloma!  I had a phone call from the hospital telling me this today and that I need radiotherapy straightaway.  Apparently it is rare but it can happen that myeloma can be active and cause bone damage whilst blood results can be low.  I wish I had insisted on having scans more often, no assumptions can be made it seems that myeloma is going to proceed the same way for everybody!!

 

[heathermullenParticipant]

Hi Graham,

Thank you for responding.  I think it highlights that this is such an unpredictable condition and your right because it effects our plasma cells and immune system we can experience many differing symptoms.

 

Best wishes Heather

[heathermullenParticipant]

Hi Bella,

lovely to hear from you.  I think I should have started a new discussion trail rather than adding on the bottom of this one started by GeeBee but I didn’t realise that until after I posted it, of well hey ho.  At least you have responded anyway.

odd your consultant is referring to you as MGUS.  No I’m referred to as having myeloma.  Some of my other blood test results have been up and down a bit at times, the ratio between Kappa and Lamba being higher a bit as well as calcium level, though pp has never been higher than 10.  So with plasma cells being 22 I wonder if that is why I have so many symptoms.

It is though tough at times dealing with it emotionally isn’t it.  I hope I ‘smoulder’ for years and that you continue to do so.  I have appointment later this month, always a worry.  Living with symptoms though whilst being told I shouldn’t have any can be difficult

Heather

[heathermullenParticipant]

Hi all,

I haven’t been on this forum before, although I was diagnosed with myeloma over 2 years ago.  I am on watch and wait still regarding treatment, my pp being less than 10.  My plasma cells though are 22.  I am unwell a great deal, fatigue and bone pain particularly in the mornings, I do though ignore it as much as poss and get on with my life.  I’m told I shouldn’t have these symptoms at this stage by the consultants, but the reality is I do!  Does anyone else out there at my stage have these symptoms?

Heather

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