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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
Replies to "He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay..."
Hello @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?
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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
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https://www.mymyelomateam.com/resources/end-stage-myeloma-what-you-need-to-know
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https://www.immunitytherapycenter.com/blog/what-are-the-final-stages-of-multiple-myeloma/
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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…