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“Long Distance” treatment
Have any of you had treatment for multiple myeloma from a facility far from home? How does that work? Do they actually do the treatment there, and, if so, how long of a stay is typically required? Or do they decide on a treatment regimen and then have the treatment done in your home city? I’m trying to figure out where to seek treatment if it comes to that. Thanks in advance.
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: “Long Distance” treatment
My husband has a local oncologist in Kalamazoo, MI. After the initial diagnosis, the local doc sent him to Mayo to be worked up, and for the treatment plan. He then went through 3.5 months of chemo locally, then back to Mayo for a stem cell transplant. The local doc has followed him since (21 months), with 2 check ups back at Mayo. Mayo calls the shots, the local doctor follows what Mayo recommends. This has worked very well. We feel like we are getting the best of both worlds: expert advice from Myeloma specialists (Mayo) with local doc seeing him monthly.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: “Long Distance” treatment
In anticipation of beginning treatment in the future, but preferring the approach and philosophy of an out-of-state specialist when it comes to specific chemo treatments, I simply asked my local oncologist if he was cool working with another specialist on my treatment protocol. He had no hesitation and agreed readily. I then contacted the remote specialist for a face-to-face meeting (this initial face-to-face visit was understandably a requirement for being a patient of the remote specialist), with the understanding that I wanted to do my treatments here in my own state and that my local doc would administer the treatments (likely to be those recommended by my remote doc), perform all of the lab tests and share my test results with the remote doc. Again, no hesitation on the remote doctor's part either.
In general, I have found no issue with the willingness of any of my docs to collaborate on my treatment. In fact, they seem quite interested in the prospect of networking with other docs on my case. If I did find a doctor unwilling to collaborate with another doctor of my choosing, I would simply seek out another doctor
In general, I have found no issue with the willingness of any of my docs to collaborate on my treatment. In fact, they seem quite interested in the prospect of networking with other docs on my case. If I did find a doctor unwilling to collaborate with another doctor of my choosing, I would simply seek out another doctor
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: “Long Distance” treatment
I worked with both a local oncologist and a specialist from out of state until my neutrophils dropped below 1000 and the local onc began withholding my treatment. After two cancelled Velcade treatments, my specialist asked if she could please be my primary caregiver as she felt more--not less--treatment was critical at the time. Also at Johns Hopkins the nurses alert the doctor when neutrophils are 500 or below, much lower than the threshold at our local hospital. We began the 2 hour drive and never regretted it; at least I was assured of receiving treatment once I got there! If it had been a much longer drive, I suppose I would have needed to search for another local doctor. Anyway, the neutrophil cutoff might be something to discuss with your doctor in advance.
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: “Long Distance” treatment
We have to fly to Singapore from Indonesia once a week for a thirty-second Velcade injection. Yes, this means waking up at 5am, leaving the house at 6am, checking in at 7am, taking off at 830am, reaching Changi Airport at 1130am, and reaching the Singapore General Hospital at 1230pm. We usually take off from Singapore at 6pm on the very same day.
Believe it or not, it has been going on for almost two years! Dad's multiple myeloma is high-risk (p53del); so even after he has undergone ASCT (hopefully next month-ish), he'll still have to do Velcade maintenance once every two weeks (sad).
Nevertheless, it is actually very doable. From another perspective, I believe this schedule is no-match against those who work at the consulting firms, like BCG or McKinsey. These guys have to wake up at 4am to travel, and they do not get to fly home before midnight!
What's said by rumnting is one of the best option. It is great if there's a local facility around you; you should work with them. It does not matter where you have your chemo, as long as the therapy is planned by a solid doctor.
Believe it or not, it has been going on for almost two years! Dad's multiple myeloma is high-risk (p53del); so even after he has undergone ASCT (hopefully next month-ish), he'll still have to do Velcade maintenance once every two weeks (sad).
Nevertheless, it is actually very doable. From another perspective, I believe this schedule is no-match against those who work at the consulting firms, like BCG or McKinsey. These guys have to wake up at 4am to travel, and they do not get to fly home before midnight!
What's said by rumnting is one of the best option. It is great if there's a local facility around you; you should work with them. It does not matter where you have your chemo, as long as the therapy is planned by a solid doctor.
Re: “Long Distance” treatment
Thank you for your replies. Reading your stories is a real inspiration. I hope that treatment goes well for all of you.
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: “Long Distance” treatment
I travel 300 miles round trip to USC for treatment
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: “Long Distance” treatment
Thanks for your replies everybody!
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: “Long Distance” treatment
Dom was treated at the Tulane Cancer Center in NOLA. About 85 miles away...much of it on back roads.
A couple months prior to his SCT, we rented an apartment about 7 miles away. I had it professionally sanitized prior to his return to our new home.
Stayed there 6 months. It sure made things easier for us.
A couple months prior to his SCT, we rented an apartment about 7 miles away. I had it professionally sanitized prior to his return to our new home.
Stayed there 6 months. It sure made things easier for us.
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
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