Month 18 & 19: Darzalex Infusion #31 & 32 (monthly)
First of all, I sincerely appreciate the kind and encouraging comments some have posted! I know there are other readers who echo those sentiments. This is my outlet for expressing my myeloma experiences and concerns, so thank you Myeloma Beacon Forum and all you members!
My blood test results this month are virtually identical to the previous two, which is great. My M-spike is still detectable but too low to measure.
My oncologist has prescribed a pill that combines calcium and vitamin D. This is to ensure that the Zometa (zoledronic acid) I receive four times a year is able to gather free calcium for bone strengthening. She says the vitamin D is needed to facilitate absorption of the calcium. My phosphorus level is a bit low, which hopefully can be solved by diet (chicken, fish, dairy, etc.).
Forums
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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 20 & 21: Darzalex Infusion #33 & 34 (monthly)
My blood tests continue to remain virtually identical to the previous months, which is a great thing. I had to change to a different lab (same company), and my white count was quite a bit lower than the blood test performed a week later by my infusion nurse, which was in line with the previous months results.
I was disappointed to read a post a few weeks ago by a Myeloma Beacon member whose Darzalex therapy only worked for four months. I’m coming up on two years of Darzalex and I’m starting to get a bit apprehensive about any indication that the treatment is beginning to fail.
WBC (white count): 2.9 K/uL [3.6-10.2] (Was 3.85 a week later.)
RBC (red count): RBC: 4.4 M/uL [4.06-5.63]
ANC (absolute neutrophil): 1.3 K/ul [1.7 – 7.6] (Was 2.15 a week later.)
M-spike: “detectable, but too low to measure” (Sweet words!)
Kappa free light chain level (serum): 8.67 mg/dL [3.3-19.4]
My blood tests continue to remain virtually identical to the previous months, which is a great thing. I had to change to a different lab (same company), and my white count was quite a bit lower than the blood test performed a week later by my infusion nurse, which was in line with the previous months results.
I was disappointed to read a post a few weeks ago by a Myeloma Beacon member whose Darzalex therapy only worked for four months. I’m coming up on two years of Darzalex and I’m starting to get a bit apprehensive about any indication that the treatment is beginning to fail.
WBC (white count): 2.9 K/uL [3.6-10.2] (Was 3.85 a week later.)
RBC (red count): RBC: 4.4 M/uL [4.06-5.63]
ANC (absolute neutrophil): 1.3 K/ul [1.7 – 7.6] (Was 2.15 a week later.)
M-spike: “detectable, but too low to measure” (Sweet words!)
Kappa free light chain level (serum): 8.67 mg/dL [3.3-19.4]
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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,
I think that your concerns about Darzalex not continuing to work for your myeloma should only remain a question. Since Darzalex is still a relatively new drug, I don't think there really are enough statistics to say how long it would work to hold off the myeloma in a case such as yours.
Hope you are continuing to do well on the treatment,
Nancy.
I think that your concerns about Darzalex not continuing to work for your myeloma should only remain a question. Since Darzalex is still a relatively new drug, I don't think there really are enough statistics to say how long it would work to hold off the myeloma in a case such as yours.
Hope you are continuing to do well on the treatment,
Nancy.
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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 22, 23 & 24: Darzalex Infusions #35, 36, 37 (monthly)
“Total remission.” That’s what my oncologist told me last month. My reaction surprises me. When it was “detectable, but not measurable,” I felt really good about that. But for some reason I can’t quite trust the word “remission.” I guess it’s a defense mechanism of some sort. I’m still trying to pin down why it makes me a little insecure. Maybe it’s because there’s nowhere to go now but down.
My white blood count continues to bounce above and below the minimum normal level, and my red blood count hovers just above minimum. I’ve had no illnesses since a slight cold six months ago. Apparently my weak immune system rises to the occasion when needed.
At my most recent visit with my oncologist, she considers me “on maintenance” with the Darzalex regimen. Music to my ears!
“Total remission.” That’s what my oncologist told me last month. My reaction surprises me. When it was “detectable, but not measurable,” I felt really good about that. But for some reason I can’t quite trust the word “remission.” I guess it’s a defense mechanism of some sort. I’m still trying to pin down why it makes me a little insecure. Maybe it’s because there’s nowhere to go now but down.
My white blood count continues to bounce above and below the minimum normal level, and my red blood count hovers just above minimum. I’ve had no illnesses since a slight cold six months ago. Apparently my weak immune system rises to the occasion when needed.
At my most recent visit with my oncologist, she considers me “on maintenance” with the Darzalex regimen. Music to my ears!
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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
Wow, congratulations!
I do somewhat understand the idea that there's "nowhere to go but down". If this disease were curable, then total remission would mean something different.
I hope you have many years ahead of you with the current status quo!
I do somewhat understand the idea that there's "nowhere to go but down". If this disease were curable, then total remission would mean something different.
I hope you have many years ahead of you with the current status quo!
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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
Re: My Darzalex journey
Month 25, 26, 27/28: Darzalex Infusions #38, 39, 40 (monthly)
To recap a bit: At diagnosis I was “stage 4,” with 90% myeloma cells in my bone marrow, but no symptoms except anemia. After many problems and setbacks the first year of treatment, my oncologist suggested treatment with Darzalex. My bad and good numbers began to improve, but my doctor was not satisfied with the rate of improvement and recommended adding a low dose (5 mg) of Revlimid to the treatment regimen (I’m very allergic to the standard 25 mg dose).
The result was very positive and brought me to the “detectable but not measurable” state. After two and a half years, Darzalex and Revlimid are still holding the myeloma at bay, and I’m so grateful.
Last month, for the first time, I went more than four weeks between infusions in order to take an RV trip up the coast of Oregon. It made me very apprehensive to go six weeks between treatments, but I wanted to travel while my health remains good. My doctor always says, “Live your life,” rather than hunkering down at home every day.
So now I have the first blood test results since the trip. My “good” numbers are slightly lower and my “bad” numbers are slightly higher. Most alarming is that my “spike” number is measurable, after ten months of being “too low to measure.” I will be on pins and needles until my next blood test. No more infusion “vacation delays” for me!
WBC (white count): 3.8 K/uL [3.6-10.2] (Was 4.6 last month.)
RBC (red count): RBC: 4.28 M/uL [4.06-5.63] (Was 4.11 last month. Hey! it’s a bit higher!)
ANC (absolute neutrophil): 1.8 K/ul [1.7 – 7.6] (Was 2.7 last month.)
M-spike: 0.15 g/dL (Was “unmeasurable" last month)
To recap a bit: At diagnosis I was “stage 4,” with 90% myeloma cells in my bone marrow, but no symptoms except anemia. After many problems and setbacks the first year of treatment, my oncologist suggested treatment with Darzalex. My bad and good numbers began to improve, but my doctor was not satisfied with the rate of improvement and recommended adding a low dose (5 mg) of Revlimid to the treatment regimen (I’m very allergic to the standard 25 mg dose).
The result was very positive and brought me to the “detectable but not measurable” state. After two and a half years, Darzalex and Revlimid are still holding the myeloma at bay, and I’m so grateful.
Last month, for the first time, I went more than four weeks between infusions in order to take an RV trip up the coast of Oregon. It made me very apprehensive to go six weeks between treatments, but I wanted to travel while my health remains good. My doctor always says, “Live your life,” rather than hunkering down at home every day.
So now I have the first blood test results since the trip. My “good” numbers are slightly lower and my “bad” numbers are slightly higher. Most alarming is that my “spike” number is measurable, after ten months of being “too low to measure.” I will be on pins and needles until my next blood test. No more infusion “vacation delays” for me!
WBC (white count): 3.8 K/uL [3.6-10.2] (Was 4.6 last month.)
RBC (red count): RBC: 4.28 M/uL [4.06-5.63] (Was 4.11 last month. Hey! it’s a bit higher!)
ANC (absolute neutrophil): 1.8 K/ul [1.7 – 7.6] (Was 2.7 last month.)
M-spike: 0.15 g/dL (Was “unmeasurable" 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
Sounds like you are doing great! Not much of a change given the treatment holiday.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: My Darzalex journey
Geez, that didn't take long. I hope that getting back on the Darzalex knocks those numbers right back down again!
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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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