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Re: My multiple myeloma curveball
Change in the calendar. Didn't know that I needed to be on my insurance for six-months before they will greenlight a transplant...so this will bump me until February until I can get first SCT approved...as well as get the ball going on HLA typing for second planned allograft. I was hoping to get this in the bag while my insurance has been stable, but probably will need to make the leap to COBRA before then. Luckily, my provider still has me scheduled out for two more chemo cycles so it's not like I will have a huge lapse in care...if we can't get insurance to budge. Specialist wanted to get the leap on it...but still there was the possibility of chemo if they didn't like my m-spike...and frankly, I didn't want to have to pay for that extra time being out of town when I could be able to have all my numbers in place before having to travel...since my insurance doesn't cover lodging...so this may be a good thing in the long run. Still, this is a little unnerving and stressful.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Got lab results today. Doctor is very pleased with progress, but watching my low hemoglobin. Also started 5th chemotherapy cycle...still on Velcade, cytoxan, dex, and zomata. Doc will conference with Seattle about cutting out Velcade possibly, but not at the moment.
CMP TEST: All levels are in normal ranges!!!
Creatine .87
BUN 20
ALK Phos mots notable as it was 299 a month in, now 91.
Immunoglobulin/IgA:
IGA: 334
IGG: 411 Low
IGM: 53
LDH 144
Kappa FLC 4.05 High
Lambda FLC .65
K/L FLC 6.23 High
CBC
RBC 4.11 low
HGB 12.3 low
HCT 37.8 low
Immunofixation:
Gamma .4 g/dL Low
Gamma 6.8% Low
NOTES:
"Monoclonal protein band in the Beta 2 region with decreased polycolonal gamma globulin. (Consider, E.G., monoclonal gammopathy, plasma cell abnormaily/dyscrasia, lymphproloferative disorder and MGUS.)
Monoclonal protein of 6.0% and .4 g/dL
Serum IFE studies suggest IgA kappa monoclonal gammopathy."
Oh yeah...my cytogenics report done at the time of discovery...shows karyotype as normal, but FISH shows positive for +1p, +11q, -13 and 14q-. No mi gusta.....
CMP TEST: All levels are in normal ranges!!!
Creatine .87
BUN 20
ALK Phos mots notable as it was 299 a month in, now 91.
Immunoglobulin/IgA:
IGA: 334
IGG: 411 Low
IGM: 53
LDH 144
Kappa FLC 4.05 High
Lambda FLC .65
K/L FLC 6.23 High
CBC
RBC 4.11 low
HGB 12.3 low
HCT 37.8 low
Immunofixation:
Gamma .4 g/dL Low
Gamma 6.8% Low
NOTES:
"Monoclonal protein band in the Beta 2 region with decreased polycolonal gamma globulin. (Consider, E.G., monoclonal gammopathy, plasma cell abnormaily/dyscrasia, lymphproloferative disorder and MGUS.)
Monoclonal protein of 6.0% and .4 g/dL
Serum IFE studies suggest IgA kappa monoclonal gammopathy."
Oh yeah...my cytogenics report done at the time of discovery...shows karyotype as normal, but FISH shows positive for +1p, +11q, -13 and 14q-. No mi gusta.....
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
I've been in Seattle for three weeks now. Have done tons of testing and images. Really exhausting, but I am very pleased with the Seattle Cancer Care Alliance clinic. All of the staff are great, and even though there are frequent schedule changes, they seem to have their stuff together and not much falls through the cracks here.
Good news is that my M-spike, after my induction chemo, is brought down from 4.5 to a 0.1. Still, they are hoping to run a "hybrid transplant" on me -- autologous followed shortly by an allogeneic. But, for now, I am just focused on getting through this first one.
Only three days of Neupogen and on fourth day, I harvested enough in one session. Tomorrow AM, I get Melphalan. Two days later, stem cells. I feel like I'm cresting the first roller coaster stage, the moment before the initial plummet.
Good news is that my M-spike, after my induction chemo, is brought down from 4.5 to a 0.1. Still, they are hoping to run a "hybrid transplant" on me -- autologous followed shortly by an allogeneic. But, for now, I am just focused on getting through this first one.
Only three days of Neupogen and on fourth day, I harvested enough in one session. Tomorrow AM, I get Melphalan. Two days later, stem cells. I feel like I'm cresting the first roller coaster stage, the moment before the initial plummet.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Hi Standing Tall,
It sounds like things are going well for you. I did an auto last October and I remember that feeling you're talking about. You describe it well. I came out feeling better than I expected. I hope you have the same experience. One day at a time. All my best thoughts and wishes for success in your transplant.
It sounds like things are going well for you. I did an auto last October and I remember that feeling you're talking about. You describe it well. I came out feeling better than I expected. I hope you have the same experience. One day at a time. All my best thoughts and wishes for success in your transplant.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: My multiple myeloma curveball
It's been 5 months since my SCT. It went very well, as I was free to leave Seattle 28 days after transplant. I was only inpatient for about 8 days when I had a slight fever ... but I bounced back once my neutrophils started reappearing.
My 90 day biopsy showed that I am in remission, which is great. So I am in the process of trying to piece my life together under the uncertainty of relapse.
Still, I fell short of my planned treatment as I was to do an allo transplant as well, but I have such a unique HLA that a full-match isn't even remotely possible ... and a half-match is still a long stretch. I opted to no push for it since I have had such a great response with my treatment.
I am receiving Disability, approved for a year. I also am getting Long-Term Disability help through my former employer ... but they cut the amount way down once I notified them of getting govt Disability.
Next step is addressing my back. I met with an interventional radiologist for a kyphoplasty procedure, but my imaging shows that my T11 had been crushed paper thin, not giving him anything to work with. So now I have to look around.
I get around pretty well, but if I am walking or standing for an extended period of time, my back starts to hurt. I really don't want to go as extreme as a disk replacement, but I certainly need to think about it ....especially since I am just turning 40 in a couple months and hopefully have some years ahead of me.
Bankruptcy is fun.
My 90 day biopsy showed that I am in remission, which is great. So I am in the process of trying to piece my life together under the uncertainty of relapse.
Still, I fell short of my planned treatment as I was to do an allo transplant as well, but I have such a unique HLA that a full-match isn't even remotely possible ... and a half-match is still a long stretch. I opted to no push for it since I have had such a great response with my treatment.
I am receiving Disability, approved for a year. I also am getting Long-Term Disability help through my former employer ... but they cut the amount way down once I notified them of getting govt Disability.
Next step is addressing my back. I met with an interventional radiologist for a kyphoplasty procedure, but my imaging shows that my T11 had been crushed paper thin, not giving him anything to work with. So now I have to look around.
I get around pretty well, but if I am walking or standing for an extended period of time, my back starts to hurt. I really don't want to go as extreme as a disk replacement, but I certainly need to think about it ....especially since I am just turning 40 in a couple months and hopefully have some years ahead of me.
Bankruptcy is fun.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
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