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Apparently it was noticed 2 -3years earlier. It went untreated until 12/ 24. At which time I was told about the prior diagnosis . I was told they were going to re evaluate,not to be too alarm because most of the liaisons had disappeared and the thought was I was in remission. No such luck. So I start on April 15, 2026 I begin the weekly chemo belly shots, Darzalex Faspro,for the next 6 months or remission occurs.
@A MyMyelomaTeam Member
That’s why treatment scares me to no end because my neurapathy is already severe and progressing, probably bec the myeloma is taking its course, who knows. It’s up to my knees now, treatment will only make it worse. But tomorrow is going to be a better day. I pray.
Leslie,
I have IgA Kappa also, with t(14:16) with 16q deletion, Monosomy 13 and +5. Does your MM have any extra features ? Darzalex FasPro should knock it down fast. You should read @A MyMyelomaTeam Member story. His was knocked down in weeks. The longer you are on the drugs, the more permanent neuropathy can be. I take Bob’s Red Mill Nutritional Yeast every day. I’ve had neuropathy since 2014. It helps keep it in control.
Paula🌹
Larry, @A MyMyelomaTeam Member @A MyMyelomaTeam Member
Larry, Thank you for the information, much appreciated. I will be seeing Dr. Landgren on Tuesday, so, will see what he has to say about my mspike fluctuating from .3 to .4 and calcium from 9.5 to 10.2, in just 3 days, on the repeat labs. The mspike at diagnosis was .5.
@A MyMyelomaTeam Member
Be sure to take 10,000 IU of D3 daily that also includes K2 as MK-7 (100 mcg). This will pull Calcium from the blood into the Bones. Do this early in the morning and take Magnesium Glycinate late at night (400mg).
At night, Natrol Quick Dissolve (under the tongue) at -anywhere from 10mg to even 60mg, as needed will greatly help with neuropathy stinging in your hands and feet. This works very quickly.
Something to note - an iPhone, especially when 5G is active will cause significant Stinging in your hands. I wear two sets of RF shielding gloves when using my iPhone - it makes a huge difference.
During the day. I take 5mg Ritalin and a 500mg Tylenol, 3 or 4 times daily - this provides me significant relief from my neuropathy
Hope these help
@A MyMyelomaTeam Member @A MyMyelomaTeam Member
Paula and Larry, I was so caught up with my mspike fluctuation from .3 to .4, I overlooked my calcium which has always been normal, well, March 24 it was 9.5 and on the repeat labs, on March 27, 3 days later, calcium is at the height of the normal range or 10.2, what is going on, AI says 11 is a concerning number???? Hypercalcium, now ai says I should repeat lab for calcium and see if it was a fluke? Seems like these double mspikes and calcium are dancing together…maybe it’s nothing or maybe it means something is going on…my FLC ratio came down from 49 to 45, it was 51 at diagnosis. What’s going on w calcium, maybe the myeloma is affecting the calcium?
P.S. the neurapathy and my balance is noticeable more progressive, I recall my last neurologist appointment, my neurologist, who has had active myelkma fir 15 years, and eats revlimid daily and curcumin, told me, well, Dan, maybe ur neurapothy won’t progress, I knew then I was in trouble bec it is like a drip drip drip, it keeps progressing, I can feel it…but AI says probably not the myelkma causing it bec my neurapathy was diagnosed in 2006 by the same neurologist…they do nothing except want to sell me gabepentin which I refuse…good grief the neurapathy is going to get my mobility before the myelkma does…something is the root cause of the neurapathy and Landgren keeps deferring to the neurologist and he says there is no treatment except for gapepentin…as the Neurapathy goes, so to may the myeloma…if they are not related then why is the neurapathy progressing?
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