Hi Beaconers!
Wondering if anyone has any experience with selinexor (KPT-330) or can give an idea of what to expect when treated with the drug.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Selinexor for multiple myeloma - what to expect?
I'll go first! 
My mother is on a trial of selinexor and dexamethasone for quad-refractory myeloma.
Side effects: this has been a hard treatment. We were warned that the three major side effects are nausea, anorexia, and low platelets, and Mom has gotten to experience all of those.
Despite taking Kytril (granisetron), Compazine (prochlorperazine) and Ativan (lorazepam), the nausea has managed to break through. She will very suddenly feel the urge to vomit and then feel better after. Still, it is hard to want to do things like go to a friend's house for dinner when you are worried about that nausea.
Mom's appetite is gone, completely. She tries to force herself to eat, but it's hard. I'd say that in her first round, she took in only about 500 calories a day. Not enough.
As for platelets, at the start of treatment they were at 350. At the start of the third week of the first round of selinexor, they had dropped to 156. A week later, during the off week, they were down to 70. Mayo transfused her before the start of round 2, and they were at 40. As of Friday, they are at 20. She will start Nplate (romiplostim) to stimulate her platelets. Again, we were warned about this, but I am surprised they didn't come up during the week break.
Results? Mixed. Mom is IgA kappa. Her kappa light chains (normal 0.3 to 1.4) were 500 at the start of selinexor-dex. At the start of the third week, they were down to 400, and are now back to 500. Ugh. LDH was normal at the start of the third week and spiked up 100 points. As for IgA, I'm not sure, because it wasn't tested which seems odd. In early October it was about 2500. M-spike still remains at 2.9 g/dL (29 g/L).
However, the creatinine has taken a major spike to 4.1. The doctors think that is due to the drug (and there seems to be a bit of a disagreement between them and the pharmaceutical company about if it is excreted through the kidneys). Since this has happened with other patients, the protocol is to move to a half dose of selinexor. My hope is that it drops the creatinine and at least holds the other things steady.
If anyone else is on a selinexor trial, I'd love to hear your experiences.
My mother is on a trial of selinexor and dexamethasone for quad-refractory myeloma.
Side effects: this has been a hard treatment. We were warned that the three major side effects are nausea, anorexia, and low platelets, and Mom has gotten to experience all of those.
Despite taking Kytril (granisetron), Compazine (prochlorperazine) and Ativan (lorazepam), the nausea has managed to break through. She will very suddenly feel the urge to vomit and then feel better after. Still, it is hard to want to do things like go to a friend's house for dinner when you are worried about that nausea.
Mom's appetite is gone, completely. She tries to force herself to eat, but it's hard. I'd say that in her first round, she took in only about 500 calories a day. Not enough.
As for platelets, at the start of treatment they were at 350. At the start of the third week of the first round of selinexor, they had dropped to 156. A week later, during the off week, they were down to 70. Mayo transfused her before the start of round 2, and they were at 40. As of Friday, they are at 20. She will start Nplate (romiplostim) to stimulate her platelets. Again, we were warned about this, but I am surprised they didn't come up during the week break.
Results? Mixed. Mom is IgA kappa. Her kappa light chains (normal 0.3 to 1.4) were 500 at the start of selinexor-dex. At the start of the third week, they were down to 400, and are now back to 500. Ugh. LDH was normal at the start of the third week and spiked up 100 points. As for IgA, I'm not sure, because it wasn't tested which seems odd. In early October it was about 2500. M-spike still remains at 2.9 g/dL (29 g/L).
However, the creatinine has taken a major spike to 4.1. The doctors think that is due to the drug (and there seems to be a bit of a disagreement between them and the pharmaceutical company about if it is excreted through the kidneys). Since this has happened with other patients, the protocol is to move to a half dose of selinexor. My hope is that it drops the creatinine and at least holds the other things steady.
If anyone else is on a selinexor trial, I'd love to hear your experiences.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Selinexor for multiple myeloma - what to expect?
Thought I'd give an update. First off, I mis-spoke on the creatinine. It was up to 4.5. On Monday (11/30), it had fallen to 4.1. Hopefully it will keep going down. It appears the lower dose is helping. Mom is also receiving fluids twice a week and that is no doubt having an effect.
Another slightly bright spot is that her hemoglobin is up to 8. Still low, but it is an improvement.
The downside? Platelets fell AGAIN to 14 (from 21). I was under the impression Mom would be on Nplate (romiplostim), but her local oncologist's office did not see an order for it from her myeloma specialist.
Hopefully we can figure out what is going on there and see if she can either get on that medication or get another transfusion (although her last one didn't help much).
I'll keep the forum posted.
Another slightly bright spot is that her hemoglobin is up to 8. Still low, but it is an improvement.
The downside? Platelets fell AGAIN to 14 (from 21). I was under the impression Mom would be on Nplate (romiplostim), but her local oncologist's office did not see an order for it from her myeloma specialist.
Hopefully we can figure out what is going on there and see if she can either get on that medication or get another transfusion (although her last one didn't help much).
I'll keep the forum posted.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Selinexor for multiple myeloma - what to expect?
Selinexor is not working. The myeloma is on the edge of morphing into plasma cell leukemia. Mom will try daratumumab next as a monotherapy and if it looks like it is effective they can add in other drugs. I'm trying to be hopeful but I am realistic.
The good news is that dara doesn't seem to have the awful side effects of selinexor.
The good news is that dara doesn't seem to have the awful side effects of selinexor.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Selinexor for multiple myeloma - what to expect?
Hello, BeatMyeloma,
Before I read your last post, I was thinking daratumumab ("Dara"). Good luck with the Dara.
My only comment is that even though your Mom was refractory to other drugs, I have read that adding those other drugs back in, that they would work potentially better with Dara. Also, consider adding elo and panobinostat to the Dara.
Best of luck to you and your Mom.
JPC
Before I read your last post, I was thinking daratumumab ("Dara"). Good luck with the Dara.
My only comment is that even though your Mom was refractory to other drugs, I have read that adding those other drugs back in, that they would work potentially better with Dara. Also, consider adding elo and panobinostat to the Dara.
Best of luck to you and your Mom.
JPC
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JPC - Name: JPC
Re: Selinexor for multiple myeloma - what to expect?
Thanks, JPC! I've heard lots of great things about dara and am hoping it will do the trick, but I'm doubtful. Just hard to have hope when things have gone so badly for so long.
I have also heard that other drugs added in to dara can add to the effectiveness, but her doctor is starting just dara. I'm afraid I don't quite understand that. If this is a hail Mary pass, why not try to make it as effective as possible from the beginning?
I have also heard that other drugs added in to dara can add to the effectiveness, but her doctor is starting just dara. I'm afraid I don't quite understand that. If this is a hail Mary pass, why not try to make it as effective as possible from the beginning?
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Selinexor for multiple myeloma - what to expect?
Hi BeatMyeloma,
Mom my has been through hell with myeloma, just to be blunt. She has had several treatments, but daratumumab has been a gift from above. She has had no side effects, which is different from every other treatment, and the doctors can't figure out why she is responding so well. These are the same doctors who wanted to start palliative care over a year ago. The message is never give up hope.
The sad part is she is recovering from a surgery where a rod was placed in her femur to add support to the bone. This resulted from month's of the same treatment of Kyprolis after she had stopped responding. With help from daratumumab, she is fighting her way back once again.
Hope this helps.
Lisa
Mom my has been through hell with myeloma, just to be blunt. She has had several treatments, but daratumumab has been a gift from above. She has had no side effects, which is different from every other treatment, and the doctors can't figure out why she is responding so well. These are the same doctors who wanted to start palliative care over a year ago. The message is never give up hope.
The sad part is she is recovering from a surgery where a rod was placed in her femur to add support to the bone. This resulted from month's of the same treatment of Kyprolis after she had stopped responding. With help from daratumumab, she is fighting her way back once again.
Hope this helps.
Lisa
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lbbiddy - Name: Lisa Biddy
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2013
- Age at diagnosis: 80
Re: Selinexor for multiple myeloma - what to expect?
I'm glad to hear daratumumab is working for your mother! Unfortunately, my mom passed away the very day she was supposed to begin daratumumab. When myeloma makes a sudden morph into plasma cell leukemia, it's darn near impossible to stop. But it's great to hear it is working for others!
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
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