Diagnosis Christmas Eve

This topic contains 2 replies, has 3 voices, and was last updated by  williams34 1 week, 2 days ago.

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  • #150661

    zoomes
    Participant

    I was diagnosed Christmas Eve with a paraprotein of 44g/l IgG. This was following a Free Light chain (BJP) count in my urine that was killing my kidneys. I am now on DVTd treatment on cycle 2, I just have a bit of peripheral neuropathy to work through with the docs. The kidney problem is most worrying for me. I started by having what I thought was chest pains but in fact were rib pains and were misdiagnosed ( in my opinion) by the cardiologist as angina , they duly put a stent in where they thought there was some occlusion, but two things should have alerted me, a) this did not relieve the rib pain, b) the medicine (TNT derivative) that you put under your tongue did not relieve the symptoms either. DVTd has all but cured the rib pain and my paraprotein has gone down probably by half by now.

    #150716

    deeceebee123
    Participant

    My diagnosis came after a collapse at home as a result of my kidneys packing in. Total shock to me. After 20 days in hospital I was told I had multiple myeloma. Still in shock now.
    Have had 2 lots of DRd treatment (which reduced the light chains massively) but then got an infection and my white blood cell count was zilch. I’ve now been on pause for treatment for 2 weeks.

    What an illness to get your head around!?!?!?!
    Hope you get some treatment soon which is good for you.

    #150783

    williams34
    Participant

    It sounds like you’ve been through a lot since your diagnosis, especially with the initial misdiagnosis and the impact on your kidneys. Rib pain is a common symptom in paraproteinaemia and related conditions, and it’s not unusual for it to be mistaken for cardiac issues, especially when chest discomfort is involved. The presence of high paraprotein (IgG) and Bence Jones protein in the urine can indeed cause significant kidney problems, but it’s encouraging that your paraprotein levels have dropped significantly with DVTd treatment and that your rib pain has improved.

    Bortezomib-based regimens like DVTd have shown good results, not only in controlling the underlying disease but also in helping reverse paraprotein-induced kidney injury in some patients, especially when started promptly
    . Ongoing close monitoring of your kidney function and paraprotein levels with your medical team is key

    . Peripheral neuropathy is a known side effect of some of these medications, so working with your doctors to manage and minimize these symptoms is important.

    Keep communicating any new symptoms or concerns to your team, especially regarding your kidney function or nerve symptoms. Wishing you continued improvement with your treatment.

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