). There are so many things I can say about my journey & I may write about a few but the main thing isNever give up, never surrender!
Briefly (I'll try
) - 3 spinal fractures & a paraprotein (pp) of 67 g/L, older style treatment for 5 months (VAD - that was vincristine, adriamycin, and 40 mg dex), thalidomide 9 months - peripheral neuropathy. At that stage pp was 21. Went off for 3 weeks & pp back up to 24. Had auto, it reduced pp to 20. As a result of the auto ended up with neutrophilic enterocolitis (lungs collapsed, renal failure, heart had a hissy fit & apparently it looked like I had 3rd degree burns down my GI tract). Took me physically 6 months to recover (and I did recover) and within 2 months the myeloma was growing again & within 6 months my pp was up to 30 g/L.Tried Velcade (and dex) pp went down to 16. Peripheral neuropathy was up to my knees & it was affecting my fingers. Did not qualify for another round of Velcade as my pp hadn't been reduced by 50%.
Was told there was no more treatment available. I didn't qualify for any trials as I had experienced renal failure. Was told to go and enjoy life. We told our children then 8 and 12 - thinking about it still brings tears to my eyes.
Two amazing women on the other side of the world (Washington) registered as stem cell donors. They were a perfect 10/10 match with me. In April 2011 myeloma specialists decided to give me a modified mini allo (I couldn't have another auto as side effects were pretty horrific). I had minimal chemo & low intensity total body irradiation. It worked very well (of course I had graft vs host disease) and I'm now in complete remission.
So looking at statistics 10% to achieve remission for VAD users. 10% chance of achieving remission after a failed auto.
10% chance of achieving remission with an allo after a failed auto. Mortality rate for neutrophilic enterocolitis (at the time) was 40%. Statistics - schmastitics. My advice if you want to look at statistics only look at the positive stats (& they are there).
For the second year running there is no sign of the myeloma in my bone marrow. My blood work is normal & is getting better each year. Even the tests that measure my kidney & liver function are within normal range.
Humans are amazingly resilient - it is absolutely incredible from what we can recover. Never ever give up hope!
Smile, sing, hug your loved ones, watch out for infections (nasty pieces of work) and I reiterate:
Never give up, never surrender!
Good luck fellow multiple myeloma warriors and multiple myeloma carers.
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