Hi @krismikkalson. Welcome to Connect. Plasma Cell Leukemia looks to be a bit of a rare bird. It’s part of the multiple myeloma family but differs in that higher numbers of abnormal plasma cells are circulating in the blood stream and not isolated to the bone marrow as in traditional MM.
While you’re waiting for other members to share their experiences with PCL, what has your doctor suggested as treatment? What were your symptoms leading up to the diagnosis?
I don't have it, my dad does. It went to sleep for a few months but it's back. He's continuing to break bones at an alarming rate and ease. But the doctor isn't concerned. Without violating my dad's privacy i'm curious at what point the doctor does become concerned and what to expect in later stages of this disease.
I don't have it, my dad does. It went to sleep for a few months but it's back. He's continuing to break bones at an alarming rate and ease. But the doctor isn't concerned. Without violating my dad's privacy i'm curious at what point the doctor does become concerned and what to expect in later stages of this disease.
Quite frankly, Kris, the doctor should be concerned now! If I were you, I’d really urge dad to consider having a 2nd opinion and a larger teaching/research hospital like Mayo Clinic, Cleveland Clinic, John Hopkins, or any of the larger university facilities across the US.
From my understanding PCL is quite rare and he’ll have a deeper bench of specialists who may have more information and treatment options for him!
If interested, here’s a link to Mayo Clinic to initiate a request for appointment. http://mayocl.in/1mtmR63
Your dad needs a hematologist oncologist that has experience with this form of leukemia. Was he offered any type of treatment? Has he had a bone marrow biopsy?
Quite frankly, Kris, the doctor should be concerned now! If I were you, I’d really urge dad to consider having a 2nd opinion and a larger teaching/research hospital like Mayo Clinic, Cleveland Clinic, John Hopkins, or any of the larger university facilities across the US.
From my understanding PCL is quite rare and he’ll have a deeper bench of specialists who may have more information and treatment options for him!
If interested, here’s a link to Mayo Clinic to initiate a request for appointment. http://mayocl.in/1mtmR63
Your dad needs a hematologist oncologist that has experience with this form of leukemia. Was he offered any type of treatment? Has he had a bone marrow biopsy?
my dad is receiving care at Mayo Clinic. he went through a round of subq chemo infusions for about 7-8 months. then as his hemotologist here said. it went to sleep. it came back in November. his monthly bloodwork since has shown that things are growing, this month faster than last month. he's has biopsys scans etc. Since it's incurable and the last round of treatment damn near killed him, he's reluctant to go through treatment since when asked the doctors have failed to give him any kind of answers when he's asked how long does treatment buy him vrs how long he has with no treatment.
my dad is receiving care at Mayo Clinic. he went through a round of subq chemo infusions for about 7-8 months. then as his hemotologist here said. it went to sleep. it came back in November. his monthly bloodwork since has shown that things are growing, this month faster than last month. he's has biopsys scans etc. Since it's incurable and the last round of treatment damn near killed him, he's reluctant to go through treatment since when asked the doctors have failed to give him any kind of answers when he's asked how long does treatment buy him vrs how long he has with no treatment.
I didn’t realize your dad was already a patient at Mayo. From personal experience, I know the specialists in the hematology department do their utmost to find successful treatments for their patients.
It sounds like your dad was in remission for a while and now the plasma cell leukemia is active again. Unfortunately, even with medications, there can come a time with blood cancers like your dad’s where treatments are no longer effective.
When that happens doctors are reluctant to give time estimates for longevity because it is difficult to predict with a rare disease.
As the cancerous blood cells continue to proliferate in the bone marrow and blood stream, eventually they will crowd out healthy blood cells. This disease is related to multiple myeloma which can cause bone pain, thinning bones and broken bones. With the relapse of his disease there simply may no longer be any options available for treatment. With subsequent blood work, where his doctor can compare one month to the next, they may be able to track rate of progression and give a more definitive answer.
I don’t blame your dad for not being eager to try another round of chemo. Have you spoken with his doctor’s NP or Nurse Coordinator about palliative care for your dad. This is not hospice. I found a good article about palliative care for MM patients. https://www.webmd.com/cancer/multiple-myeloma/palliative-care-multiple-myeloma
How is your dad feeling? Is he fatigued or experiencing any pain or discomfort?
He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay he finally qualified for the Homebound program (which I've tried to look up and all I found out is a nurse coordinates care so the patient doesn't have to come into Mayo as much). That nurse (Brenda) as of this morning prescribed him something stronger than a lidocaine patch and Aleve for his broken rib pain. He's been in palliative care since his 1st round of chemo. I understand with this disease it's a matter of time. We can't beat it, and it doesn't go away. All we want to know is what to expect. how does this disease progress? We know it's going to kill him but is it going to be constant pain from broken bones or something else? Articles I've found online talk about kidney failure. My dad asked his hematologist at Mayo last week, what kind of timeline he can expect with treatment and what kind of timeline without. He didn't get any useable answer. Articles say without treatment 6-12 months. What will those months look like? What can my mom (who recently got diagnosed with early Parkinsons expect) my dad doesn't want to "worry" my sister and me so getting information from him and my mom is hard. Add his dementia to the mix and it's been a very hard year. Currently my dad gets bloodwork done monthly to monitor plasma levels in his blood. Levels have been rising the last two months and this month rose faster than last month. But the, " Hemotologist isn't concerned yet." I really want to email his dr and ask at what point will they be concerned? how much worse is it going to get when reaching across his body for a drink breaks a rib and isn't concerning to the dr. i appreciate you taking the time to respond. i understand you're a volunteer and just helping. i'm frustrated and helpless. thank you for listening
He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay he finally qualified for the Homebound program (which I've tried to look up and all I found out is a nurse coordinates care so the patient doesn't have to come into Mayo as much). That nurse (Brenda) as of this morning prescribed him something stronger than a lidocaine patch and Aleve for his broken rib pain. He's been in palliative care since his 1st round of chemo. I understand with this disease it's a matter of time. We can't beat it, and it doesn't go away. All we want to know is what to expect. how does this disease progress? We know it's going to kill him but is it going to be constant pain from broken bones or something else? Articles I've found online talk about kidney failure. My dad asked his hematologist at Mayo last week, what kind of timeline he can expect with treatment and what kind of timeline without. He didn't get any useable answer. Articles say without treatment 6-12 months. What will those months look like? What can my mom (who recently got diagnosed with early Parkinsons expect) my dad doesn't want to "worry" my sister and me so getting information from him and my mom is hard. Add his dementia to the mix and it's been a very hard year. Currently my dad gets bloodwork done monthly to monitor plasma levels in his blood. Levels have been rising the last two months and this month rose faster than last month. But the, " Hemotologist isn't concerned yet." I really want to email his dr and ask at what point will they be concerned? how much worse is it going to get when reaching across his body for a drink breaks a rib and isn't concerning to the dr. i appreciate you taking the time to respond. i understand you're a volunteer and just helping. i'm frustrated and helpless. thank you for listening
You and your sister have a lot on your plates right now with your dad’s illness and your mom’s newly diagnosed Parkinson’s. The old axiom of ‘When it rains, but what it pours’ sure rings true.
While their intentions are honorable, this is not the time for mom and dad to spare you and your sister from the reality of the situation. You’re adults and now in the position of caring for your parents. It’s time to have a frank talk with both of them. They may think they’re helping you but it’s having the opposite effect and creating extra stress on all of you.
Plus, to be honest, this is an important time for end of life discussions to take place. I’m speaking openly because I had my own ordeal with a very aggressive form of leukemia. My family and I had some very deep and meaningful talks because if not now, when?
When you say the hematologist isn’t concerned yet. I guess I don’t know exactly what is meant by that either.
If I were you I’d go right ahead with an email to his doctor. Do you have access to dad’s portal? There’s a direct link to contact his team from that there with a menu for the type of message you’d like to send. My suggestion is to select Followup Question. Be aware that there’s a character limit so it’s important ask your questions and state your concerns succinctly.
I was relieved to read that palliative care is already on board for your dad. I know there is hesitancy with a rare disease to give a timeline because the statistics and data just aren’t there.
But I was able to find information on the end stages of multiple myeloma. Your dad’s disease is closely related to that so some of this will sound very familar. You may have already read these sites but if not here are the links. https://www.epainassist.com/cancer/what-are-the-symptoms-of-end-stage-multiple-myeloma
~~~ https://www.mymyelomateam.com/resources/end-stage-myeloma-what-you-need-to-know
~~~ https://www.immunitytherapycenter.com/blog/what-are-the-final-stages-of-multiple-myeloma/
~~
You’re right, I am a volunteer mentor, but like most of my fellow mentors we’ve been through our own personal challenges with a debilitating or life altering disease, cancer or physical condition. I’ve been through months of aggressive chemo and a bone marrow transplant that had its own set of obstacles. So I really can empathize with what you and your family are going through right now. I am here anytime as a sounding board. Sometimes it just helps to vent.
Please keep me updated on your dad’s health. Sending a gentle hug for all of you…
He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay he finally qualified for the Homebound program (which I've tried to look up and all I found out is a nurse coordinates care so the patient doesn't have to come into Mayo as much). That nurse (Brenda) as of this morning prescribed him something stronger than a lidocaine patch and Aleve for his broken rib pain. He's been in palliative care since his 1st round of chemo. I understand with this disease it's a matter of time. We can't beat it, and it doesn't go away. All we want to know is what to expect. how does this disease progress? We know it's going to kill him but is it going to be constant pain from broken bones or something else? Articles I've found online talk about kidney failure. My dad asked his hematologist at Mayo last week, what kind of timeline he can expect with treatment and what kind of timeline without. He didn't get any useable answer. Articles say without treatment 6-12 months. What will those months look like? What can my mom (who recently got diagnosed with early Parkinsons expect) my dad doesn't want to "worry" my sister and me so getting information from him and my mom is hard. Add his dementia to the mix and it's been a very hard year. Currently my dad gets bloodwork done monthly to monitor plasma levels in his blood. Levels have been rising the last two months and this month rose faster than last month. But the, " Hemotologist isn't concerned yet." I really want to email his dr and ask at what point will they be concerned? how much worse is it going to get when reaching across his body for a drink breaks a rib and isn't concerning to the dr. i appreciate you taking the time to respond. i understand you're a volunteer and just helping. i'm frustrated and helpless. thank you for listening
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?
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?
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.
an update on my dad. He's sick with whatever crud is going around. my mom finally reached out to my dad's hemologist and asked them directly if the recent breaks etc are tied to and or are related to his cancer. the doctor said they didn't know and has ordered another full body PET scan (he's not had one in over a year) when my dad is healthy again. my sister tried to bring up to my mom that "us girls" have noticed that my dad is isolating alot more in the past few months and doesn't sit up right like he used to and my mom denied it and blew it off. i think she's around him so much that it's just normal now and she doesn't really see the difference like us girls do. we help when we can and move on.
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Hi @krismikkalson. Welcome to Connect. Plasma Cell Leukemia looks to be a bit of a rare bird. It’s part of the multiple myeloma family but differs in that higher numbers of abnormal plasma cells are circulating in the blood stream and not isolated to the bone marrow as in traditional MM.
While you’re waiting for other members to share their experiences with PCL, what has your doctor suggested as treatment? What were your symptoms leading up to the diagnosis?
-
Like -
Helpful -
Hug
1 ReactionI don't have it, my dad does. It went to sleep for a few months but it's back. He's continuing to break bones at an alarming rate and ease. But the doctor isn't concerned. Without violating my dad's privacy i'm curious at what point the doctor does become concerned and what to expect in later stages of this disease.
Quite frankly, Kris, the doctor should be concerned now! If I were you, I’d really urge dad to consider having a 2nd opinion and a larger teaching/research hospital like Mayo Clinic, Cleveland Clinic, John Hopkins, or any of the larger university facilities across the US.
From my understanding PCL is quite rare and he’ll have a deeper bench of specialists who may have more information and treatment options for him!
If interested, here’s a link to Mayo Clinic to initiate a request for appointment. http://mayocl.in/1mtmR63
Your dad needs a hematologist oncologist that has experience with this form of leukemia. Was he offered any type of treatment? Has he had a bone marrow biopsy?
-
Like -
Helpful -
Hug
2 Reactionsmy dad is receiving care at Mayo Clinic. he went through a round of subq chemo infusions for about 7-8 months. then as his hemotologist here said. it went to sleep. it came back in November. his monthly bloodwork since has shown that things are growing, this month faster than last month. he's has biopsys scans etc. Since it's incurable and the last round of treatment damn near killed him, he's reluctant to go through treatment since when asked the doctors have failed to give him any kind of answers when he's asked how long does treatment buy him vrs how long he has with no treatment.
-
Like -
Helpful -
Hug
1 ReactionI didn’t realize your dad was already a patient at Mayo. From personal experience, I know the specialists in the hematology department do their utmost to find successful treatments for their patients.
It sounds like your dad was in remission for a while and now the plasma cell leukemia is active again. Unfortunately, even with medications, there can come a time with blood cancers like your dad’s where treatments are no longer effective.
When that happens doctors are reluctant to give time estimates for longevity because it is difficult to predict with a rare disease.
As the cancerous blood cells continue to proliferate in the bone marrow and blood stream, eventually they will crowd out healthy blood cells. This disease is related to multiple myeloma which can cause bone pain, thinning bones and broken bones. With the relapse of his disease there simply may no longer be any options available for treatment. With subsequent blood work, where his doctor can compare one month to the next, they may be able to track rate of progression and give a more definitive answer.
I don’t blame your dad for not being eager to try another round of chemo. Have you spoken with his doctor’s NP or Nurse Coordinator about palliative care for your dad. This is not hospice. I found a good article about palliative care for MM patients. https://www.webmd.com/cancer/multiple-myeloma/palliative-care-multiple-myeloma
How is your dad feeling? Is he fatigued or experiencing any pain or discomfort?
He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay he finally qualified for the Homebound program (which I've tried to look up and all I found out is a nurse coordinates care so the patient doesn't have to come into Mayo as much). That nurse (Brenda) as of this morning prescribed him something stronger than a lidocaine patch and Aleve for his broken rib pain. He's been in palliative care since his 1st round of chemo. I understand with this disease it's a matter of time. We can't beat it, and it doesn't go away. All we want to know is what to expect. how does this disease progress? We know it's going to kill him but is it going to be constant pain from broken bones or something else? Articles I've found online talk about kidney failure. My dad asked his hematologist at Mayo last week, what kind of timeline he can expect with treatment and what kind of timeline without. He didn't get any useable answer. Articles say without treatment 6-12 months. What will those months look like? What can my mom (who recently got diagnosed with early Parkinsons expect) my dad doesn't want to "worry" my sister and me so getting information from him and my mom is hard. Add his dementia to the mix and it's been a very hard year. Currently my dad gets bloodwork done monthly to monitor plasma levels in his blood. Levels have been rising the last two months and this month rose faster than last month. But the, " Hemotologist isn't concerned yet." I really want to email his dr and ask at what point will they be concerned? how much worse is it going to get when reaching across his body for a drink breaks a rib and isn't concerning to the dr. i appreciate you taking the time to respond. i understand you're a volunteer and just helping. i'm frustrated and helpless. thank you for listening
-
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Helpful -
Hug
1 ReactionYou and your sister have a lot on your plates right now with your dad’s illness and your mom’s newly diagnosed Parkinson’s. The old axiom of ‘When it rains, but what it pours’ sure rings true.
While their intentions are honorable, this is not the time for mom and dad to spare you and your sister from the reality of the situation. You’re adults and now in the position of caring for your parents. It’s time to have a frank talk with both of them. They may think they’re helping you but it’s having the opposite effect and creating extra stress on all of you.
Plus, to be honest, this is an important time for end of life discussions to take place. I’m speaking openly because I had my own ordeal with a very aggressive form of leukemia. My family and I had some very deep and meaningful talks because if not now, when?
When you say the hematologist isn’t concerned yet. I guess I don’t know exactly what is meant by that either.
If I were you I’d go right ahead with an email to his doctor. Do you have access to dad’s portal? There’s a direct link to contact his team from that there with a menu for the type of message you’d like to send. My suggestion is to select Followup Question. Be aware that there’s a character limit so it’s important ask your questions and state your concerns succinctly.
I was relieved to read that palliative care is already on board for your dad. I know there is hesitancy with a rare disease to give a timeline because the statistics and data just aren’t there.
But I was able to find information on the end stages of multiple myeloma. Your dad’s disease is closely related to that so some of this will sound very familar. You may have already read these sites but if not here are the links.
https://www.epainassist.com/cancer/what-are-the-symptoms-of-end-stage-multiple-myeloma
~~~
https://www.mymyelomateam.com/resources/end-stage-myeloma-what-you-need-to-know
~~~
https://www.immunitytherapycenter.com/blog/what-are-the-final-stages-of-multiple-myeloma/
~~
You’re right, I am a volunteer mentor, but like most of my fellow mentors we’ve been through our own personal challenges with a debilitating or life altering disease, cancer or physical condition. I’ve been through months of aggressive chemo and a bone marrow transplant that had its own set of obstacles. So I really can empathize with what you and your family are going through right now. I am here anytime as a sounding board. Sometimes it just helps to vent.
Please keep me updated on your dad’s health. Sending a gentle hug for all of you…
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Hug
2 ReactionsHello @krismikkalson,
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?
-
Like -
Helpful -
Hug
2 Reactionsi 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.
-
Like -
Helpful -
Hug
1 Reactionan update on my dad. He's sick with whatever crud is going around. my mom finally reached out to my dad's hemologist and asked them directly if the recent breaks etc are tied to and or are related to his cancer. the doctor said they didn't know and has ordered another full body PET scan (he's not had one in over a year) when my dad is healthy again. my sister tried to bring up to my mom that "us girls" have noticed that my dad is isolating alot more in the past few months and doesn't sit up right like he used to and my mom denied it and blew it off. i think she's around him so much that it's just normal now and she doesn't really see the difference like us girls do. we help when we can and move on.
-
Like -
Helpful -
Hug
2 Reactions