As Lori, @loribmt, said your family is experiencing a lot of health issues right now and it must be stressful for all of you. You mentioned that your mom was recently diagnosed with Parkinson's. If you would like to get some support for your mom's PD, I would encourage you to take a look at our PD support group on Connect. I am the mentor of this group and you might benefit from the members who post. Here is a link to the discussion,
--Living With Parkinson's Meet Others.. https://connect.mayoclinic.org/discussion/living-with-parkinsons-disease-meet-others-come-say-hi/
Has your mom started taking medications for her PD?
and yes my mom is taking her meds for PD. we just had a neuro appt earlier this month and have determined right now that meds and PT are helping and the doc is fine keeping her on them for now. she's still in the early stages of PD as well but my sister and i both can see a difference.
i believe i'm following that group but haven't had a chance to say hi. By chance is there a way this can be viewed etc from outside the clinc walls? external site etc that i can put my mom onto as well. i log in via work since i'm an employee but i know my mom is having a hard time with her diagnosis and could use support especially since she's my dad's primary care giver. my dad struggles to let us "girls" help him and admit to us anything is wrong, but thankfully my mom is more open to help and allowing my sister and i to go with to appointments etc and stay informed on her care at least.
thank you so much for reaching out. these forums have been such a blessing.
@krismikkalson
I'm glad to hear that your mom is open to getting support. If your mom can access a computer/laptop/iPad or Smartphone. You could help her set up her own Mayo Clinic account and she can post messages and read messages on her own.
Do you think that is possible?
Hi! My dad unfortunately was just diagnosed with Plasma Cell Leukemia. I've come to find that this is an extremely rare diagnosis, so naturally I have a lot of questions that I'm not sure can really be answered. My dad is only 44, so I just want to make sure he can get the absolute best care possible. I'm trying to research the best providers for this type of cancer, but I'm not really finding any that specialize in PCL. Is it safe to assume that doctors who specialize in Multiple Myeloma also have experience with PCL since they are related cancers? How can I get him transferred to receive care at Mayo Clinic if that's ultimately what my family decides is best? He's been admitted to the hospital for over a week now, and we haven't made much progress on getting him established with an oncologist to receive chemotherapy. There are so many unknowns right now, and I'm not happy with the level of communication from the hospital he is at in Nevada. The oncologist that is on my dad's care team has told our family he's had patients become "cured" of MM and "doing very well" with PCL. All of my research suggests that he is not being very truthful or transparent with my family about my dad's prognosis. We're very unsure of next steps. We don't know if he's going to be receiving a stem cell transplant, we don't know what chemotherapy regimen he will be started on, and we haven't gotten a good answer on what his prognosis might be. Does anyone have any insight on any of this?
Hi! My dad unfortunately was just diagnosed with Plasma Cell Leukemia. I've come to find that this is an extremely rare diagnosis, so naturally I have a lot of questions that I'm not sure can really be answered. My dad is only 44, so I just want to make sure he can get the absolute best care possible. I'm trying to research the best providers for this type of cancer, but I'm not really finding any that specialize in PCL. Is it safe to assume that doctors who specialize in Multiple Myeloma also have experience with PCL since they are related cancers? How can I get him transferred to receive care at Mayo Clinic if that's ultimately what my family decides is best? He's been admitted to the hospital for over a week now, and we haven't made much progress on getting him established with an oncologist to receive chemotherapy. There are so many unknowns right now, and I'm not happy with the level of communication from the hospital he is at in Nevada. The oncologist that is on my dad's care team has told our family he's had patients become "cured" of MM and "doing very well" with PCL. All of my research suggests that he is not being very truthful or transparent with my family about my dad's prognosis. We're very unsure of next steps. We don't know if he's going to be receiving a stem cell transplant, we don't know what chemotherapy regimen he will be started on, and we haven't gotten a good answer on what his prognosis might be. Does anyone have any insight on any of this?
I did this so that you can read previous posts and connect with @krismikkalson whose dad was also diagnosed with PCL
You're right that plasma cell leukemia treatments include the same ones that are used in multiple myeloma. Each person is different, so your dad's team might recommend one type of treatment or a combination. The options may include:
- Autologous stem cell transplant
- Chemotherapy
- Immunotherapy
- Targeted therapy
Has a treatment plan been discussed and decided upon? How are you doing?
@19lesterk I am so sorry to hear about your dad's diagnosis. My dad passed away and lost his battle with cancer just over 2 weeks ago. First off, PCL is a blood cancer, and you'll want to find a good Hematologist. They're an oncologist for cancers that aren't masses/solid. I also understand your frustration concerning reading and researching vrs what you're being told. My dad's PCL was "put to sleep" (with blood/liquid cancers, they don't technically go into remission), but the kappa light chain proteins and other things that are in the blood instead of in the bone marrow, where they're supposed to be can go back down to normal levels and no longer be found in the blood stream. My dad's treatment was subcutaneous chemo injections and some bone-strengthening infusions. My dad was 1st diagnosed with PCL in September of 2023, and by June 2024, it was "asleep" (yes, that's the medical term the doctor used), but his cancer came back in October 2024. This time it was multiple myeloma, and while his numbers were rising, they "weren't rising fast enough to treat, and he was stable." I'm happy to share my experience. My dad broke bones by simply grabbing a glass of water, his bones were so weak in the few months. Also, if you don't like what the doctors are telling you and you think they're blowing smoke and placating you, TELL THEM THAT!!! I've found that until it's close to the end, a lot of doctors are afraid to tell families the hard truths for fear the families will sue etc. They want to give hope. but sometimes what families need, along with hope, is reality, worst case. Hope for the best, plan for the worst, and anything in between is gravy.
@krismikkalson
I'm glad to hear that your mom is open to getting support. If your mom can access a computer/laptop/iPad or Smartphone. You could help her set up her own Mayo Clinic account and she can post messages and read messages on her own.
Do you think that is possible?
My dad lost his battle with cancer 5-17-2. we were able to grant his final two wishes and he passed at home and he was able to donate his body to Mayo for science and education.
I did this so that you can read previous posts and connect with @krismikkalson whose dad was also diagnosed with PCL
You're right that plasma cell leukemia treatments include the same ones that are used in multiple myeloma. Each person is different, so your dad's team might recommend one type of treatment or a combination. The options may include:
- Autologous stem cell transplant
- Chemotherapy
- Immunotherapy
- Targeted therapy
Has a treatment plan been discussed and decided upon? How are you doing?
Hi Colleen! Thank you so much for doing that. I'm feeling better now about my dad's treatment plan. Tonight will start day 11 of his first cycle of chemotherapy, so I'm very glad they are finally getting him treatment. The goal is an autologous stem cell transplant and maintenance therapy following that to hopefully keep it in remission. I'm doing okay, all things considered. Definitely feeling scared, worried, and uncertain about the future, but that is just the nature of the disease. Thank you for checking in!
@19lesterk I am so sorry to hear about your dad's diagnosis. My dad passed away and lost his battle with cancer just over 2 weeks ago. First off, PCL is a blood cancer, and you'll want to find a good Hematologist. They're an oncologist for cancers that aren't masses/solid. I also understand your frustration concerning reading and researching vrs what you're being told. My dad's PCL was "put to sleep" (with blood/liquid cancers, they don't technically go into remission), but the kappa light chain proteins and other things that are in the blood instead of in the bone marrow, where they're supposed to be can go back down to normal levels and no longer be found in the blood stream. My dad's treatment was subcutaneous chemo injections and some bone-strengthening infusions. My dad was 1st diagnosed with PCL in September of 2023, and by June 2024, it was "asleep" (yes, that's the medical term the doctor used), but his cancer came back in October 2024. This time it was multiple myeloma, and while his numbers were rising, they "weren't rising fast enough to treat, and he was stable." I'm happy to share my experience. My dad broke bones by simply grabbing a glass of water, his bones were so weak in the few months. Also, if you don't like what the doctors are telling you and you think they're blowing smoke and placating you, TELL THEM THAT!!! I've found that until it's close to the end, a lot of doctors are afraid to tell families the hard truths for fear the families will sue etc. They want to give hope. but sometimes what families need, along with hope, is reality, worst case. Hope for the best, plan for the worst, and anything in between is gravy.
I am so sorry to hear about your dad's passing. You and your family are in my thoughts and prayers, and I hope you are all able to heal together. My dad had fractured two vertebrae and a rib, which led him to the emergency room and ultimately got us this diagnosis. They did a kyphoplasty to repair the fractures in his spine, which seems to be helping with the pain. They have started him on an induction chemo regimen called Cy-Bor-d which he is receiving inpatient at the hospital for at least 21 days. After that, they are switching him to a new outpatient regimen called dara-KRd. After about 3 cycles, we are going to try for an autologous stem cell transplant. Did the doctors at Mayo do this for your dad? Or did they ever mention the potential of trying investigational meds through clinical trials? Thank you for your sharing your experience and advice with me!
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and yes my mom is taking her meds for PD. we just had a neuro appt earlier this month and have determined right now that meds and PT are helping and the doc is fine keeping her on them for now. she's still in the early stages of PD as well but my sister and i both can see a difference.
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1 Reaction@krismikkalson
I'm glad to hear that your mom is open to getting support. If your mom can access a computer/laptop/iPad or Smartphone. You could help her set up her own Mayo Clinic account and she can post messages and read messages on her own.
Do you think that is possible?
-
Like -
Helpful -
Hug
1 ReactionHi! My dad unfortunately was just diagnosed with Plasma Cell Leukemia. I've come to find that this is an extremely rare diagnosis, so naturally I have a lot of questions that I'm not sure can really be answered. My dad is only 44, so I just want to make sure he can get the absolute best care possible. I'm trying to research the best providers for this type of cancer, but I'm not really finding any that specialize in PCL. Is it safe to assume that doctors who specialize in Multiple Myeloma also have experience with PCL since they are related cancers? How can I get him transferred to receive care at Mayo Clinic if that's ultimately what my family decides is best? He's been admitted to the hospital for over a week now, and we haven't made much progress on getting him established with an oncologist to receive chemotherapy. There are so many unknowns right now, and I'm not happy with the level of communication from the hospital he is at in Nevada. The oncologist that is on my dad's care team has told our family he's had patients become "cured" of MM and "doing very well" with PCL. All of my research suggests that he is not being very truthful or transparent with my family about my dad's prognosis. We're very unsure of next steps. We don't know if he's going to be receiving a stem cell transplant, we don't know what chemotherapy regimen he will be started on, and we haven't gotten a good answer on what his prognosis might be. Does anyone have any insight on any of this?
@19lesterk, I moved your question about plasma cell leukemia to this existing discussion of the same name:
- Plasma Cell Leukemia https://connect.mayoclinic.org/discussion/plasma-cell-leukemia/
I did this so that you can read previous posts and connect with @krismikkalson whose dad was also diagnosed with PCL
You're right that plasma cell leukemia treatments include the same ones that are used in multiple myeloma. Each person is different, so your dad's team might recommend one type of treatment or a combination. The options may include:
- Autologous stem cell transplant
- Chemotherapy
- Immunotherapy
- Targeted therapy
Has a treatment plan been discussed and decided upon? How are you doing?
@19lesterk I am so sorry to hear about your dad's diagnosis. My dad passed away and lost his battle with cancer just over 2 weeks ago. First off, PCL is a blood cancer, and you'll want to find a good Hematologist. They're an oncologist for cancers that aren't masses/solid. I also understand your frustration concerning reading and researching vrs what you're being told. My dad's PCL was "put to sleep" (with blood/liquid cancers, they don't technically go into remission), but the kappa light chain proteins and other things that are in the blood instead of in the bone marrow, where they're supposed to be can go back down to normal levels and no longer be found in the blood stream. My dad's treatment was subcutaneous chemo injections and some bone-strengthening infusions. My dad was 1st diagnosed with PCL in September of 2023, and by June 2024, it was "asleep" (yes, that's the medical term the doctor used), but his cancer came back in October 2024. This time it was multiple myeloma, and while his numbers were rising, they "weren't rising fast enough to treat, and he was stable." I'm happy to share my experience. My dad broke bones by simply grabbing a glass of water, his bones were so weak in the few months. Also, if you don't like what the doctors are telling you and you think they're blowing smoke and placating you, TELL THEM THAT!!! I've found that until it's close to the end, a lot of doctors are afraid to tell families the hard truths for fear the families will sue etc. They want to give hope. but sometimes what families need, along with hope, is reality, worst case. Hope for the best, plan for the worst, and anything in between is gravy.
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Like -
Helpful -
Hug
2 ReactionsMy dad lost his battle with cancer 5-17-2. we were able to grant his final two wishes and he passed at home and he was able to donate his body to Mayo for science and education.
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Like -
Helpful -
Hug
4 ReactionsHi Colleen! Thank you so much for doing that. I'm feeling better now about my dad's treatment plan. Tonight will start day 11 of his first cycle of chemotherapy, so I'm very glad they are finally getting him treatment. The goal is an autologous stem cell transplant and maintenance therapy following that to hopefully keep it in remission. I'm doing okay, all things considered. Definitely feeling scared, worried, and uncertain about the future, but that is just the nature of the disease. Thank you for checking in!
-
Like -
Helpful -
Hug
1 ReactionI am so sorry to hear about your dad's passing. You and your family are in my thoughts and prayers, and I hope you are all able to heal together. My dad had fractured two vertebrae and a rib, which led him to the emergency room and ultimately got us this diagnosis. They did a kyphoplasty to repair the fractures in his spine, which seems to be helping with the pain. They have started him on an induction chemo regimen called Cy-Bor-d which he is receiving inpatient at the hospital for at least 21 days. After that, they are switching him to a new outpatient regimen called dara-KRd. After about 3 cycles, we are going to try for an autologous stem cell transplant. Did the doctors at Mayo do this for your dad? Or did they ever mention the potential of trying investigational meds through clinical trials? Thank you for your sharing your experience and advice with me!