I was diagnosed with multiple myeloma about 5 years ago when my clavicle broke at age 58. I was treated with Velcade and dex, then a stem cell transplant with Revlimid maintenance. Relapsed at 30 months. Developed plasmacytomas.
Then tried 3 different clinical trial drugs. One shrunk the plasmacytomas before it stopped working.
Did a salvage stem cell transplant. Bone marrow biopsy before transplant showed 15% malignant cells. 99 day bone marrow biopsy showed 70% malignant cells. IgA 58 before transplant, now 2902, LDH 213 to 967.
Have had 4 treatments with clinical trial drug SAR650984 (isatuximab). My local oncologist says switch to daratumumab (Darzalex) with dexamethasone and Revlimid. (Also had CT of the abdomen with contrast. All organs are normal.)
No trouble tolerating SAR650984 other than fatigue and increase bone pain. Will know more when they do all tests next week.
If SAR650984 is not working, is there a chance that doing the daratumumab with dex and Revlimid would work? If the SAR650984 is working, would it still be better to switch to the daratumumab with dex and Revlimid?
From what I can understand, both drugs work on the CD 38 protein, but it seems like the daratumumab with the the added agents make it work better.
I can't even seem to find the difference since SAR650984 also works on the CD 38 protein. What is the difference in these two drugs?
It is very confusing, with the local oncologist saying use the daratumumab, and the doctor doing the clinical trial saying stay with the SAR650984.
Has anyone out there tried these drugs or had this problem with two doctors saying different things?
I realize if I go off trial, I wouldn't be able to use SAR650984 again until approved, but other than infusion time and daratumumab having more infusion reactions, I don't understand the difference in these drugs.
Would appreciate any help as making the wrong decision with things looking pretty dire could make a big difference. The nearest university other than the one doing the trial is over 300 miles, making it expensive. We are already driving over 200 miles to go to the one doing the trial. My husband is 91, so is hard on him also, never mind the expense.
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Re: SAR650984 (isatuximab) versus daratumumab
This is not an easy answer. As you say, both of the drugs work on the CD38 protein, but in different ways. It sounds like the SAR650984 is being administered as a standalone, but I am not sure from your post. The daratumumab is to be combined with dex and Revlimid. Some very good results have been obtained with that combination in earlier clinical trials.
I would be inclined to stick with the clinical trail with SAR650984 and, if it does not work, then switch over to Darzalex. SAR650984 is not approved yet but likely will be. It has had some very good results in prior clinical trials. Keep in mind that when it is given in a clinical trial the drug is at no cost to you. That is a side issue, as I am sure your main concern is finding a treatment that works.
Insofar as the difference between the drugs, I am not an expert. All I can say is that they target the same protein but come at it differently. An analogy would be Velcade, Kyprolis and the new drug Ninlaro (ixazomib), which are all proteasome inhibitors, but come at it differently. Some people that become refractory to Velcade can use Kyprolis and get good results, and vice versa.
I would be inclined to stick with the clinical trail with SAR650984 and, if it does not work, then switch over to Darzalex. SAR650984 is not approved yet but likely will be. It has had some very good results in prior clinical trials. Keep in mind that when it is given in a clinical trial the drug is at no cost to you. That is a side issue, as I am sure your main concern is finding a treatment that works.
Insofar as the difference between the drugs, I am not an expert. All I can say is that they target the same protein but come at it differently. An analogy would be Velcade, Kyprolis and the new drug Ninlaro (ixazomib), which are all proteasome inhibitors, but come at it differently. Some people that become refractory to Velcade can use Kyprolis and get good results, and vice versa.
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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
Re: SAR650984 (isatuximab) versus daratumumab
Welcome to the forum.
You mention that you "tried 3 different clinical trial drugs. One shrunk the plasmacytomas before it stopped working."
What clinical trial drugs did you try, and what sort of experience did you have with them?
You mention that you "tried 3 different clinical trial drugs. One shrunk the plasmacytomas before it stopped working."
What clinical trial drugs did you try, and what sort of experience did you have with them?
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Jonah
Re: SAR650984 (isatuximab) versus daratumumab
Thanks for your replies. The medical professionals got back with me on any differences between daratumumab and SAR650984. They said there are no known significant biological advantages between the agents. However there are some practical differences. The rates of infusions reactions appear to be higher with daratumumab and the infusion time to admission daratumumab is also significantly longer.
The clinical trial drug we tried that did get rid of many of the plasmacytomas and shrank the rest was ibrutinib. I had to withdraw from the trial because although it was working on the plasmacytomas, after 3 or 4 months my counts were going up. I am sorry, don't remember the other drug names and haven't kept all the paper work. They all worked for 3 to 5 months and then my counts would start climbing again.
I have tried all the FDA approved drugs other than Pomalyst and the daratumumab so am hopeful that the daratumumab combined with dex and Revlimid will give me a little more time.
I think I will go with the combination as the info I have been able to find showed the addition of those two drugs does increase the chance that they will work, and yes the trial with SAR650984 is a single agent trial. I feel bad about dropping out of the trial as any info they can gain can hopefully help others; and even though the previous clinical trial drugs only worked for a couple of months, those months were precious. And they all had very tolerable side effects. Hopefully will be able to take part in other trials in the future.
Keep smiling and fighting out there!
The clinical trial drug we tried that did get rid of many of the plasmacytomas and shrank the rest was ibrutinib. I had to withdraw from the trial because although it was working on the plasmacytomas, after 3 or 4 months my counts were going up. I am sorry, don't remember the other drug names and haven't kept all the paper work. They all worked for 3 to 5 months and then my counts would start climbing again.
I have tried all the FDA approved drugs other than Pomalyst and the daratumumab so am hopeful that the daratumumab combined with dex and Revlimid will give me a little more time.
I think I will go with the combination as the info I have been able to find showed the addition of those two drugs does increase the chance that they will work, and yes the trial with SAR650984 is a single agent trial. I feel bad about dropping out of the trial as any info they can gain can hopefully help others; and even though the previous clinical trial drugs only worked for a couple of months, those months were precious. And they all had very tolerable side effects. Hopefully will be able to take part in other trials in the future.
Keep smiling and fighting out there!
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