Month 3 (infusion every two weeks.)
Darzalex Infusion #9
My full “myeloma panel” blood test was slightly disappointing. My white count (WBC) was down after a nice jump last time. However, my oncologist says my neutrophil count is more important, and that number has been well within the normal range most of the time I’ve been in treatment.
She also says she is basing my overall progress or lack of progress on my kappa serum free light chain number, which bounced up this time (up is bad). I understand that trends are more important than individual test results, but my free light chain numbers have bounced a lot over that past 14 months, not showing a consistent trend.
WBC: 3.2 [3.6-10.2] (Was 4.9 last test.)
Kappa free light chain level: 464 [3.3-19.4]
(Kappa was 340 last test. My initial blood test in July of 2017 was 1186.)
My oncologist wants to add a very low dose of Revlimid (2 mg) next month, which is exciting. I had a fairly major allergic reaction to 25 mg Revlimid during my initial month of treatment, but the results were dramatic. Since then, I have been hoping to give Revlimid another try.
Darzalex Infusion #10
This week’s basic blood test showed a pleasing jump in my white and absolute neutrophil count (ANC).
WBC: 4.2 [3.6-10.2]
ANC: 2.9 [1.7-7.6]
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
Hi Pepperink,
Although I have not posted in this thread until now, I've been following your Darzalex journey closely, so I thought it was about time that I let you know that I appreciate the updates you've been sharing.
I jotted down the M-spike and kappa free light chain levels that you've posted since May, and it seems to me that there is a slight downward trend in both markers.
I know it must be frustrating for you that the markers are not declining more rapidly, but you should keep in mind that you're getting just Darzalex with a little bit of dexamethasone added on. As effective a treatment as Darzalex is, it can't always work miracles, especially when it's doing so much of the work by itself.
I suspect you'll see more of a downward trend once your doctor starts layering in the Revlimid, and perhaps there also will be discussion of getting you on a bit more dexamethasone.
In any case, good luck!
Although I have not posted in this thread until now, I've been following your Darzalex journey closely, so I thought it was about time that I let you know that I appreciate the updates you've been sharing.
I jotted down the M-spike and kappa free light chain levels that you've posted since May, and it seems to me that there is a slight downward trend in both markers.
I know it must be frustrating for you that the markers are not declining more rapidly, but you should keep in mind that you're getting just Darzalex with a little bit of dexamethasone added on. As effective a treatment as Darzalex is, it can't always work miracles, especially when it's doing so much of the work by itself.
I suspect you'll see more of a downward trend once your doctor starts layering in the Revlimid, and perhaps there also will be discussion of getting you on a bit more dexamethasone.
In any case, good luck!
Re: My Darzalex journey
Cheryl,
I really appreciate your post!
Yes, it has been a little disappointing so far. I had hoped for a more impressive improvement. However, the trend is indeed downward, at a slow rate. I'm going to ask for the low dose of Revlimid at my next doctor visit.
My red count continues moving up, and is approaching the lower end of normal. So certainly something good is happening. I will post my last two blood tests next week when I get home from a trip.
Thanks again for the kind comments!
I really appreciate your post!
Yes, it has been a little disappointing so far. I had hoped for a more impressive improvement. However, the trend is indeed downward, at a slow rate. I'm going to ask for the low dose of Revlimid at my next doctor visit.
My red count continues moving up, and is approaching the lower end of normal. So certainly something good is happening. I will post my last two blood tests next week when I get home from a trip.
Thanks again for the kind comments!
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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 4: (Darzalex infusions 11, 12, and 12)
After four months of treatment I am looking for trends. As usual, my white and red cell counts are a bit worrisome. However, it appears my “bad” numbers have slowly but steadily moved lower. Perhaps, if I don’t become refractory to Darzalex too soon, I will achieve a level of response that will give me a significant period of good health.
Here are the past three CBC results:
WBC: 4.7, 4.1, 3.6 K/uL [3.6-10.2]
RBC: 3.67, 3.8, 3.53 M/uL [4.06-5.63]
Absolute neutrophils (ANC): 3.19, 2.58, 2.31 [1.7-7.6]
Here are the “bad” numbers since I began Darzalex treatment:
IgG: 2173, 1992, 1849, 1838, 1771 [657-1610]
Kappa FLC level: 569, 426, 340, 464, 386 [3.3-19.4]
Still a bit of a roller coaster, but I’m cautiously optimistic..
After four months of treatment I am looking for trends. As usual, my white and red cell counts are a bit worrisome. However, it appears my “bad” numbers have slowly but steadily moved lower. Perhaps, if I don’t become refractory to Darzalex too soon, I will achieve a level of response that will give me a significant period of good health.
Here are the past three CBC results:
WBC: 4.7, 4.1, 3.6 K/uL [3.6-10.2]
RBC: 3.67, 3.8, 3.53 M/uL [4.06-5.63]
Absolute neutrophils (ANC): 3.19, 2.58, 2.31 [1.7-7.6]
Here are the “bad” numbers since I began Darzalex treatment:
IgG: 2173, 1992, 1849, 1838, 1771 [657-1610]
Kappa FLC level: 569, 426, 340, 464, 386 [3.3-19.4]
Still a bit of a roller coaster, but I’m cautiously optimistic..
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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 4 additional info:
I forgot to include my M-spike trend.
Since I began Darzalex treatment:
M-spike: 1.47, 1.45, 1.38 g/dL
I forgot to include my M-spike trend.
Since I began Darzalex treatment:
M-spike: 1.47, 1.45, 1.38 g/dL
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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 #5 - Darzalex Infusions #14 & #15 (two weeks apart)
My latest blood test was pretty encouraging. All my good numbers went up and my bad numbers went down, with the exception of my serum kappa free light chain: From 386 to 447 mg/L. In June it was 569.
Since my first Darzalex infusion June 1st, my IgG number has decreased each blood test, from 2173 to 1689.
Likewise, my M-spike has decreased each test, from 1.65 to 1.36.
My white cell count has jumped back into the normal range, and my red count has increased every test since I began Darzalex.
WBC: 4.3 K/uL [3.6-10.2]
RBC: 3.76 M/uL [4.06-5.63]
Absolute neutrophils (ANC): 2.9 [1.7-7.6]
After my next infusion, I will be on a once-per-month infusion schedule.
My latest blood test was pretty encouraging. All my good numbers went up and my bad numbers went down, with the exception of my serum kappa free light chain: From 386 to 447 mg/L. In June it was 569.
Since my first Darzalex infusion June 1st, my IgG number has decreased each blood test, from 2173 to 1689.
Likewise, my M-spike has decreased each test, from 1.65 to 1.36.
My white cell count has jumped back into the normal range, and my red count has increased every test since I began Darzalex.
WBC: 4.3 K/uL [3.6-10.2]
RBC: 3.76 M/uL [4.06-5.63]
Absolute neutrophils (ANC): 2.9 [1.7-7.6]
After my next infusion, I will be on a once-per-month infusion schedule.
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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
Good to hear! Hoping the monthly regimen continues to work.
David
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
Thanks so much, Jimmie, for updating everyone regularly about your Darzalex treatments and results. We're sure there are many forum members and visitors who have gotten a lot out of your posts.
Are you experiencing any side effects from the treatment these days other than the blood count issues you've described?
Are you experiencing any side effects from the treatment these days other than the blood count issues you've described?
Re: My Darzalex journey
Month 5: Darzalex infusions #16 and 17 (two weeks apart)
Progress is slow but in the right direction. White blood count remains in the low-normal range. Red count is creeping toward the low limit of normal. Gamma globulin (IgG) is in the normal range for the first time at 1411 [657-1610].
My oncologist is not satisfied with my progress, however, and has prescribed 10 mg of Revlimid, taken daily for three weeks, then one week off. I totally agree with her judgment. The clock is ticking toward the time when Darzalex stops working.
Other than some shortness of breath after moderate exertion, I’ve had no physical symptoms of multiple myeloma since diagnosis 18 months ago. I’ve had no ailments since catching a cold one year ago this month. I count each day of feeling well as a huge bonus day.
Progress is slow but in the right direction. White blood count remains in the low-normal range. Red count is creeping toward the low limit of normal. Gamma globulin (IgG) is in the normal range for the first time at 1411 [657-1610].
My oncologist is not satisfied with my progress, however, and has prescribed 10 mg of Revlimid, taken daily for three weeks, then one week off. I totally agree with her judgment. The clock is ticking toward the time when Darzalex stops working.
Other than some shortness of breath after moderate exertion, I’ve had no physical symptoms of multiple myeloma since diagnosis 18 months ago. I’ve had no ailments since catching a cold one year ago this month. I count each day of feeling well as a huge bonus day.
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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 6:Darzalex infusion #18 (monthly)
“The Revlimid Rollercoaster”
Many myeloma folks have used the phrase “rollercoaster” when relating their experience with Revlimid. I concur. My infusion had to be cancelled due to a huge drop in my absolute neutrophil count (ANC): from 2.1 to 0.8 K/uL [1.7 – 7.6] in just three weeks.
This was due to three weeks of Revlimid, even though I took a lower dose (10 mg) than the 25 mg dose that is pretty much standard treatment.
In July of 2017 I had a significant allergic reaction to two weeks of Revlimid at 25 mg. This time, my scalp itched all day on the second day. I took a Claritin (loratadine) tablet, which immediately stopped the itch. I’ve had no further allergic reactions.
To address the low ANC, I was given two injections of Neupogen over two days. Here comes that rollercoaster. Only five days later my white blood count (WBC) shot up from 2.3 to 7.2 K/uL [3.6 – 10.2]. My ANC shot up from 0.8 to 4.4 K/uL [1.7 – 7.6].
To illustrate the change 18 months of treatment has made in my bone marrow (even though it has been slow improvement), I was given three injections of Neupogen in August of 2017 (two months after diagnosis of stage 3 multiple myeloma). My WBC only improved from 1.6 to 2.5 K/uL, and my ANC went up from 0.8 to 1.5 K/uL. The oncologist and I agree that my bone marrow is a great deal more healthy now. I like to hear that.
So I’m back on track with the monthly infusions. I hope it’s not a rollercoaster track.
“The Revlimid Rollercoaster”
Many myeloma folks have used the phrase “rollercoaster” when relating their experience with Revlimid. I concur. My infusion had to be cancelled due to a huge drop in my absolute neutrophil count (ANC): from 2.1 to 0.8 K/uL [1.7 – 7.6] in just three weeks.
This was due to three weeks of Revlimid, even though I took a lower dose (10 mg) than the 25 mg dose that is pretty much standard treatment.
In July of 2017 I had a significant allergic reaction to two weeks of Revlimid at 25 mg. This time, my scalp itched all day on the second day. I took a Claritin (loratadine) tablet, which immediately stopped the itch. I’ve had no further allergic reactions.
To address the low ANC, I was given two injections of Neupogen over two days. Here comes that rollercoaster. Only five days later my white blood count (WBC) shot up from 2.3 to 7.2 K/uL [3.6 – 10.2]. My ANC shot up from 0.8 to 4.4 K/uL [1.7 – 7.6].
To illustrate the change 18 months of treatment has made in my bone marrow (even though it has been slow improvement), I was given three injections of Neupogen in August of 2017 (two months after diagnosis of stage 3 multiple myeloma). My WBC only improved from 1.6 to 2.5 K/uL, and my ANC went up from 0.8 to 1.5 K/uL. The oncologist and I agree that my bone marrow is a great deal more healthy now. I like to hear that.
So I’m back on track with the monthly infusions. I hope it’s not a rollercoaster track.
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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
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