Month 11: Darzalex Infusion #24 (monthly)
It’s another month with nothing but good news. My numbers are rapidly approaching normal. I’m very pleased with my Darzalex regimen. I should note that the results weren’t dramatic until a low dose of Revlimid (5 mg) was added last November.
The headline for this month is that my kappa free light chains (urine) is in the normal range for the first time:
Kappa free light chains (urine): 0.88 mg/dL [0.14-2.42] (was 3.68 two months ago)
My white blood count has moved into the bottom of the normal range for the first time since December:
WBC: 3.7 K/uL [3.6-10.2] (was 3.1 last month)
Neutrophils: 1.7 K/uL [1.7-7.6] (was 1.3 last month)
IgG has leveled off (that’s good thing):
IgG: 460 [657-1610] (461 last month)
M-spike: 0.15 g/dL (0.13 last month)
Forums
-
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
Congratulations Pepperink!
My husband is also doing really well on Darzalex and Pomalyst (2 mg). He is on the monthly regimen and last month he also had IVIG infused during the same visit. His IgG had gone down to 305 and he had two respiratory infections in a month, so his doctor decided to add this. He had no issue with the infusion, and his last IgG test showed an increase to 609 and he has been feeling so much better.
His kappa and lambda levels are normal and his ratio is 0.55. No M-spike and this is now the fifth month of that. This is the first treatment that has gotten these results for him, so we are keeping the faith.
May these results continue for you and my husband!
My husband is also doing really well on Darzalex and Pomalyst (2 mg). He is on the monthly regimen and last month he also had IVIG infused during the same visit. His IgG had gone down to 305 and he had two respiratory infections in a month, so his doctor decided to add this. He had no issue with the infusion, and his last IgG test showed an increase to 609 and he has been feeling so much better.
His kappa and lambda levels are normal and his ratio is 0.55. No M-spike and this is now the fifth month of that. This is the first treatment that has gotten these results for him, so we are keeping the faith.
May these results continue for you and my husband!
-
Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: My Darzalex journey
Continuing the tale:
Last time I posted, I was to see my consultant and get results from the previous bone marrow sample, hoping for no sign of mutiple myeloma in 1 in 1,000,000 cells.
Well, I was given the good news that I had achieved same, and was in stringent complete remission! My consultant did caution me, however, not to be complacent, as I am not at low risk, and will probably need further medication when I am finished with maintenance.
For now, though, I go for the 12th infusion of Darzalex next week (halfway there), and I am finally beginning to feel like myself again. The week of the infusion can be topsy turvy, but three out of four weeks, I am fine.
And the initial results of the trial I am on have been published:
O'Dwyer, M, et al, "CyBorD-DARA is potent initial induction for multiple myeloma and enhances ADCP: initial results of the 16-BCNI-001/CTRIAL-IE 16-02 study," Blood Advances, June 25, 2019 (full text of article)
So, onwards with the Darzalex, and hopefully the treatment regimen will become readily available to all, with the same good results.
Last time I posted, I was to see my consultant and get results from the previous bone marrow sample, hoping for no sign of mutiple myeloma in 1 in 1,000,000 cells.
Well, I was given the good news that I had achieved same, and was in stringent complete remission! My consultant did caution me, however, not to be complacent, as I am not at low risk, and will probably need further medication when I am finished with maintenance.
For now, though, I go for the 12th infusion of Darzalex next week (halfway there), and I am finally beginning to feel like myself again. The week of the infusion can be topsy turvy, but three out of four weeks, I am fine.
And the initial results of the trial I am on have been published:
O'Dwyer, M, et al, "CyBorD-DARA is potent initial induction for multiple myeloma and enhances ADCP: initial results of the 16-BCNI-001/CTRIAL-IE 16-02 study," Blood Advances, June 25, 2019 (full text of article)
So, onwards with the Darzalex, and hopefully the treatment regimen will become readily available to all, with the same good results.
-
Sinead50 - Name: Sinéad Ní Ghuidhir
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3November 2017
- Age at diagnosis: 50
Re: My Darzalex journey
The good news is that Darzalex is about to be approved for subcutaneous shot as opposed to infusion. Similar to the route that Velcade went a few years ago.
"Genmab Announces Positive Topline Results In Phase III COLUMBA Study Of Subcutaneous Daratumumab," Genmab press release, Feb 25, 2019
"Genmab Announces Positive Topline Results In Phase III COLUMBA Study Of Subcutaneous Daratumumab," Genmab press release, Feb 25, 2019
-
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
Month 12: Darzalex Infusion #25 (monthly)
Good news, bad news
First of all, my blood test numbers are all good. The healthy cells are increasing, and the unhealthy cells are decreasing.
For the first time, my kappa/lambda free light chain ratio (serum) is within normal limits. It does look like the bad numbers are leveling off, however.
M-spike: 0.11 g/dL (0.15 last month)
Free kappa light chains (serum): 7.8 mg/dL [3.3-19.4] (was 13.3 last month)
Free kappa/lambda ratio: 1.63 [0.26-1.65] (was 1.94 last month)
Free kappa light chains (urine): 1.1 mg/dL [0.14-2.42] (was 0.88 last month)
The bad news: My oncologist and four other doctors left my cancer clinic abruptly, due to involuntary employment changes. I did not receive a final review or a “handover” to another doctor. My last two visits with a doctor were with someone who has no knowledge of my last two years of treatment.
I will be traveling out of state for the next ten weeks. So I won’t know until late September who my permanent doctor will be. Fortunately, the wonderful clinic staff helped me make arrangements to receive my normal Darzalex treatment in Cheyenne, Wyoming (July) and Meridian, Idaho (August).
Good news, bad news
First of all, my blood test numbers are all good. The healthy cells are increasing, and the unhealthy cells are decreasing.
For the first time, my kappa/lambda free light chain ratio (serum) is within normal limits. It does look like the bad numbers are leveling off, however.
M-spike: 0.11 g/dL (0.15 last month)
Free kappa light chains (serum): 7.8 mg/dL [3.3-19.4] (was 13.3 last month)
Free kappa/lambda ratio: 1.63 [0.26-1.65] (was 1.94 last month)
Free kappa light chains (urine): 1.1 mg/dL [0.14-2.42] (was 0.88 last month)
The bad news: My oncologist and four other doctors left my cancer clinic abruptly, due to involuntary employment changes. I did not receive a final review or a “handover” to another doctor. My last two visits with a doctor were with someone who has no knowledge of my last two years of treatment.
I will be traveling out of state for the next ten weeks. So I won’t know until late September who my permanent doctor will be. Fortunately, the wonderful clinic staff helped me make arrangements to receive my normal Darzalex treatment in Cheyenne, Wyoming (July) and Meridian, Idaho (August).
-
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
Sorry to hear about the change in oncologists. It can be unnerving to begin working with a new team.
But it's really great to see how much your numbers have improved.
I've been quietly following along as my partner recently began Darzalex (daratumumab) along with Revlimid and dex. He's had four infusions so far and we just received his results. He has IgA kappa myeloma and, similar to you, his M protein dropped, perhaps not as much as we'd hoped, but still, a good start! Interestingly, his kappa light chains increased, as did yours initially. It's comforting to see that this was not predictive of the trend for you.
Thanks for the continued updates. This thread has been an appreciated resource leading up to and during the initial stages of this treatment.
But it's really great to see how much your numbers have improved.
I've been quietly following along as my partner recently began Darzalex (daratumumab) along with Revlimid and dex. He's had four infusions so far and we just received his results. He has IgA kappa myeloma and, similar to you, his M protein dropped, perhaps not as much as we'd hoped, but still, a good start! Interestingly, his kappa light chains increased, as did yours initially. It's comforting to see that this was not predictive of the trend for you.
Thanks for the continued updates. This thread has been an appreciated resource leading up to and during the initial stages of this treatment.
-
nic1 - Name: Nic1986
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 2017
- Age at diagnosis: 30
Re: My Darzalex journey
It looks like my own Darzalex journey has come to an end. I started a Darzalex, Velcade, and dex regimen – plus acyclovir and montelukast (Singulair) – in March when Empliciti raised my lambda light chain marker numbers from 92 to 191. I had been down as low as 29 before Revlimid, Velcade, and dex stopped working after almost a year; 26 is the high normal, up to 50 at my age, 81. The Velcade was actually stopped earlier due to neuropathy issues, including a rare auditory neuropathy that muffles my hearing.
There was an initial drop to 89, and I tolerated it so well they tried me on a shorter infusion time, but that didn't work. Bad blood pressure spike, as happened dangerously when I was on Kyprolis. Then I came down with pneumonia that interrupted treatment while I was put on IV antibiotics.
Resumed Darzalex in May, but my numbers shot up to 230, then down to 160, then up to 313 and, most recently, 363. My number at diagnosis, when I sneezed and broke two ribs, was 269.
So I'll be going back to a "tried and true" regimen next week (Velcade, cyclophosphamide, and dex), pills and an injection, no infusion (except probably for continuing Zometa infusions every three months).
We are all different, and my reactions may not be anyone else's. For those whose Darzalex is working, right on! For me, time to move on. I am grateful that my side effects have not included nausea and vomiting. So far. The others, well, I understand that there are tradeoffs to keep the myeloma at bay. One day at a time. I read, write, and try to find the joy in each and every day, with the help and support of my loving spouse, Kaitlin.
I recently read Dr. Oliver Sacks's little book, Gratitude, four essays written shortly before cancer took him in 2015, and will close with this quote:
“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written ... Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure."
There was an initial drop to 89, and I tolerated it so well they tried me on a shorter infusion time, but that didn't work. Bad blood pressure spike, as happened dangerously when I was on Kyprolis. Then I came down with pneumonia that interrupted treatment while I was put on IV antibiotics.
Resumed Darzalex in May, but my numbers shot up to 230, then down to 160, then up to 313 and, most recently, 363. My number at diagnosis, when I sneezed and broke two ribs, was 269.
So I'll be going back to a "tried and true" regimen next week (Velcade, cyclophosphamide, and dex), pills and an injection, no infusion (except probably for continuing Zometa infusions every three months).
We are all different, and my reactions may not be anyone else's. For those whose Darzalex is working, right on! For me, time to move on. I am grateful that my side effects have not included nausea and vomiting. So far. The others, well, I understand that there are tradeoffs to keep the myeloma at bay. One day at a time. I read, write, and try to find the joy in each and every day, with the help and support of my loving spouse, Kaitlin.
I recently read Dr. Oliver Sacks's little book, Gratitude, four essays written shortly before cancer took him in 2015, and will close with this quote:
“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written ... Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure."
-
albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
Re: My Darzalex journey
Albert,
I am sorry to hear that Darzalex did not work for you. You are so right about how we all react differently to multiple myeloma. I really admire you positive attitude and pray that they find an effective treatment for you without unmanageable side effects.
I am sorry to hear that Darzalex did not work for you. You are so right about how we all react differently to multiple myeloma. I really admire you positive attitude and pray that they find an effective treatment for you without unmanageable side effects.
-
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
Month 13: Darzalex infusion #26 (monthly) ("Cheyenne results")
Last month (July), I was traveling out of state. In June, the extremely helpful folks at my home oncology center and a center in Cheyenne, Wyoming arranged for me to have my monthly infusion in Cheyenne.
At my interview with the oncologist, I received a printout of my blood test, so there wasn’t time to study the results and ask questions. Also, the full results weren’t yet available. However, the doctor was pleased with my printout of the previous month’s tests and the current partial results.
I don’t find an “M-spike” number on the Cheyenne test results, but my “bad” numbers were about the same as the previous month:
IgG: 387 [657-1610] (418 last month)
Free Kappa light chains (serum): 8.4 mg/dL [3.3-19.4] (7.8 last month)
Free Lambda light chains (serum): <0.16 mg/dL [0.57-2.63]
Free kappa/lambda ratio: “Unable to calculate ratio due to undetectable concentration of free kappa and/or free lambda light chains (1.94 last month).
Last month (July), I was traveling out of state. In June, the extremely helpful folks at my home oncology center and a center in Cheyenne, Wyoming arranged for me to have my monthly infusion in Cheyenne.
At my interview with the oncologist, I received a printout of my blood test, so there wasn’t time to study the results and ask questions. Also, the full results weren’t yet available. However, the doctor was pleased with my printout of the previous month’s tests and the current partial results.
I don’t find an “M-spike” number on the Cheyenne test results, but my “bad” numbers were about the same as the previous month:
IgG: 387 [657-1610] (418 last month)
Free Kappa light chains (serum): 8.4 mg/dL [3.3-19.4] (7.8 last month)
Free Lambda light chains (serum): <0.16 mg/dL [0.57-2.63]
Free kappa/lambda ratio: “Unable to calculate ratio due to undetectable concentration of free kappa and/or free lambda light chains (1.94 last month).
-
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 14: Darzalex Infusion #27 (monthly)
All my “good” and “bad” numbers moved in the right direction, excepting my white blood count (WBC), which apparently is being impacted by the Darzalex treatment. The movement is not dramatic, but is satisfying.
My IgG number moved up, but that is probably a good thing considering it has been below normal for the past nine months.
IgG: 437 [657-1610] (387 last month)
Free kappa light chains (serum): 8.3 mg/dL [3.3-19.4] (8.4 last month)
Free kappa light chains (urine): 0.76 mg/dL [0.14-2.42] (1.1 two months ago)
All my “good” and “bad” numbers moved in the right direction, excepting my white blood count (WBC), which apparently is being impacted by the Darzalex treatment. The movement is not dramatic, but is satisfying.
My IgG number moved up, but that is probably a good thing considering it has been below normal for the past nine months.
IgG: 437 [657-1610] (387 last month)
Free kappa light chains (serum): 8.3 mg/dL [3.3-19.4] (8.4 last month)
Free kappa light chains (urine): 0.76 mg/dL [0.14-2.42] (1.1 two months ago)
-
Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Return to Treatments & Side Effects