I'm so glad I found this community. Compelling reading, lots of hope, and so informative.
Multiple myeloma is very new to me, so I don't have much to contribute as yet, but I thought I would introduce myself and provide the basics so as to get more engaged.
My name is Dhruv, I'm 32 and live in Dubai. I was diagnosed in December 2017, and the story goes something like this:
- I had been sickly on and off through the year (getting infections, bugs, and the like)
- Mild lower back pain that would surface now and again; I always thought it might have to do with posture / sitting at work or how I sleep
- Got nosebleeds a couple of times
- I'm basically fairly fit, eat well, and so on, but had been feeling less "fit" recently; not looking forward to climbing a flight of stairs, not able to do much the few times I went to the gym, happy to couch potato most weekends.
Once they ran my blood (or tried to; the blood was so viscous that they couldn't get any readings all day), they found my creatinine to be very high and hemoglobin low (~8). I was immediately put under the care of a hematologist and a nephrologist; they suspected multiple myeloma from the beginning and confirmed it 2 days later with a bone marrow biopsy.
I was immediately put on Velcade, Revlimid, and dexamethasone (VRD). The kidney failure has been challenging, and I have never been on the full dose of Revlimid. In fact, in early January, once the creatinine started rising again, I have been on cyclophosphamide instead of the Revlimid. We restarted Revlimid about 2 weeks ago (10 mg daily since January 25) and this would be my week off.
The creatinine has been consistently dropping every week and is now at around 1.5 mg/dl.
I have IgG kappa myeloma; most recent readings had IgG at 6700 mg/dL and free kappa light chains at 1870 mg/L.
Aside from this, I have a number of masses (extramedullary plasmacytomas) in and around my intestines. A biopsy confirmed these were myeloma (three 5-6 cm diameter masses, and two smaller 1.5 cm lesions).
The FISH panel revealed three 'abnormalities': translocation on t(4,14), t(14,16) and "a deletion of MAF consistent with a loss of 16q".
I have been coping pretty well with the medications; there are side effects and a lot of them, but over time I feel my body is becoming accustomed to the treatment: less fatigue, back pain is mild, and other side effects (neuropathy, constipation etc) are quite sporadic. I'm still anemic (hemoglobin ~8 g/dL), WBC, and neutrophils are low but holding, and platelet count is low (those haven't changed in the past two months).
That's all from me for now. There's obviously a lot more going on in the background. Talk of transplants, other medications, and so on. As I said before, this is all so new. I hope to learn from everyone here and look forward to some engaging discussions as I navigate through this new and still surreal world.
