Hi all,
I have been asked to give a patients perspective on the value of care and treatment close to home. I will be giving the talk to approximately 60 newly qualified, or soon to qualify, Radiation Therapists. As I have only had reduced intensity TBI and no targeted radiation I was hoping on getting some insights from other beacon readers. Even if you haven't had radiation treatment but would like to contribute feel free to do so, it all helps.
Some may ask how close is close to home. We may have different definitions on this so I will say that a 2 hour drive one way is NOT close to home. What are peoples thoughts on say 1 hour drive from home?
Thanks,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How important to you is treatment close to home?
I am sure this question comes to mind for those who live within a days drive distance of one of the recognized myeloma specialty cancer treatment centers.
In have not had any radiation therapy but for the chemo treatments and lab testing I had to do I am glad I had them available within an hour from my home at Kaiser Riverside. At initial diagnosis I had really bad back pain and it was a struggle to get into a car and sit for very long. The back pain went away but then the fatigue became really bad and being in the car for long periods of time was exhausting. At one point I do believe that spending large amounts of time in the car driving or not as opposed to resting at home would have been detrimental to me both physically and mentally. I was able to drive myself to most of my treatments and appointments except for some of the ones at Kaiser Sunset in Los Angles about two hours from me and City of Hope in Monrovia which is also about two hours from me. I liked being able to get my regular basic treatments and labs close to home and at a facility where they got to know me well and still having access to myeloma specialist and City of Hope for my SCT within a few hours.
Almost everyone I know works. I felt I would need a really good reason to ask someone to take time off work to drive me for a treatment or lab that I could have done locally.
In have not had any radiation therapy but for the chemo treatments and lab testing I had to do I am glad I had them available within an hour from my home at Kaiser Riverside. At initial diagnosis I had really bad back pain and it was a struggle to get into a car and sit for very long. The back pain went away but then the fatigue became really bad and being in the car for long periods of time was exhausting. At one point I do believe that spending large amounts of time in the car driving or not as opposed to resting at home would have been detrimental to me both physically and mentally. I was able to drive myself to most of my treatments and appointments except for some of the ones at Kaiser Sunset in Los Angles about two hours from me and City of Hope in Monrovia which is also about two hours from me. I liked being able to get my regular basic treatments and labs close to home and at a facility where they got to know me well and still having access to myeloma specialist and City of Hope for my SCT within a few hours.
Almost everyone I know works. I felt I would need a really good reason to ask someone to take time off work to drive me for a treatment or lab that I could have done locally.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How important to you is treatment close to home?
Thanks for your reply Eric. I had really bad back pain as well so was glad that my treatment started at a hospital 20 mins from home, it also made it easier for my children to visit. Your reply regarding someone to drive you is helpful - I had forgotten that - my husband would have to take time off work.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How important to you is treatment close to home?
Hi Libby,
I was diagnosed about 8 months ago and felt from day one that there was no reason for me or my husband to drive excessive distances to get treatment that's available within a 50 mile distance.
I could have gone locally but decided against it and went to the next town 40 miles away which also had a larger hospital. Yet, I could have gone to a pretty well known center that's about 110 miles from my house. I had radiation treatments and didn't want to live on the road (as these treatments can really add up and are usually scheduled 2 or 3 times a week).
Also, as far as the actual chemo treatments are concerned, I feel/felt perfectly happy to go to the same center 40 miles away. I know, some urged me to go to this "fancy center" and "that one" but I figured, the main protocol is coming down from the trials anyway, going to the teaching hospitals etc. etc. and then comes down to the "hemo/onco" either through journals, etc. etc. and or prescription guide format. Maybe, if I would be much younger and have young children at home I might look differently at this situation.
I had corresponded with some multiple myeloma care takers who tried to talk me into going to Arkansas for treatment and when I heard how long their relatives survived, I took my chances to get "good enough" treatment here. Kate
I was diagnosed about 8 months ago and felt from day one that there was no reason for me or my husband to drive excessive distances to get treatment that's available within a 50 mile distance.
I could have gone locally but decided against it and went to the next town 40 miles away which also had a larger hospital. Yet, I could have gone to a pretty well known center that's about 110 miles from my house. I had radiation treatments and didn't want to live on the road (as these treatments can really add up and are usually scheduled 2 or 3 times a week).
Also, as far as the actual chemo treatments are concerned, I feel/felt perfectly happy to go to the same center 40 miles away. I know, some urged me to go to this "fancy center" and "that one" but I figured, the main protocol is coming down from the trials anyway, going to the teaching hospitals etc. etc. and then comes down to the "hemo/onco" either through journals, etc. etc. and or prescription guide format. Maybe, if I would be much younger and have young children at home I might look differently at this situation.
I had corresponded with some multiple myeloma care takers who tried to talk me into going to Arkansas for treatment and when I heard how long their relatives survived, I took my chances to get "good enough" treatment here. Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: How important to you is treatment close to home?
Thanks Kate. I think there is a balance between quality of treatment and how close you are to home in order to get it.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How important to you is treatment close to home?
My drive was two hours one way, for two days of treatment, then the return drive. This occurred three weeks out of four for the first eight cycles, then every other week for the remaining sixteen cycles. Contributing factors for my choice to do this included:
- I was fortunate to be in good enough health, and had limited side effects, so I could drive myself. If I had to be driven, it would have been much more difficult since my wife also works.
- I had a place to stay overnight, so the cost of a hotel was not an issue.
- I enjoy listening to audio books, so they kept the drive from being too monotonous.
- I was not impressed by my local oncologist and felt I had much better options elsewhere.
- I was looking for something other than a stem cell transplant and had few, if any, other options locally. If I had just gone for the stem cell transplant, I probably would have done it locally in spite of not liking my oncologist.
- Along those lines, the out-of-town option gave me the opportunity to get into the CRD trial. Once that became available, I was willing to make the drive given its potential.
In summary, I would agree with you that it comes down to balancing quality of life with the potential for improved treatment. I might also add how well you like the staff and facility since you may be spending a lot of time there.
- I was fortunate to be in good enough health, and had limited side effects, so I could drive myself. If I had to be driven, it would have been much more difficult since my wife also works.
- I had a place to stay overnight, so the cost of a hotel was not an issue.
- I enjoy listening to audio books, so they kept the drive from being too monotonous.
- I was not impressed by my local oncologist and felt I had much better options elsewhere.
- I was looking for something other than a stem cell transplant and had few, if any, other options locally. If I had just gone for the stem cell transplant, I probably would have done it locally in spite of not liking my oncologist.
- Along those lines, the out-of-town option gave me the opportunity to get into the CRD trial. Once that became available, I was willing to make the drive given its potential.
In summary, I would agree with you that it comes down to balancing quality of life with the potential for improved treatment. I might also add how well you like the staff and facility since you may be spending a lot of time there.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: How important to you is treatment close to home?
This is a great question. I've wondered the same thing, so I'm glad you asked.
I live in New Jersey and get my treatment in New York City. With normal traffic it is about a 1.5 hour drive one way to the hospital. But I usually take the train, then the NYC subway, then walk a few blocks, which adds up to about 2 hours door-to-door. On the train I can read, catch up on email, etc. so I like that better than dealing with NYC traffic.
There are one or two myeloma centers a little closer to where I live, but I am confident that I am getting top-notch care from where I'm going in NYC. Plus I am able to participate in a clinical trial. I'm not screwing around with multiple myeloma; a little longer commute is well worth it to me.
I should note, however, that the 2-hour commute was pretty rough on my wife when she was coming into the hospital to visit me after my ASCT. The commute got old for her very quickly. But she's great, and she kept coming to see me anyway.
I live in New Jersey and get my treatment in New York City. With normal traffic it is about a 1.5 hour drive one way to the hospital. But I usually take the train, then the NYC subway, then walk a few blocks, which adds up to about 2 hours door-to-door. On the train I can read, catch up on email, etc. so I like that better than dealing with NYC traffic.
There are one or two myeloma centers a little closer to where I live, but I am confident that I am getting top-notch care from where I'm going in NYC. Plus I am able to participate in a clinical trial. I'm not screwing around with multiple myeloma; a little longer commute is well worth it to me.
I should note, however, that the 2-hour commute was pretty rough on my wife when she was coming into the hospital to visit me after my ASCT. The commute got old for her very quickly. But she's great, and she kept coming to see me anyway.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How important to you is treatment close to home?
Thanks for your replies Kevin and Mike. I agree with you Kevin that liking the staff is important - they need to be seen as human 
. Mike, at one stage my husband was dropping the kids off at school then driving two hours to see me, having a coffee, watch me sleep then drive home to pick up the kids from school. It can be pretty tough on the caregivers.
. Mike, at one stage my husband was dropping the kids off at school then driving two hours to see me, having a coffee, watch me sleep then drive home to pick up the kids from school. It can be pretty tough on the caregivers.-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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