@knikriverstudios. Welcome to Mayo Connect. Reading your bio you mentioned having both MM (multiple myeloma and PCL (plasma cell leukemia). They are related in that they are both cancers of the plasma cells but MM, generally the cells remain in the bone marrow. With PCL, the abnormal cells are in circulation in your blood stream as well.
How have you been doing with your treatments? Are you responding well? What medication are you receiving?
@pmm
Hi
I have Plasma Cell Lewkemia.
I’m in treatment .5th cycle
Do you think I should tell my siblings ?
Is it possible they our ther children could get it ?
Thank you
@pmm
Hi
I have Plasma Cell Lewkemia.
I’m in treatment .5th cycle
Do you think I should tell my siblings ?
Is it possible they our ther children could get it ?
Thank you
@knikriverstudios hi there. I am no expert on that particular blood disorder, but I wanted to respond about talking to your siblings. I always try and put myself in the shoes of my family when I consider what and when to tell them about my health concerns. For me, I’d want to know so I can provide some support to my family if they are struggling. That and I would want to be aware of serious health concerns so that I can adjust to the “new normal” for my family.
You are the expert on your family, but those are my thoughts about it, being completely ignorant about your family dynamics.
My very best to you as you make this weighty decision. I’d like to know how it goes for you if you don’t mind sharing.
Patty
@pmm
Hi
I have Plasma Cell Lewkemia.
I’m in treatment .5th cycle
Do you think I should tell my siblings ?
Is it possible they our ther children could get it ?
Thank you
Plasma cell leukemia is caused by acquired genetic changes during plasma cell development. This means as plasma cells grow and multiply genetic changes take place. Plasma cell leukemia isn't directly inherited like a genetic trait. You might speak with your oncologist about the risk of siblings or children developing PCL and if genetic testing is advised.
I have plasma cell leukemia, it transitioned from multiple myeloma. I was near death last Oct and traditional chemo didn't work. It even permanently affected my hearing! Teclistamab injections-a different cancer fighting drug, saved my life. I would ask the doctor about it. It may only add a year to my life because this cancer is mean. But I'll take one more year. I still have Rib Bones breaking and other mildish cancer symptoms, but I am feeling good. Best to you and your family! Abby
I have plasma cell leukemia, it transitioned from multiple myeloma. I was near death last Oct and traditional chemo didn't work. It even permanently affected my hearing! Teclistamab injections-a different cancer fighting drug, saved my life. I would ask the doctor about it. It may only add a year to my life because this cancer is mean. But I'll take one more year. I still have Rib Bones breaking and other mildish cancer symptoms, but I am feeling good. Best to you and your family! Abby
Welcome, @abby5. I'm tagging @knikriverstudios@19lesterk@krismikkalson, who also have experience with plasma cell leukemia. Given that it is a rare diagnosis, I wanted to make sure that you all connected to support one another.
Abby, thank goodness that teclistamab (Tecvayli) worked after chemo didn't. Are you still on teclistamab as a maintenance treatment? How are you doing?
I have plasma cell leukemia, it transitioned from multiple myeloma. I was near death last Oct and traditional chemo didn't work. It even permanently affected my hearing! Teclistamab injections-a different cancer fighting drug, saved my life. I would ask the doctor about it. It may only add a year to my life because this cancer is mean. But I'll take one more year. I still have Rib Bones breaking and other mildish cancer symptoms, but I am feeling good. Best to you and your family! Abby
@abby5 My dad has PCL as well and his doctor had mentioned potentially trying teclistamab if his counts go up too high before his CAR-T cell therapy. Have you noticed any side effects while on it? I wish the best for you and your family, I know this diagnosis can be very daunting and difficult to navigate.
I am doing well. I've been on weekly injections since starting it. One more month and then I will start getting the injection every 2 weeks. My doctor's plan is to keep me on the Teclistamab until it doesn't work any longer. I was told the drug lasts on the avg of 10 mos with my type of cancer. There are no specific plans in place but perhaps a clinical trial or try different meds when that time comes.
@abby5 My dad has PCL as well and his doctor had mentioned potentially trying teclistamab if his counts go up too high before his CAR-T cell therapy. Have you noticed any side effects while on it? I wish the best for you and your family, I know this diagnosis can be very daunting and difficult to navigate.
@19lesterk, I did have some serious muscle spasms when they initially ramped the dosage up during the first week. But I have a lot of back issues to begin with. They continue to check my neuro function at each injection. The BIG negative is that it affected my t-cells. I was all ready for CAR-T but my t-cells could not be modified. My doc knew it could be an issue but I just don't think he realized how quickly it would happen. So that would be my word of caution I guess. If your dad has to go on it, hopefully it doesn't affect the car-t process.
Connect
Connect
Like
Helpful
Hug
@loribmt
Yes you are correct.
I have PpCL a sub type of Mm
Treatment is CyborD.
Was medicated from Anchorage to Fred Hutchinson in May.
-
Like -
Helpful -
Hug
1 Reaction@pmm
Hi
I have Plasma Cell Lewkemia.
I’m in treatment .5th cycle
Do you think I should tell my siblings ?
Is it possible they our ther children could get it ?
Thank you
-
Like -
Helpful -
Hug
1 Reaction@knikriverstudios hi there. I am no expert on that particular blood disorder, but I wanted to respond about talking to your siblings. I always try and put myself in the shoes of my family when I consider what and when to tell them about my health concerns. For me, I’d want to know so I can provide some support to my family if they are struggling. That and I would want to be aware of serious health concerns so that I can adjust to the “new normal” for my family.
You are the expert on your family, but those are my thoughts about it, being completely ignorant about your family dynamics.
My very best to you as you make this weighty decision. I’d like to know how it goes for you if you don’t mind sharing.
Patty
-
Like -
Helpful -
Hug
1 Reaction@knikriverstudios, I moved your question telling your siblings to this discussion on plasma cell leukemia:
- Anyone with Plasma Cell Leukemia or family?https://connect.mayoclinic.org/discussion/plasma-cell-leukemia/
Plasma cell leukemia is caused by acquired genetic changes during plasma cell development. This means as plasma cells grow and multiply genetic changes take place. Plasma cell leukemia isn't directly inherited like a genetic trait. You might speak with your oncologist about the risk of siblings or children developing PCL and if genetic testing is advised.
Yes
I have Plasma cell Leukemia
I’ve been in Chemo for 25 weeks .
Would like to talk about your
condition .
I have plasma cell leukemia, it transitioned from multiple myeloma. I was near death last Oct and traditional chemo didn't work. It even permanently affected my hearing! Teclistamab injections-a different cancer fighting drug, saved my life. I would ask the doctor about it. It may only add a year to my life because this cancer is mean. But I'll take one more year. I still have Rib Bones breaking and other mildish cancer symptoms, but I am feeling good. Best to you and your family! Abby
-
Like -
Helpful -
Hug
4 ReactionsWelcome, @abby5. I'm tagging @knikriverstudios @19lesterk @krismikkalson, who also have experience with plasma cell leukemia. Given that it is a rare diagnosis, I wanted to make sure that you all connected to support one another.
Abby, thank goodness that teclistamab (Tecvayli) worked after chemo didn't. Are you still on teclistamab as a maintenance treatment? How are you doing?
@abby5 My dad has PCL as well and his doctor had mentioned potentially trying teclistamab if his counts go up too high before his CAR-T cell therapy. Have you noticed any side effects while on it? I wish the best for you and your family, I know this diagnosis can be very daunting and difficult to navigate.
-
Like -
Helpful -
Hug
1 Reaction@colleenyoung
I am doing well. I've been on weekly injections since starting it. One more month and then I will start getting the injection every 2 weeks. My doctor's plan is to keep me on the Teclistamab until it doesn't work any longer. I was told the drug lasts on the avg of 10 mos with my type of cancer. There are no specific plans in place but perhaps a clinical trial or try different meds when that time comes.
-
Like -
Helpful -
Hug
4 Reactions@19lesterk, I did have some serious muscle spasms when they initially ramped the dosage up during the first week. But I have a lot of back issues to begin with. They continue to check my neuro function at each injection. The BIG negative is that it affected my t-cells. I was all ready for CAR-T but my t-cells could not be modified. My doc knew it could be an issue but I just don't think he realized how quickly it would happen. So that would be my word of caution I guess. If your dad has to go on it, hopefully it doesn't affect the car-t process.