Thanks for the update, Jimmie.
I didn't see any M-spike number in your most recent report. Is it currently zero?
Your free light chain results have made me wonder if the response to Darzalex is difficult to interpret in the usual way if the patient has light chain myeloma. The drug seems to suppress free light chain levels rather indiscriminately, basically taking away the kappa/lambda ratio as a way to monitor the disease except when the disease is noticeably no longer under control.
Forums
Re: My Darzalex journey
Hi Cheryl,
Thanks for the comments!
I didn't realize I didn't have the M-spike number when I posted. It was 0.1 g/dL (0.11 the previous month).
I'm not knowledgeable enough to know what you mean about the suppression of free light chain levels.
Unfortunately for me, the doctor who treated me for two years left suddenly without a final consultation. My current (temporary) doctor spends two minutes reviewing my latest lab results and doesn't really know the ups and downs of my treatment. He was satisfied with the numbers and scheduled another visit in two months.
I am continuing to search for my original doctor and hope to resume treatment with her eventually.
Thanks for the comments!
I didn't realize I didn't have the M-spike number when I posted. It was 0.1 g/dL (0.11 the previous month).
I'm not knowledgeable enough to know what you mean about the suppression of free light chain levels.
Unfortunately for me, the doctor who treated me for two years left suddenly without a final consultation. My current (temporary) doctor spends two minutes reviewing my latest lab results and doesn't really know the ups and downs of my treatment. He was satisfied with the numbers and scheduled another visit in two months.
I am continuing to search for my original doctor and hope to resume treatment with her eventually.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: My Darzalex journey
Month 15: Darzalex Infusion #28 (monthly)
No doctor consultation this month due to a shortage after three suddenly left in June, including “my” doctor.
I only received the basic CBC blood test, so no myeloma numbers this month.
My only physical symptom continues to be fatigue.
WBC (white count): 3.6 K/uL [3.6-10.2] (Was 3.1 last month.)
RBC (red count): 4.26 M/uL [4.06-5.63] (Was 4.45 last month.)
ANC (absolute neutrophil): 1.6 K/ul [1.7 – 7.6] (Was 1.3 last month.)
No doctor consultation this month due to a shortage after three suddenly left in June, including “my” doctor.
I only received the basic CBC blood test, so no myeloma numbers this month.
My only physical symptom continues to be fatigue.
WBC (white count): 3.6 K/uL [3.6-10.2] (Was 3.1 last month.)
RBC (red count): 4.26 M/uL [4.06-5.63] (Was 4.45 last month.)
ANC (absolute neutrophil): 1.6 K/ul [1.7 – 7.6] (Was 1.3 last month.)
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: My Darzalex journey
Hello Pepperink,
Thanks for posting your journey using Darzalex, along with Revlimid and (sometimes). This treatment is also being used where I live.
Good luck!
Thanks for posting your journey using Darzalex, along with Revlimid and (sometimes). This treatment is also being used where I live.
Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My Darzalex journey
Month 16: Darzalex Infusion #29 (monthly)
My blood/urine test numbers are incomplete, for some reason, but it appears that I have pretty much plateaued at a fairly low level of myeloma involvement. The oncologist who is monitoring me now used the term “inactive,” but when I look up the definition as it applies to myeloma I believe I would use the word “suppressed” instead, because the presence of bad plasma cells is still clearly detectable.
I continue to have no negative symptoms, aside from some noticeable lack of stamina.
WBC (white count): 3.5 K/uL [3.6-10.2] (Was 3.6 last month.)
RBC (red count): RBC: 4.53 M/uL [4.06-5.63] (Was 4.26 last month.)
ANC (absolute neutrophil): 2.1 K/ul [1.7 – 7.6] (Was 1.6 last month.)
M-spike: 0.09 g/dL (0.1 last test)
Kappa free light chains (serum): 9.49 mg/dL [3.3-19.4] (8.3 last month)
My blood/urine test numbers are incomplete, for some reason, but it appears that I have pretty much plateaued at a fairly low level of myeloma involvement. The oncologist who is monitoring me now used the term “inactive,” but when I look up the definition as it applies to myeloma I believe I would use the word “suppressed” instead, because the presence of bad plasma cells is still clearly detectable.
I continue to have no negative symptoms, aside from some noticeable lack of stamina.
WBC (white count): 3.5 K/uL [3.6-10.2] (Was 3.6 last month.)
RBC (red count): RBC: 4.53 M/uL [4.06-5.63] (Was 4.26 last month.)
ANC (absolute neutrophil): 2.1 K/ul [1.7 – 7.6] (Was 1.6 last month.)
M-spike: 0.09 g/dL (0.1 last test)
Kappa free light chains (serum): 9.49 mg/dL [3.3-19.4] (8.3 last month)
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: My Darzalex journey
Month 17: Darzalex Infusion #30 (monthly)
The big news in my world is that the oncologist who diagnosed and treated me has been found. As I mentioned previously, she and two other oncologists quit abruptly in June, leaving me with a temporary doctor who is knowledgeable but does not know my ups and downs over the first two years.
So now I drive 45 minutes further but I’m back with “my own” doctor. I’m sure other myeloma patients understand how important the relationship is and how important total trust is.
My blood test results are still about the same, although I may be seeing a tiny uptick in the bad numbers. Whatever happens in the future, I am very grateful for the 18 months of good health I have enjoyed with Darzalex, with zero side effects. And having an infusion once per month is no burden for me.
WBC (white count): 3.6 K/uL [3.6-10.2] (Was 3.5 last month.)
RBC (red count): 4.33 M/uL [4.06-5.63] (Was 4.53 last month.)
ANC (absolute neutrophil): 2.1 K/ul [1.7 – 7.6] (Was 2.1 last month.)
Kappa free light chains (serum): 10.4 mg/dL [3.3-19.4] (9.49 last month)
IgG: 461 [657-1610] (Not posted last month. Was 437 two months ago.)
The big news in my world is that the oncologist who diagnosed and treated me has been found. As I mentioned previously, she and two other oncologists quit abruptly in June, leaving me with a temporary doctor who is knowledgeable but does not know my ups and downs over the first two years.
So now I drive 45 minutes further but I’m back with “my own” doctor. I’m sure other myeloma patients understand how important the relationship is and how important total trust is.
My blood test results are still about the same, although I may be seeing a tiny uptick in the bad numbers. Whatever happens in the future, I am very grateful for the 18 months of good health I have enjoyed with Darzalex, with zero side effects. And having an infusion once per month is no burden for me.
WBC (white count): 3.6 K/uL [3.6-10.2] (Was 3.5 last month.)
RBC (red count): 4.33 M/uL [4.06-5.63] (Was 4.53 last month.)
ANC (absolute neutrophil): 2.1 K/ul [1.7 – 7.6] (Was 2.1 last month.)
Kappa free light chains (serum): 10.4 mg/dL [3.3-19.4] (9.49 last month)
IgG: 461 [657-1610] (Not posted last month. Was 437 two months ago.)
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: My Darzalex journey
Pepperlink,
Glad to hear of your success to date.
David
Glad to hear of your success to date.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: My Darzalex journey
Hi Pepperllnk, It's good to know that you found out where your former oncologist is working now, and could reconnect with her practice. It looks like your lab results are quite stable and I hope that continues on also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My Darzalex journey
Update Re: Month 17: Darzalex Infusion #30 (monthly)
My previous post did not list an M-spike value because there was no entry on my blood test printout. I was disappointed. But yesterday I happened to look at the comments section and discovered the reason: My M-spike is “undetectable."
Wow! I did not expect that would ever happen.
When I was diagnosed two-and-a-half years ago, my M-spike was 2.94 g/dL (29.4 g/L). It came down very slowly, but did not make a dramatic change until a small 5 mg dose of Revlimid was added (the dose is small because I’m allergic to it).
I also had a skeletal survey (13 x-rays) done last week. It showed no abnormalities.
M-spike: “Undetectable”! (0.09 last test)
My previous post did not list an M-spike value because there was no entry on my blood test printout. I was disappointed. But yesterday I happened to look at the comments section and discovered the reason: My M-spike is “undetectable."
Wow! I did not expect that would ever happen.
When I was diagnosed two-and-a-half years ago, my M-spike was 2.94 g/dL (29.4 g/L). It came down very slowly, but did not make a dramatic change until a small 5 mg dose of Revlimid was added (the dose is small because I’m allergic to it).
I also had a skeletal survey (13 x-rays) done last week. It showed no abnormalities.
M-spike: “Undetectable”! (0.09 last test)
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: My Darzalex journey
That's one heck of a Christmas present - congratulations!!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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