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Re: My Darzalex journey
Great news!
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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
Month 9: Darzalex Infusion #22 (monthly)
The positive trend continues, with only my white cell count heading the wrong way. However, my oncologist feels that my neutrophil count is what matters most, and it has been low-but-stable for months.
Here are my “bad” numbers:
IgG: 502 (659 last month)
Kappa free light chain level: 21 (43 last month)
M-spike: 0.29 g/dL (0.4 last month)
Kappa-lambda ratio: 3.78 (8.43 last month)
The positive trend continues, with only my white cell count heading the wrong way. However, my oncologist feels that my neutrophil count is what matters most, and it has been low-but-stable for months.
Here are my “bad” numbers:
IgG: 502 (659 last month)
Kappa free light chain level: 21 (43 last month)
M-spike: 0.29 g/dL (0.4 last month)
Kappa-lambda ratio: 3.78 (8.43 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
Thanks for the continuing news, and good luck! We were diagnosed around the same time, me after a sneeze broke two ribs. I started on Velcade, Revlimid, and dexamethasone, but was taken off Velcade after neuropathy issues (legs and hearing) developed. The lower-intensity treatment regimen kept my lambda light chain marker numbers down for almost a year before they started creeping back up, with only one more broken rib along the way.
I began infusion therapy with Kyprolis but suffered cardiac reactions with dangerous blood pressure spikes, so went to Empliciti. My blood pressure stabilized, but the myeloma ate up the infusions and my marker numbers shot way up. So I started on Darzalex, with dex and a bunch of other pills and the resumption of Velcade shots. Should have first marker numbers soon, and your saga gives me hope.
The Velcade is aggravating the neuropathy, but I get that there are trade-offs, and take raw cider vinegar (in juice) for cramping, and sometimes just rubbing it on my twitchy feet at night will do the job. With the dex, I find that I do a lot of creative thinking, and sometimes writing, at 3 a.m., so it stays manageable. I figure manageable is the best I can do at this time of my life, taking things one day at a time, and finding the joy in that day. I never expected to live this long!
I began infusion therapy with Kyprolis but suffered cardiac reactions with dangerous blood pressure spikes, so went to Empliciti. My blood pressure stabilized, but the myeloma ate up the infusions and my marker numbers shot way up. So I started on Darzalex, with dex and a bunch of other pills and the resumption of Velcade shots. Should have first marker numbers soon, and your saga gives me hope.
The Velcade is aggravating the neuropathy, but I get that there are trade-offs, and take raw cider vinegar (in juice) for cramping, and sometimes just rubbing it on my twitchy feet at night will do the job. With the dex, I find that I do a lot of creative thinking, and sometimes writing, at 3 a.m., so it stays manageable. I figure manageable is the best I can do at this time of my life, taking things one day at a time, and finding the joy in that day. I never expected to live this long!
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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
Such great news. So glad to see this continuing trend.
My husband's Daralex journey has also been successful. After such a scary relapse, we were very worried, but he immediately responded to the Darzalex and Pomalyst, and we have seen a continuing downward trend.
He just started his first of his monthly maintenance infusions and hopefully going monthly will not cause any increase in his numbers.
Our last report had his kappa, lambda, and ratio all in the normal range. His M-spike reports:
Ill-defined possibly abnormal band present in the gamma region without suppression of the background polyclonal gamma globulins. Correlate with serum immunofixation electrophoresis.
We just saw his specialist to review his maintenance schedule and he believes we are seeing the Darzalex rather than an actual protein band. So this would be the third month of that, and the best remission results he has ever had.
Our only issue is how low his IgG numbers are, currently at 350 mg/dL. He hasn't had too bad a time with infection, although we did just get back from Italy, and he came down with a slight repiratory infection that he is on a Z-pak for. One of the myeloma specialists we consulted said that the Darzalex definitely decreases the bad immunoglobulins but, unfortunately, the good as well. So he thinks if it continues to stay low once we go to the monthly infusion, we should consider IVIG, particularly in the fall and winter. We will see how that goes.
Here's to continued success for you Pepperink, and my husband as well! And to all on this journey.
My husband's Daralex journey has also been successful. After such a scary relapse, we were very worried, but he immediately responded to the Darzalex and Pomalyst, and we have seen a continuing downward trend.
He just started his first of his monthly maintenance infusions and hopefully going monthly will not cause any increase in his numbers.
Our last report had his kappa, lambda, and ratio all in the normal range. His M-spike reports:
Ill-defined possibly abnormal band present in the gamma region without suppression of the background polyclonal gamma globulins. Correlate with serum immunofixation electrophoresis.
We just saw his specialist to review his maintenance schedule and he believes we are seeing the Darzalex rather than an actual protein band. So this would be the third month of that, and the best remission results he has ever had.
Our only issue is how low his IgG numbers are, currently at 350 mg/dL. He hasn't had too bad a time with infection, although we did just get back from Italy, and he came down with a slight repiratory infection that he is on a Z-pak for. One of the myeloma specialists we consulted said that the Darzalex definitely decreases the bad immunoglobulins but, unfortunately, the good as well. So he thinks if it continues to stay low once we go to the monthly infusion, we should consider IVIG, particularly in the fall and winter. We will see how that goes.
Here's to continued success for you Pepperink, and my husband as well! And to all on this journey.
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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
Well, my Darzalex journey was just fine, with no apparent side effects, so yesterday my fourth treatment was to be a 90-minute infusion, plus getting off some of the drugs that go with the treatment, and – joy of joys! – reducing the dex intake. I was happy!! But 30 minutes into the faster infusion, I had a reaction: blood pressure spikes, chest and left arm discomfort. Cardiac stuff. Great staff teamwork, another blast of anti-allergy medications, and a hydralazine brought things under control, but I was exhausted. A pretty sleepless night the night before (those dexies!) hadn't helped.
Slept well last night, and this morning I feel fine, and go back for the rest of the Dazalex infusion, but back on the longer-drip regimen, with no reduction in the other meds. I should note: I seem to be one of those who don't get the most common side effects. I've not had nausea or vomiting (thank goodness!) at any step these nearly two years, but Kyprolis gave me bad blood pressure spikes, Empliciti didn't work (the myeloma ate it up!), and I 'll have my first Darzalex marker numbers in a few days. Fingers crossed!
Slept well last night, and this morning I feel fine, and go back for the rest of the Dazalex infusion, but back on the longer-drip regimen, with no reduction in the other meds. I should note: I seem to be one of those who don't get the most common side effects. I've not had nausea or vomiting (thank goodness!) at any step these nearly two years, but Kyprolis gave me bad blood pressure spikes, Empliciti didn't work (the myeloma ate it up!), and I 'll have my first Darzalex marker numbers in a few days. Fingers crossed!
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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
Hi,
I too have been following this journey as I am on my own adventure with Darzalex!
I am on a trial with Darzalex. The purpose of the trial was to frontload the Darzalex in the regular treatment regimen and so I qualified as a newly diagnosed patient in November 2017. It meant that Darzalex would be administered along with the chosen regimen all along the way.
So I had Darzalex with all my initial weekly medications on a regimen they called CyBorD-Dara, that is cyclophosphamide, dexamethasone, bortezomib (Velcade), and Darzalex. I had 16 weekly rounds of this, then an autologous stem cell transplant in May last year (tomorrow is my one-year anniversary!), and then 8 further rounds of weekly CyBorD-Dara regimen.
Then started the extra Darzalex infusions, 24 of them at four-weekly intervals, with just paracetamol (Tylenol / acetaminophen), dex, and Piriton (chlorphenamine) as pre-meds. Today I had #10.
It’s a long day, into the oncology day ward at 8 a.m., canula in (the part I like least), and an hour after the pre-meds I have the slow drip.
For the past three sessions, I have received IgIV as well, because I was having a lot of sinus and chest infections.
Everything is going well. Because it is a trial, I am monitored for minimum residual disease by examination of bone marrow aspirations, and so far there is no trace of multiple myeloma in 1 in 100,000 cells. I have an appointment with my consultant tomorrow and I am fairly confident, based on what he said last time (they just didn’t have a big enough sample the last time!) that there will be no sign of multiple myeloma in 1 in 1,000,000 cells. I am currently in complete remission.
All in all, the Darzalex seems to be working well. I am lucky in that I too have had very few bad side efffects to the drugs all along. I did have a mad reaction to the very first Darzalex infusion, but, like others here, that seemed to be expected, and the medical team acted swiftly to overcome that. During the weekly treatments, the bortezomib caused slight neuropathy and I was quite nauseous, but seemingly nothing to compared to some on this forum. I did bloat up and and lost nothing during the stem cell transplant! Still carrying two stone (28 lbs / 13 kg) extra. And dex still gets to me, nasty little bugger that it is. I have just polished off a bag of chips (fries) as I type this!
So, 14 more infusions to go. I will be finished in April 2020!
It is tedious, and sometimes wrecks my head. In fact, the whole experience is only now settling in my body and mind and I am reflecting a lot on it all. I just got on with it last year, and coped with the treatment, appointments, schedule, and fatigue. Now that there is more time in between, my body seems to be only realising what went on! Now the mental and spiritual side of it all need more attention.
I don’t post often, but I do follow some of the threads and am grateful for the support this site offers.
I wish everyone here an easy road through this disease.
I too have been following this journey as I am on my own adventure with Darzalex!
I am on a trial with Darzalex. The purpose of the trial was to frontload the Darzalex in the regular treatment regimen and so I qualified as a newly diagnosed patient in November 2017. It meant that Darzalex would be administered along with the chosen regimen all along the way.
So I had Darzalex with all my initial weekly medications on a regimen they called CyBorD-Dara, that is cyclophosphamide, dexamethasone, bortezomib (Velcade), and Darzalex. I had 16 weekly rounds of this, then an autologous stem cell transplant in May last year (tomorrow is my one-year anniversary!), and then 8 further rounds of weekly CyBorD-Dara regimen.
Then started the extra Darzalex infusions, 24 of them at four-weekly intervals, with just paracetamol (Tylenol / acetaminophen), dex, and Piriton (chlorphenamine) as pre-meds. Today I had #10.
It’s a long day, into the oncology day ward at 8 a.m., canula in (the part I like least), and an hour after the pre-meds I have the slow drip.
For the past three sessions, I have received IgIV as well, because I was having a lot of sinus and chest infections.
Everything is going well. Because it is a trial, I am monitored for minimum residual disease by examination of bone marrow aspirations, and so far there is no trace of multiple myeloma in 1 in 100,000 cells. I have an appointment with my consultant tomorrow and I am fairly confident, based on what he said last time (they just didn’t have a big enough sample the last time!) that there will be no sign of multiple myeloma in 1 in 1,000,000 cells. I am currently in complete remission.
All in all, the Darzalex seems to be working well. I am lucky in that I too have had very few bad side efffects to the drugs all along. I did have a mad reaction to the very first Darzalex infusion, but, like others here, that seemed to be expected, and the medical team acted swiftly to overcome that. During the weekly treatments, the bortezomib caused slight neuropathy and I was quite nauseous, but seemingly nothing to compared to some on this forum. I did bloat up and and lost nothing during the stem cell transplant! Still carrying two stone (28 lbs / 13 kg) extra. And dex still gets to me, nasty little bugger that it is. I have just polished off a bag of chips (fries) as I type this!
So, 14 more infusions to go. I will be finished in April 2020!
It is tedious, and sometimes wrecks my head. In fact, the whole experience is only now settling in my body and mind and I am reflecting a lot on it all. I just got on with it last year, and coped with the treatment, appointments, schedule, and fatigue. Now that there is more time in between, my body seems to be only realising what went on! Now the mental and spiritual side of it all need more attention.
I don’t post often, but I do follow some of the threads and am grateful for the support this site offers.
I wish everyone here an easy road through this disease.
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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
Sinéad,
What an amazing story! I would even say your treatment is "exotic"!
I so much appreciate that you went into detail because I have not heard of the combination you desccibe.
I will be re-reading your post to find out more about the trial.
I will look forward to future posts!
What an amazing story! I would even say your treatment is "exotic"!
I so much appreciate that you went into detail because I have not heard of the combination you desccibe.
I will be re-reading your post to find out more about the trial.
I will look forward to future posts!
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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 news for me! My lambda light chain marker numbers went in one month from 181 to 89!
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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
Month 10: Darzalex Infusion #23 (monthly)
The Darzalex / Revlimid / dexamethasone regimen continues to be effective for me. A “skeletal survey” (15 x-rays) showed nothing unusual. My red / white cell count isn’t improving much, but my “bad” counts continue to fall. For the first time, my kappa free light-chain level is in the normal range:
Kappa free light chain level: 13.3 [3.3-19.4] (21 last month)
My IgG level continues to drop below normal:
IgG: 461 [657-1610] (502 last month)
My other Immunoglobulin levels have been very low from the start, but I’ve only been sick once in the past two years and it was only a mild cold, so my oncologist feels I just need to continue being careful.
IgA: 28 [73-347]
IgM: 9 [46-304]
M-spike: 0.13 g/dL (0.29 last month)
Kappa-lambda ratio: 2.71 (3.78 last month)
The Darzalex / Revlimid / dexamethasone regimen continues to be effective for me. A “skeletal survey” (15 x-rays) showed nothing unusual. My red / white cell count isn’t improving much, but my “bad” counts continue to fall. For the first time, my kappa free light-chain level is in the normal range:
Kappa free light chain level: 13.3 [3.3-19.4] (21 last month)
My IgG level continues to drop below normal:
IgG: 461 [657-1610] (502 last month)
My other Immunoglobulin levels have been very low from the start, but I’ve only been sick once in the past two years and it was only a mild cold, so my oncologist feels I just need to continue being careful.
IgA: 28 [73-347]
IgM: 9 [46-304]
M-spike: 0.13 g/dL (0.29 last month)
Kappa-lambda ratio: 2.71 (3.78 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
Looks good Jimmie!
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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
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