Jackbo1,
Please keep us informed if your discussion with the FDA leads to the conclusion that your intensified peripheral neuropathy has anything to do with Darzalex.
Best wishes,
Bulder
Forums
Re: Daratumumab (Darzalex) is working for me
Continues to work for my wife:
Daratumumab, Pomalyst, and dex; had to lower Pomalyst to 2 mg 4 days a week.
Incredible numbers: lambda light chains went from 332 to 0.63. IgG is down to 562 from 4900 - immediate, radical response.
The doctor is scared to take her off Pomalyst because she is refractory to everything else. If this treatment stops working, we don't know what comes next.
Daratumumab, Pomalyst, and dex; had to lower Pomalyst to 2 mg 4 days a week.
Incredible numbers: lambda light chains went from 332 to 0.63. IgG is down to 562 from 4900 - immediate, radical response.
The doctor is scared to take her off Pomalyst because she is refractory to everything else. If this treatment stops working, we don't know what comes next.
Re: Daratumumab (Darzalex) is working for me
Thelimeusa,
That's wonderful news!
There's also a elotuzumab + Pomalyst trial that is open. I wonder if it will be likely for specialists to recommend moving on to a different monoclonal antiboty-based regimen (such as elotuzumab) if one becomes refractory to a specific monoclonal antibody such as daratumumab?
You also wonder if one of the earlier drugs your wife is refractory to would now become efficacious with the addition of daratumumab?
That's wonderful news!
There's also a elotuzumab + Pomalyst trial that is open. I wonder if it will be likely for specialists to recommend moving on to a different monoclonal antiboty-based regimen (such as elotuzumab) if one becomes refractory to a specific monoclonal antibody such as daratumumab?
You also wonder if one of the earlier drugs your wife is refractory to would now become efficacious with the addition of daratumumab?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Daratumumab (Darzalex) is working for me
Thank you for the news, TheLime. I hope daratumumab works for a very long time.
Just and FYI, there are two monoclonal antibodies that I came across that are in clinical trials right now. (Where elotuzumab and daratumumab were about a year or two ago). So far, the category seems to be pretty active, so I hope the new ones continue the trend. One is atezolizumab, by Roche. I think the target is something called PD-L1. The other is pembrolizumab, which is already branded as Keytruda. This drug has already been approved for lung cancer, and other cancers. It works against PD-1. If your cancer expresses PD-1, then it appears to be very active. This one works as a checkpoint inhibitor, but I think its in the monoclonal antibody class as well. Keytruda is from Merck. Both of these companies are pushing these in clinical trials that are available in several sites across the country. As I mentioned, I hope the daratumumab works for a very long time.
Regards
Just and FYI, there are two monoclonal antibodies that I came across that are in clinical trials right now. (Where elotuzumab and daratumumab were about a year or two ago). So far, the category seems to be pretty active, so I hope the new ones continue the trend. One is atezolizumab, by Roche. I think the target is something called PD-L1. The other is pembrolizumab, which is already branded as Keytruda. This drug has already been approved for lung cancer, and other cancers. It works against PD-1. If your cancer expresses PD-1, then it appears to be very active. This one works as a checkpoint inhibitor, but I think its in the monoclonal antibody class as well. Keytruda is from Merck. Both of these companies are pushing these in clinical trials that are available in several sites across the country. As I mentioned, I hope the daratumumab works for a very long time.
Regards
-
JPC - Name: JPC
Re: Daratumumab (Darzalex) is working for me
I asked my local onc today if his office has any patients on MABs yet. He mentioned that there are two patients on daratumumab in his facility and that their injection reactions to daratumumab has been pretty rough. We only had a couple of minutes to chat in the hallway about this, but he said that one's lungs also contain quite a few cells with CD38 antigens (or something akin to that statement) and that daratumumab can therefore cause pulmonary problems in some patients. I was then talking to one of the oncology nurses and she said that the patient's reactions to the daratumumab were "quite challenging" and had the nursing staff on their toes when those two patients were getting their infusions.
I then read up on the side effects of daratumumab and came across this:
DARZALEX® (daratumumab) Important Safety Information – Professional
CONTRAINDICATIONS - None
WARNINGS AND PRECAUTIONS
Infusion Reactions - DARZALEX can cause severe infusion reactions. Approximately half of all patients experienced a reaction, most during the first infusion. Infusion reactions can also occur with subsequent infusions. Nearly all reactions occurred during infusion or within 4 hours of completing an infusion. Prior to the introduction of post-infusion medication in clinical trials, infusion reactions occurred up to 48 hours after infusion. Severe reactions have occurred, including bronchospasm, hypoxia, dyspnea, and hypertension. Signs and symptoms may include respiratory symptoms, such as cough, wheezing, larynx and throat tightness and irritation, laryngeal edema, pulmonary edema, nasal congestion, and allergic rhinitis. Less common symptoms were hypotension, headache, rash, urticaria, pruritus, nausea, vomiting, and chills.
Pre-medicate patients with antihistamines, antipyretics and corticosteroids. Frequently monitor patients during the entire infusion. Interrupt infusion for reactions of any severity and institute medical management as needed. Permanently discontinue therapy for life-threatening (Grade 4) reactions. For patients with Grade 1, 2, or 3 reactions, reduce the infusion rate when re-starting the infusion.
To reduce the risk of delayed infusion reactions, administer oral corticosteroids to all patients the first and second day after all infusions. Patients with a history of obstructive pulmonary disorders may require additional post-infusion medications to manage respiratory complications. Consider prescribing short- and long-acting bronchodilators and inhaled corticosteroids for patients with obstructive pulmonary disorders.
Just something to be aware of, especially if you are having any pulmonary difficulties going into treatment.
This information above is from the J&J press release announcing daratumumab's FDA approval:
"Darzalex (Daratumumab) Approved By U.S. FDA: First Human Anti-CD38 Monoclonal Antibody Available For The Treatment Of Multiple Myeloma," Johnson & Johnson press release, Nov 16, 2016
I then read up on the side effects of daratumumab and came across this:
DARZALEX® (daratumumab) Important Safety Information – Professional
CONTRAINDICATIONS - None
WARNINGS AND PRECAUTIONS
Infusion Reactions - DARZALEX can cause severe infusion reactions. Approximately half of all patients experienced a reaction, most during the first infusion. Infusion reactions can also occur with subsequent infusions. Nearly all reactions occurred during infusion or within 4 hours of completing an infusion. Prior to the introduction of post-infusion medication in clinical trials, infusion reactions occurred up to 48 hours after infusion. Severe reactions have occurred, including bronchospasm, hypoxia, dyspnea, and hypertension. Signs and symptoms may include respiratory symptoms, such as cough, wheezing, larynx and throat tightness and irritation, laryngeal edema, pulmonary edema, nasal congestion, and allergic rhinitis. Less common symptoms were hypotension, headache, rash, urticaria, pruritus, nausea, vomiting, and chills.
Pre-medicate patients with antihistamines, antipyretics and corticosteroids. Frequently monitor patients during the entire infusion. Interrupt infusion for reactions of any severity and institute medical management as needed. Permanently discontinue therapy for life-threatening (Grade 4) reactions. For patients with Grade 1, 2, or 3 reactions, reduce the infusion rate when re-starting the infusion.
To reduce the risk of delayed infusion reactions, administer oral corticosteroids to all patients the first and second day after all infusions. Patients with a history of obstructive pulmonary disorders may require additional post-infusion medications to manage respiratory complications. Consider prescribing short- and long-acting bronchodilators and inhaled corticosteroids for patients with obstructive pulmonary disorders.
Just something to be aware of, especially if you are having any pulmonary difficulties going into treatment.
This information above is from the J&J press release announcing daratumumab's FDA approval:
"Darzalex (Daratumumab) Approved By U.S. FDA: First Human Anti-CD38 Monoclonal Antibody Available For The Treatment Of Multiple Myeloma," Johnson & Johnson press release, Nov 16, 2016
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Daratumumab (Darzalex) is working for me
Hi Bulder,
I reported it last week. They seemed interested. Will advise any further follow up. Thanks,
Jack
I reported it last week. They seemed interested. Will advise any further follow up. Thanks,
Jack
-
Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Daratumumab (Darzalex) is working for me
My husband is IgA kappa with t(4:14). He was on trial with Revlimid, Velcade, and dexamethasone (RVD) and transplant with RVD consolidation after. Stem cell transplant was not successful. Since that, has been on Kyprolis, Pomalyst, Cytoxan, and now daratumumab.
The daratumumab seems to be working. Just finished 2nd cycle and numbers look pretty good.
But physically he is feeling the worst he has felt on any treatment. Hard to tell if the daratumumab or something else going on. Very short of breath and having pain in same spots he did when first diagnosed.
Anyone experiencing any of this?
Thank you
Laurie
The daratumumab seems to be working. Just finished 2nd cycle and numbers look pretty good.
But physically he is feeling the worst he has felt on any treatment. Hard to tell if the daratumumab or something else going on. Very short of breath and having pain in same spots he did when first diagnosed.
Anyone experiencing any of this?
Thank you
Laurie
-
lcasey2682 - Name: Laurie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 63
Re: Daratumumab (Darzalex) is working for me
Laurie,
Is your husband on all 4 drugs at the same time? If so, one of the more common side effects of Kyprolis is shortness of breath (dyspnea). I understand that one of the first things that they will try if it's getting to be a problem is to dial back the dose. If his numbers come in line, I would think that he could get to a maintenance dose.
Good luck
Is your husband on all 4 drugs at the same time? If so, one of the more common side effects of Kyprolis is shortness of breath (dyspnea). I understand that one of the first things that they will try if it's getting to be a problem is to dial back the dose. If his numbers come in line, I would think that he could get to a maintenance dose.
Good luck
-
JPC - Name: JPC
Re: Daratumumab (Darzalex) is working for me
Hi Mike,
I come from the UK and it looks like I may be starting on self-funded Darzalex (daratumumab) soon, having exhausted all other treatments. Are you still on it and how are things for you at present after the initial results that you posted?
I come from the UK and it looks like I may be starting on self-funded Darzalex (daratumumab) soon, having exhausted all other treatments. Are you still on it and how are things for you at present after the initial results that you posted?
29 posts
• Page 3 of 3 • 1, 2, 3
Return to Treatments & Side Effects