I was diagnosed in November 2015 with MGUS by a hematologist and told "not to worry for 6 months," but my bone marrow biopsy showed a 11 percent plasma cell percentage, and I went to multiple myeloma specialist for a second opinion. After 3rd round of tests with the myeloma specialist, I was escalated to high-risk smolder multiple myeloma in April. I am on an "every 6 weeks" testing cycle now as I only barely missed qualifying for the daratumumab trial, so I am to repeat everything in June in hopes of getting in.
I just received notification that the specialist is leaving our university system and moving to a city about 4 hours from my house. I am just coming up on my year anniversary of when my body literally fell apart last June, and after multiple trips to the ER and eventual spinal stenosis surgery, the diagnosis was made. I am so emotional thinking about the hardest year of my life physically and I am so anxious wondering what my health status will be this time next year and then I read the notification and I felt the wind knocked out of my gut like I was punched. The note states that another doctor will be coming in to the myeloma clinic in July and the directive is the schedule with the new doctor coming in or the PA for upcoming appointments.
My specialist has 8 trials open, is very well respected in the field, and he has a great bed side manner. He makes me laugh even when I am a puddle of tears with anxiety over me going from being told "no worries" in November and then 6 months later being considered high risk.
I have enough anxiety knowing my lab draws are coming as the calendar ticks to June this week and now I know this will be the last time I will see my specialist and I feel overwhelmed, uneducated, and know of no other person whom I can talk to about this besides "you all."
Should I follow my specialist? He is moving 3 hours away, so all future visits would require a hotel stay, but isn't that a small price to pay?
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Re: Feel gut punched - myeloma specialist moving
Follow your specialist ! Yes, 3 hours is a long distance, but this is your life and you should feel confident with the person helping you make decisions.
My specialist is about 1.5-2 hours away. I see him every 2-3 months. He develops my treatment plan and it is carried out by an oncologist about 45 minutes away. It works out perfectly, thanks to electronic communication. He is at a large university, appointments are tough to get, but he always answers emails within a day (non emergency). My local doctor sends him updates every week regarding labs etc. It has worked out very well, and I believe this is what most patients do.
Good luck to you. LP
My specialist is about 1.5-2 hours away. I see him every 2-3 months. He develops my treatment plan and it is carried out by an oncologist about 45 minutes away. It works out perfectly, thanks to electronic communication. He is at a large university, appointments are tough to get, but he always answers emails within a day (non emergency). My local doctor sends him updates every week regarding labs etc. It has worked out very well, and I believe this is what most patients do.
Good luck to you. LP
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Feel gut punched - myeloma specialist moving
I would follow the specialist - especially at first. I would see the new local specialist and start with a co-managed situation. See how you feel.
Wishing you the best!
Wishing you the best!
Re: Feel gut punched - myeloma specialist moving
Another option that many people report they can get to work is to have a local hematologist / oncologist who supervises the blood draws, and is in agreement to work under your specialist, who you would see,say, something like twice a year.
Good luck.
Good luck.
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JPC - Name: JPC
Re: Feel gut punched - myeloma specialist moving
We travel 4+ hours every month to see my husband's doctor in Houston and consider it absolutely worth it. I can't imagine starting over with another doctor.
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: Feel gut punched - myeloma specialist moving
I am on the opposite side of the fence. I am on my third "specialist" (first I changed hospitals, so I was seeing the second one, then the doctor moved on to more research and less clinic appointments, so I was referred to number 3). All three have been good in their own way. Once you have been around a while (almost 7 years for me), you end up getting used to seeing so many doctors! Not too mention all the fellows, med students, etc.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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