Update:
I've had two 21-day induction cycles of Revlimid, Velcade, and dexamethasone (RVd), with Revlimid 2 weeks on / 1 week off vs 28-day cycle. Asked my local hematologist why, and am suspecting an inaccurate assumption. Am meeting with my specialist next week and will clarify and/or change if necessary.
In any case, my light chain from after the 1st cycle looks excellent.
Lambda free light chain (range 5.7 to 26.3) - 14.8 from 381.2
Kappa free light chain (range 3.3-19.4) - 20.1 from 15.8
Kappa / lambda ratio (range .26-1.65) 1.36 from 0.04
Different labs:
Jan.14, 2016 - IgA (range 69-309) 386
Feb. 18, 2016 - IgA (range 81-463) 280
I have bone pain in my limbs still. Not severe, but noticeable. Since my issue is lesions with pretty good bloodwork, the question is what will we track now that light chain is already normal? My local oncologist suggested MRI, but I'll be asking specialist next week.
Haven't started Zometa infusions yet because of some needed dental work. Hopefully will be able to start that in a couple of months.
Am tolerating chemo really well, but like most, dislike the dexamethasone. Am a diet-controlled diabetic, and it sent my glucose soaring. Went down to 20 mg but still was devastating. So I asked an endocrinologist for insulin, am back to 40 mg, and working on normalizing my numbers as much as I can. Find the dex effect lasts strongly for 2 days, then I'm able to control blood glucose without insulin.
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Re: Plasmacytoma, possible multiple myeloma diagnosis
Hi Moonscape,
Sounds like things are starting to turn around for you! Great News!
You mentioned the dosing cycle on your RVd. With Janet, they did the same thing when we finally worked our way up to the three drug combo. i.e., the Revlimid went from a 21 day on / 7 off to a 14 day on / 7 off once we started the Velcade. I think they do this just to reduce that side effects.
You're right about the dex and blood sugar. Janet is Type 2 and is on metformin so we watch it closely. During her transplant procedure at UCSF they had to take her off the metformin and giver her insulin shots after meals. Surprisingly, for the first 5 days after the melphalan, they were giving her 8 mg dex doses. Someday I'll ask why ...
I had to have them stagger the drugs so that I could work her through the side effects smoothly (sorta
). She has an anxiety disorder and can't take unknown stressors very well. Unchecked, she can work herself up to suicidal tendencies, so it was key that every step of the way I could give her a play-by-play understanding of what's coming up.
Janet went through a series of bone pain issues prior to the start of her treatment, we really couldn't find anything. Half way through her induction cycles, it went away. Hopefully yours will too. It was a classic moment though, I'm pushing our local oncologist pretty hard, staring at the PET scan not finding anything, and he turns around and gives me the look and says "it's perfectly okay for a woman of her age to have plain old arthritis." Gotta laugh ...
PS, Janet has been home for 3 days now after her stay at UCSF and doing well.
Best of luck Moonscape
Sounds like things are starting to turn around for you! Great News!
You mentioned the dosing cycle on your RVd. With Janet, they did the same thing when we finally worked our way up to the three drug combo. i.e., the Revlimid went from a 21 day on / 7 off to a 14 day on / 7 off once we started the Velcade. I think they do this just to reduce that side effects.
You're right about the dex and blood sugar. Janet is Type 2 and is on metformin so we watch it closely. During her transplant procedure at UCSF they had to take her off the metformin and giver her insulin shots after meals. Surprisingly, for the first 5 days after the melphalan, they were giving her 8 mg dex doses. Someday I'll ask why ...
I had to have them stagger the drugs so that I could work her through the side effects smoothly (sorta

Janet went through a series of bone pain issues prior to the start of her treatment, we really couldn't find anything. Half way through her induction cycles, it went away. Hopefully yours will too. It was a classic moment though, I'm pushing our local oncologist pretty hard, staring at the PET scan not finding anything, and he turns around and gives me the look and says "it's perfectly okay for a woman of her age to have plain old arthritis." Gotta laugh ...
PS, Janet has been home for 3 days now after her stay at UCSF and doing well.
Best of luck Moonscape
-
JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
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