Just an FYI for some of the forum readers. Plasma cell leukemia is a form of multiple myeloma. This is when the myeloma cells are no longer confined to the bone marrow, but are also seen in the blood stream.
This is a great forum to support and help each other through our journey with myeloma. I read and reply here frequently, especially to ask if others have experiences similar to mine. It's comforting to know that "I'm not the only one...." My biggest question is when do I call my PCP rather than my oncologist? Myeloma effects so many body sytems, I usually start with my cancer office and let them refer me to whoever they think is best.
I have also spent a lot of time googling and looking for answers for this and that. What I found is best is to ask my oncologist. I have no reason to doubt him as he has facilitated a complete response against my aggressive and rare form (plasma cell leukemia, monosomy 13, t14;16) of this beast! So my new rule of thumb is that my doctor worries about the myeloma and I work on living life.
Being a registered nurse, it was hard learning to be the patient. Some say that it is a plus to be a nurse, but I can say that it ended up being more of a vice, since your mind can dream up all sorts of diagnosis. I am not saying that I am going to be a puppet and ask no questions. It's good to be knowledgeable and understand stuff. But, it is dangerous to start self-diagnose signs and symptoms, or wonder why do some patients get PET Scans and MRI's and my doc just orders an xray. This is recipe for worry, loss of trust between the care team and patient. Trust is so important. If there is one thing I have heard over and over, it is that myeloma is different in everyone and what works for me doesn't mean it will work for others.
My diagnosis was just 18 months ago and since then, four members of my support group have lost the battle against multiple myeloma. I could worry and wonder when it will be me. But I am learning to be thankful for each and every day I have, for the ability to work one day a week and attend important events of my young adult children. My priorities have changed and I realize that some things just aren't worrying about. I know that one day I will relapse so worrying about it won't help. When that day comes, I have a great doctor, loving family, caring friends and faith knowing my Savior has a plan for me, and He loves me and knows what is best. He has proved it to me time and time again.
Hebrews 12:1
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: A clarification and a concern
It is good to hear you are having success with disease control with your treatment.
Great point about raising the question of when to go to your PCP or oncologist. I have thought about and dealt with this a lot. I try to keep my PCP informed about what is going on with my treatment and he does take an interest. For me, I find with a weak immune system and being on Revlimid I go through periods where my WBC count drops and I get sick easily. My oncologist is about 45 minutes away with no traffic and is booked up for routine appointments weeks out and is often teaching at another locations. My PCP or urgent care doctors who have never seen me before are often the ones who deal with these problems since they are more readily available and only about 15 minutes from where I live. So I like to keep my PCP updated on my status and often I have to explain a bit of my situation to the Urgent Care doctors too when I see them.
I am in an HMO (Kaiser), so my PCP and the Urgent Care doctors have complete access to all my medical records and this helps a great deal. They also can contact my oncologist and have done so more than once. I can also email my oncologist if I have non urgent questions and he responds usually within a few days. I have only had to go to the ER twice at the same hospital my oncologist was in and they ended up admitting me both times.
A few years ago when I was having lot of pain from neuropathy my PCP dealt with that too. He was familiar with it and what drugs to prescribe to try an alleviate the pain. He also was good about getting me sent to a neurologist quickly to examine me too. My PCP also helped me with the severe loss of appetite and weight loss I had while on Velcade.
There are a lot of Beacon members who are seeing myeloma specialist some distance from where they live and I am sure they also have to work out some kind of balance between PCP and their specialist. I also imagine the specialist are in high demand dealing with the major treatment issues and probably do not see their patients for everything especially when they are not locally located.
I would be interested in hearing more about how others deal with their PCP / oncologist treatment balance.
Great point about raising the question of when to go to your PCP or oncologist. I have thought about and dealt with this a lot. I try to keep my PCP informed about what is going on with my treatment and he does take an interest. For me, I find with a weak immune system and being on Revlimid I go through periods where my WBC count drops and I get sick easily. My oncologist is about 45 minutes away with no traffic and is booked up for routine appointments weeks out and is often teaching at another locations. My PCP or urgent care doctors who have never seen me before are often the ones who deal with these problems since they are more readily available and only about 15 minutes from where I live. So I like to keep my PCP updated on my status and often I have to explain a bit of my situation to the Urgent Care doctors too when I see them.
I am in an HMO (Kaiser), so my PCP and the Urgent Care doctors have complete access to all my medical records and this helps a great deal. They also can contact my oncologist and have done so more than once. I can also email my oncologist if I have non urgent questions and he responds usually within a few days. I have only had to go to the ER twice at the same hospital my oncologist was in and they ended up admitting me both times.
A few years ago when I was having lot of pain from neuropathy my PCP dealt with that too. He was familiar with it and what drugs to prescribe to try an alleviate the pain. He also was good about getting me sent to a neurologist quickly to examine me too. My PCP also helped me with the severe loss of appetite and weight loss I had while on Velcade.
There are a lot of Beacon members who are seeing myeloma specialist some distance from where they live and I am sure they also have to work out some kind of balance between PCP and their specialist. I also imagine the specialist are in high demand dealing with the major treatment issues and probably do not see their patients for everything especially when they are not locally located.
I would be interested in hearing more about how others deal with their PCP / oncologist treatment balance.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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