I recently started treatment with Darzalex as a single-drug treatment for multiple myeloma (with 10 ml of dexamethasone on infusion days), and I thought I would share my treatment experience as it goes along.
As a bit of background, I was diagnosed with “stage 3” myeloma in June of 2017, with 50% plasma cells in my bone marrow. My biomarker report showed Gains(5, 9, 15), which is not high-risk. A skeletal survey did not detect any tumors or myeloma-related damage.
My initial weekly treatment was typical: Revlimid (10 mg), Velcade (2.1 mg/mL) , dexamethasone (40 mg).
After three weeks, my weekly blood tests showed dramatic improvement. However, during the next cycle, I had a significant reaction to Revlimid (face and arm swelling, red skin, non-itchy rash). My subsequent treatment was reduced to just Velcade and dex, but that was often interrupted by dangerously low white blood cell counts. Eventually my dosage was cut to Velcade 2.01 mg/mL and dex 20 mg. Even so, my “bad” numbers showed a slow-but-steady downward trend.
In March of 2018, I traveled for five weeks, taking 20 mg of dex per week. When I got home, I resumed the Velcade-dex treatment, but my weekly blood tests showed it had stopped working.
Last blood test before starting Darzalex: May, 2018
IgG 2488
M-spike 1.74 g/dL (called “Peak 1” on my report)
Serum free light chains (Kappa): 447 mg/L [ref. range 3.3-19.4]
Serum free light chains (Lambda): 1.4 mg/L [5.7-26.3]
Kappa- Lambda Free Light Chain Ratio: >30 [0.26-1.65]
My oncologist suggested I begin Darzalex treatment, which had only recently been approved for people in my situation. I totally agreed. I was excited about the published results and the lack of nasty side effects.
My first infusion consisted of the following (all via IV drip):
Tylenol
Pepcid (anti-nausea)
Benadryl (to minimize allergic reaction)
Dexamethasone
Darzalex (1000 ml)
The Darzalex was administered at a rate of 50 ml per hour. After an hour, the rate was increased to 100 ml. Shortly after, I began to feel a constriction in my upper chest. The drip was stopped and a second bag of Benadryl was administered, which soon stopped the reaction, although it put me to sleep.
The Darzalex drip was resumed, increasing by 50 ml per hour each hour until the rate was 200 ml. After eight hours, there was about 100 ml left in the bag, but I elected to quit.
During the following days, I did not detect any negative effects from the Darzalex. However, the dexamethasone keeps me up all night, something the oral dex did not do.
If you're interested, I posted before about my initial experience with Revlimid, Velcade, and dexamethasone, and about my first Darzalex infusion.
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
My Darzalex journey
Week 2
I have weekly blood tests the day before my Darzalex infusions.
My blood test the day before my first infusion (last week) showed an significant jump in my white blood count (WBC):
4.5 K/uL [Ref. 3.6-10.2 K/uL]
I don’t have an explanation for the jump. The week before that, the count was 3.1 K/uL. In fact, my WBC had only been within the normal range once in the year since I was diagnosed.
However, this week my WBC fell back to 3.1 K/uL. Drat.
The infusion followed the same sequence as the first one: Tylenol (acetaminophen, paracetamol)(tablets), Pepcid (famotidine), Benadryl (diphenhydramine), dexamethasone, and Darzalex. I was given another 1000 ml bag of Darzalex. I read later that the standard regimen calls for 500 ml after the first infusion. I’m all for a double dose!
My “myeloma panel” is only processed every third blood test, which includes this week:
IgG 2173 (headed the right way!)
M-spike 1.65 gm/dL (called “Peak 1” on my report) (going down)
Serum free light chains (kappa): 569 mg/L [Ref. range 3.3-19.4] (up more than 100 points)
Serum free light chains (lambda): 1.0 mg/L [5.7-26.3]
Kappa- Lambda Free Light Chain Ratio: >30 [0.26-1.65]
So far I don’t seem to have any physical effects from the treatment.
I have weekly blood tests the day before my Darzalex infusions.
My blood test the day before my first infusion (last week) showed an significant jump in my white blood count (WBC):
4.5 K/uL [Ref. 3.6-10.2 K/uL]
I don’t have an explanation for the jump. The week before that, the count was 3.1 K/uL. In fact, my WBC had only been within the normal range once in the year since I was diagnosed.
However, this week my WBC fell back to 3.1 K/uL. Drat.
The infusion followed the same sequence as the first one: Tylenol (acetaminophen, paracetamol)(tablets), Pepcid (famotidine), Benadryl (diphenhydramine), dexamethasone, and Darzalex. I was given another 1000 ml bag of Darzalex. I read later that the standard regimen calls for 500 ml after the first infusion. I’m all for a double dose!
My “myeloma panel” is only processed every third blood test, which includes this week:
IgG 2173 (headed the right way!)
M-spike 1.65 gm/dL (called “Peak 1” on my report) (going down)
Serum free light chains (kappa): 569 mg/L [Ref. range 3.3-19.4] (up more than 100 points)
Serum free light chains (lambda): 1.0 mg/L [5.7-26.3]
Kappa- Lambda Free Light Chain Ratio: >30 [0.26-1.65]
So far I don’t seem to have any physical effects from the treatment.
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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
Week 3
After taking a disheartening drop last week, my white blood count (WBC) rallied back into the normal range: 4.4 K/uL! Likewise, neutrophils are up: 2.9 [Ref. 1.7-7.6].
My Darzalex bag was reduced to 500ml, which is standard procedure. I also received a bag of Zometa, which I get every three months.
There isn’t a “myeloma panel” blood test this week.
I’ve been feeling moderately fatigued most of the past week. The fatigue magically vanishes the evening of the dexamethasone infusion and I “enjoy” a night without sleep.
After taking a disheartening drop last week, my white blood count (WBC) rallied back into the normal range: 4.4 K/uL! Likewise, neutrophils are up: 2.9 [Ref. 1.7-7.6].
My Darzalex bag was reduced to 500ml, which is standard procedure. I also received a bag of Zometa, which I get every three months.
There isn’t a “myeloma panel” blood test this week.
I’ve been feeling moderately fatigued most of the past week. The fatigue magically vanishes the evening of the dexamethasone infusion and I “enjoy” a night without sleep.
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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
Week 4
After my week 3 infusion, I was up all night Thursday, felt great Friday, slept good Friday night, felt groggy Saturday and Sunday.
Tuesday afternoon felt slightly nauseous. Wednesday still slightly nauseous with air in my stomach. Pepto-Bismol helped quite a bit. Headache Wednesday evening. Thursday, felt fine.
Thursday (Infusion day):
Blood test showed huge jump in my white blood count:
WBC: 5.5 K/uL [3.6-10.2] (Was 4.4 last week.)
Related white and red cells were all up.
Unfortunately, kidney and calcium issues popped up:
Creatinine: 1.6 mg/dL [0.7-1.3]
Calcium: 13 mg/dL [ 8.4-10.2] "Critical"
My doctor says no Darzalex this week. Instead, I'm given a liter of pamidronate (Aredia), used to treat hypercalcemia, and a liter of saline (sodium chloride/water).
Friday:
Early morning “Stat” blood test showed a good reduction in my calcium level:
Calcium: 10.6 mg/dL [8.4 mg/dL - 10.2 mg/dL]
I’m given another liter of saline. I am to come in very early Monday for another “Stat” blood test. If all is well, I will resume Darzalex treatment.
After my week 3 infusion, I was up all night Thursday, felt great Friday, slept good Friday night, felt groggy Saturday and Sunday.
Tuesday afternoon felt slightly nauseous. Wednesday still slightly nauseous with air in my stomach. Pepto-Bismol helped quite a bit. Headache Wednesday evening. Thursday, felt fine.
Thursday (Infusion day):
Blood test showed huge jump in my white blood count:
WBC: 5.5 K/uL [3.6-10.2] (Was 4.4 last week.)
Related white and red cells were all up.
Unfortunately, kidney and calcium issues popped up:
Creatinine: 1.6 mg/dL [0.7-1.3]
Calcium: 13 mg/dL [ 8.4-10.2] "Critical"
My doctor says no Darzalex this week. Instead, I'm given a liter of pamidronate (Aredia), used to treat hypercalcemia, and a liter of saline (sodium chloride/water).
Friday:
Early morning “Stat” blood test showed a good reduction in my calcium level:
Calcium: 10.6 mg/dL [8.4 mg/dL - 10.2 mg/dL]
I’m given another liter of saline. I am to come in very early Monday for another “Stat” blood test. If all is well, I will resume Darzalex treatment.
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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
Week 5
Monday:
Early morning “Stat” blood test showed significant improvement in calcium and creatinine levels.
Calcium: 10.4 [8.4-10.2] (Was 13.0 four days ago.)
Creatinine: 1.3 [.7-1.3]
Received 500 ml of Darzalex. Will have another “Stat” blood test Friday, and a visit with my oncologist Friday afternoon.
Friday:
My doctor is satisfied with my blood test. Calcium and creatinine levels are normal. White blood count shows a significant drop, but will not interfere with my next infusion (on Monday).
WBC: 3.5 [3.6-10.2]
Calcium: 9.4 [8.4-10.2]
Creatinine: 1.3 [.7-1.3]
I will now only have a 24-hour urine test twice a year, instead of every three weeks. My doctor says she relies on serum free light chains as an indicator of myeloma cell activity.
Free kappa serum: 426 [3.3-19.4] (Down from 569)
IgG: 1992 [657-1610] (Down from 2173)
Peak 1 (“M-spike): 1.53 (Down from 1.65)
Monday:
Early morning “Stat” blood test showed significant improvement in calcium and creatinine levels.
Calcium: 10.4 [8.4-10.2] (Was 13.0 four days ago.)
Creatinine: 1.3 [.7-1.3]
Received 500 ml of Darzalex. Will have another “Stat” blood test Friday, and a visit with my oncologist Friday afternoon.
Friday:
My doctor is satisfied with my blood test. Calcium and creatinine levels are normal. White blood count shows a significant drop, but will not interfere with my next infusion (on Monday).
WBC: 3.5 [3.6-10.2]
Calcium: 9.4 [8.4-10.2]
Creatinine: 1.3 [.7-1.3]
I will now only have a 24-hour urine test twice a year, instead of every three weeks. My doctor says she relies on serum free light chains as an indicator of myeloma cell activity.
Free kappa serum: 426 [3.3-19.4] (Down from 569)
IgG: 1992 [657-1610] (Down from 2173)
Peak 1 (“M-spike): 1.53 (Down from 1.65)
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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
Great going, pepperink! I know how even small improvement means a lot. I'm sure going to follow your journey. Stay blessed.
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Tamo123mir - Name: Tam
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Jan 2017
- Age at diagnosis: 57
Re: My Darzalex journey
Thanks for sharing your journey. I may need to add Darzalex to my current Velcade (every other week) maintenance.
I'm wondering if you have port or not?
I'm wondering if you have port or not?
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DexMed - Name: GV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2010 Smoldering. Symptomatic 9/2014
- Age at diagnosis: 62
Re: My Darzalex journey
Hi Dexmed,
Thanks for the note.
I don't have a port. I'm hopeful I won't need one.
The standard schedule calls for infusion every two weeks after the first eight, and once a month after the 24th. So I will put up with the needle.
--pepper
Thanks for the note.
I don't have a port. I'm hopeful I won't need one.
The standard schedule calls for infusion every two weeks after the first eight, and once a month after the 24th. So I will put up with the needle.
--pepper
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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
Week 7 (Darzalex infusion #6)
My white blood count is down again. Drat. And my calcium is up and above the normal limit. Double drat. At least my kidney function is still normal. Next week I get Zometa to counter suspected bone loss.
WBC: 3.1 K/uL [3.6-10.2]
Calcium: 10.6 mg/dL [8.4-10.2]
Creatinine: 1.2 mg/dL [.7-1.3]
Week 8 (Darzalex #7)
Last week’s blood test was very discouraging. This week’s is very encouraging (this is what many multiple myeloma folks call the “roller coaster”). White cell, red cell and other numbers that were low moved up, numbers that were high moved down.
WBC: 3.6 [3.6-10.2]
Calcium: 10 [8.4-10.2]
Creatinine: 1.3 [.7-1.3]
I also received Zometa to address the previously high calcium levels (which I “presume” means a loss of bone mass). My initial theory was that the high calcium meant the myeloma cells were greatly increasing and displacing newly created bone cells, leading to “holes” (osteolytic lesions). However, now I’m wondering if the high calcium levels could indicate a rapid release of newly created bone cells that were “behind” myeloma “tumors.” Probably not. I’ll ask my oncologist next week.
“Myeloma panel” results:
As with the CBC, values that are high trended down.
Free kappa serum: 339 mg/L [3.3-19.4] (Down from 426)
IgG: 1849 [657-1610] (Down from 1992)
Peak 1 (“M-spike): 1.47 gm/dL (Down from 1.53)
My white blood count is down again. Drat. And my calcium is up and above the normal limit. Double drat. At least my kidney function is still normal. Next week I get Zometa to counter suspected bone loss.
WBC: 3.1 K/uL [3.6-10.2]
Calcium: 10.6 mg/dL [8.4-10.2]
Creatinine: 1.2 mg/dL [.7-1.3]
Week 8 (Darzalex #7)
Last week’s blood test was very discouraging. This week’s is very encouraging (this is what many multiple myeloma folks call the “roller coaster”). White cell, red cell and other numbers that were low moved up, numbers that were high moved down.
WBC: 3.6 [3.6-10.2]
Calcium: 10 [8.4-10.2]
Creatinine: 1.3 [.7-1.3]
I also received Zometa to address the previously high calcium levels (which I “presume” means a loss of bone mass). My initial theory was that the high calcium meant the myeloma cells were greatly increasing and displacing newly created bone cells, leading to “holes” (osteolytic lesions). However, now I’m wondering if the high calcium levels could indicate a rapid release of newly created bone cells that were “behind” myeloma “tumors.” Probably not. I’ll ask my oncologist next week.
“Myeloma panel” results:
As with the CBC, values that are high trended down.
Free kappa serum: 339 mg/L [3.3-19.4] (Down from 426)
IgG: 1849 [657-1610] (Down from 1992)
Peak 1 (“M-spike): 1.47 gm/dL (Down from 1.53)
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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
Week 9 (Darzalex Infusion #8)
This was my last weekly infusion. I now will receive the infusion every two weeks (including the standard drips: Pepcid, Benadryl, and dexamethasone). After this week, I will post updates every four weeks.
My CBC blood test shows my white count making another big leap. My white count has been a real problem since I was diagnosed, impacted more by the treatment (Revlimid initially, then Velcade plus dexamethasone). Several times my treatment was suspended or the dosage was reduced. Darzalex does not seem to create that problem.
My red count remains below normal, as it has since the beginning. However, over the past six months it has slowly edged up to just below normal. Platelets and neutrophils are well within normal limits.
WBC: 4.9 K/uL [3.6-10.2] (Was 3.6 last week!)
RBC: 3.42 M/uL [4.06-5.63]
This was my last weekly infusion. I now will receive the infusion every two weeks (including the standard drips: Pepcid, Benadryl, and dexamethasone). After this week, I will post updates every four weeks.
My CBC blood test shows my white count making another big leap. My white count has been a real problem since I was diagnosed, impacted more by the treatment (Revlimid initially, then Velcade plus dexamethasone). Several times my treatment was suspended or the dosage was reduced. Darzalex does not seem to create that problem.
My red count remains below normal, as it has since the beginning. However, over the past six months it has slowly edged up to just below normal. Platelets and neutrophils are well within normal limits.
WBC: 4.9 K/uL [3.6-10.2] (Was 3.6 last week!)
RBC: 3.42 M/uL [4.06-5.63]
-
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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