My husband is supposed to have a stem cell transplant around August, and we're now considering our options. I understand that this treatment has become somewhat "routine", but we are being offered very different procedures depending on if we have this done at our local hospital (almost like out-patient with check-ups), or at our "center of excellence" hospital that has been determining and following treatment (one month hospital stay with 2 more months of daily check-ups). To do the 3 month treatment, we'd need to move out of town for three months since they are located 2 hours from home, which would be very difficult with 2 teenage kids.
Is there any data on which approach is better? Is there another way we should consider? It seems like such a critical step, we don't want to do it "wrong", so if three months is what we need to do, we'll do it. What should we be looking for as we consider options?
Thanks,
Sandy
Forums
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Out-patient stem cell transplant vs. one month hospital
I think that one question you might ask of your local 'out patient' type clinic is what would happen were your husband need to be hospitalized. Do they have a unit that has the protective features of a transplant unit? One feature is that the air circulation is blocked off from the main hospital, and even having a feature of 'reverse flow'. This is to prevent air borne infections from spreading from room to room in the hospital.
In my case, there is a transplant unit at my local cancer centre. I was treated there, and stayed overnight for two days, but because I was doing well,was sent home. I still had to go for checkups daily after the transplant, and was even hospitalized once during the aftermath of the transplant. Because we live a short distance from the hospital, we could do this. Other folks from out of town were more likely just to stay in hospital for 2-3 weeks after their infusion of their own stem cells happened. Their families could stay in an apartment tower on the site of the hospital that is meant for families from out of town.
You can't assume that after taking the strong malphalan and having one's stem cells infused, along with taking neupogen for encouraging the growth of the blood cells, that all can be done on an outpatient basis. THere could be times when hospitalization is called for. Simple procedures such as intravenous hydration can be done at a clinic (out patient) though. Hope that helps! Good luck!
In my case, there is a transplant unit at my local cancer centre. I was treated there, and stayed overnight for two days, but because I was doing well,was sent home. I still had to go for checkups daily after the transplant, and was even hospitalized once during the aftermath of the transplant. Because we live a short distance from the hospital, we could do this. Other folks from out of town were more likely just to stay in hospital for 2-3 weeks after their infusion of their own stem cells happened. Their families could stay in an apartment tower on the site of the hospital that is meant for families from out of town.
You can't assume that after taking the strong malphalan and having one's stem cells infused, along with taking neupogen for encouraging the growth of the blood cells, that all can be done on an outpatient basis. THere could be times when hospitalization is called for. Simple procedures such as intravenous hydration can be done at a clinic (out patient) though. Hope that helps! Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Out-patient stem cell transplant vs. one month hospital
Hi Nancy,
Thanks so much for your response and insight. I love the question about the hospital air system. I'm hoping that we can come up with a solution where my husband may be in the hospital for a few weeks, but can then go back home and do the followup at our local oncologist's office.
This is such a maze and so many choices - it's difficult to know how to balance treating the disease as best possible, and how to continue managing a household with teenagers.
Sandy
Thanks so much for your response and insight. I love the question about the hospital air system. I'm hoping that we can come up with a solution where my husband may be in the hospital for a few weeks, but can then go back home and do the followup at our local oncologist's office.
This is such a maze and so many choices - it's difficult to know how to balance treating the disease as best possible, and how to continue managing a household with teenagers.
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Out-patient stem cell transplant vs. one month hospital
Sandy,
After my experience with having a SCT done at City of Hope and reading and hearing about the experience other people had with SCT, I would think twice about doing a SCT at a regional hospital. At City of Hope they told me that an individual patient’s response to how they endure a SCT can vary quite a bit. They had one patient who seemed to be almost completely unaffected, eating the whole time and even bringing in his office fax and copy machine, working from the bed asking every day when he could go home. At the other extreme for some the procedure severely weakens the patient requiring intensive care.
As Nancy said centers of excellence have special isolations room to reduce the risk of infection during that critical period when the body immune system is destroyed that regular hospitals do not have. The risk of infection in a regular hospital is probably greater than inside your own home, which is why I believe they send you home. But what if you get a serious infection at home and need intensive care, what are you going to do? Go to the regular hospital which is probably an even worse environment than the home? You probably cannot get into the center of excellence isolation rooms at that point, they are usually always filled.
It can also take quite a bit to take care of a SCT patient. The room and bathroom needs to be kept spotless clean as they were done at City of Hope. There are also diet restrictions and City of Hope made sure that there was nothing on the menu for me that was potentially dangerous to eat, if I could eat. I had trouble eating and keeping food down so they feed me nutrition through an IV, I am not sure you could do that at home. I also had ready access to a nursing staff that was very familiar with SCT complications and immediate access to any drugs or medications I would need.
City of Hope was between an hour and two hours away from any of my friends or family. Two hours drive may seem like a long way away but in my experience it really is not. The three weeks I was there passed much quicker than my previous one week hospital stays I had. For most of the three weeks I was at City of Hope I was on lots of anti-nausea medications, fatigued and tired, and slept a lot. Most hours of the day I was really not energetic enough to entertain visitors and just wanted to rest and sleep. I brought in a bunch of magazines and books to read which I hardly touched. My mind was too fogged and I could not concentrate on reading anything. My GF would come and see me two to three times a week for a few hours and I would talk to her on the phone every day. There really was not much she could do for me there and as it was she often found herself just sitting in the room trying to pass time while I was sleeping.
At City of Hope it was not necessarily a rigid time schedule when they would release you, it all depended on how you were doing and in particular how the immune system and the ability to fight infection was recovering. During that time period when I was pretty blasted with fatigue, I was not ready to come home. If your husband responds well and recovers quickly from the SCT, I think it would be likely they would release him early, if he is not, he probably does not want to be at home anyway.
After my experience with having a SCT done at City of Hope and reading and hearing about the experience other people had with SCT, I would think twice about doing a SCT at a regional hospital. At City of Hope they told me that an individual patient’s response to how they endure a SCT can vary quite a bit. They had one patient who seemed to be almost completely unaffected, eating the whole time and even bringing in his office fax and copy machine, working from the bed asking every day when he could go home. At the other extreme for some the procedure severely weakens the patient requiring intensive care.
As Nancy said centers of excellence have special isolations room to reduce the risk of infection during that critical period when the body immune system is destroyed that regular hospitals do not have. The risk of infection in a regular hospital is probably greater than inside your own home, which is why I believe they send you home. But what if you get a serious infection at home and need intensive care, what are you going to do? Go to the regular hospital which is probably an even worse environment than the home? You probably cannot get into the center of excellence isolation rooms at that point, they are usually always filled.
It can also take quite a bit to take care of a SCT patient. The room and bathroom needs to be kept spotless clean as they were done at City of Hope. There are also diet restrictions and City of Hope made sure that there was nothing on the menu for me that was potentially dangerous to eat, if I could eat. I had trouble eating and keeping food down so they feed me nutrition through an IV, I am not sure you could do that at home. I also had ready access to a nursing staff that was very familiar with SCT complications and immediate access to any drugs or medications I would need.
City of Hope was between an hour and two hours away from any of my friends or family. Two hours drive may seem like a long way away but in my experience it really is not. The three weeks I was there passed much quicker than my previous one week hospital stays I had. For most of the three weeks I was at City of Hope I was on lots of anti-nausea medications, fatigued and tired, and slept a lot. Most hours of the day I was really not energetic enough to entertain visitors and just wanted to rest and sleep. I brought in a bunch of magazines and books to read which I hardly touched. My mind was too fogged and I could not concentrate on reading anything. My GF would come and see me two to three times a week for a few hours and I would talk to her on the phone every day. There really was not much she could do for me there and as it was she often found herself just sitting in the room trying to pass time while I was sleeping.
At City of Hope it was not necessarily a rigid time schedule when they would release you, it all depended on how you were doing and in particular how the immune system and the ability to fight infection was recovering. During that time period when I was pretty blasted with fatigue, I was not ready to come home. If your husband responds well and recovers quickly from the SCT, I think it would be likely they would release him early, if he is not, he probably does not want to be at home anyway.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Out-patient stem cell transplant vs. one month hospital
My husband's transplant was done as a planned out-patient at Mayo. He did wind up admitted for 10 days because of severe nausea. About 3 weeks after the transplant (3 or 4 days after being an inpatient), we were discharged to home (9 hours away). After we got home, I think he only had to be followed every week or so by the local oncologist.
At the time our 2 kids were 17 (girl - senior in high school) and 19 (son - sophomore in college). We had no relatives that lived anywhere near, nor that could come stay. My kids really rose to the occasion. I wasn't worried about the 19 year old, but I was pretty nervous about the high schooler. She really rose to the occasion! She only missed one day of school, and made her best grades ever. There were no parties at our house. She told us later that she didn't want to take advantage of the situation. Because my husband's m-spike was still too high prior to the transplant, he had to receive additional chemo at Mayo before the transplant. It added 2 weeks to the process before the ASCT. We were gone for 7 weeks. I came home for one 3 day weekend just before the transplant.
Good luck to both of you!
At the time our 2 kids were 17 (girl - senior in high school) and 19 (son - sophomore in college). We had no relatives that lived anywhere near, nor that could come stay. My kids really rose to the occasion. I wasn't worried about the 19 year old, but I was pretty nervous about the high schooler. She really rose to the occasion! She only missed one day of school, and made her best grades ever. There were no parties at our house. She told us later that she didn't want to take advantage of the situation. Because my husband's m-spike was still too high prior to the transplant, he had to receive additional chemo at Mayo before the transplant. It added 2 weeks to the process before the ASCT. We were gone for 7 weeks. I came home for one 3 day weekend just before the transplant.
Good luck to both of you!
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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: Out-patient stem cell transplant vs. one month hospital
Hi! My dad did outpatient-looking back we would not have had it any other way. I'm an RN-hospitals just aren't the place you want to be when immunocompromised. The excellent care team required him to be within 30 miles of the clinic so he stayed in the comforts of my home. Sure, we had daily trips to the clinic, and I would sometimes wake him for 1 of 5 doses of pills/day-but it was nothing! He got to have his dog with him, comfy, quiet surroundings (hospitals are so filled with constant noise), cable TV. He honestly was never sick enough to be confined in the hospital. Ever.
For us, the anticipation and imagination as worse than the actual event. The medical community would never offer outpatient if there was significant risk.
You always have the option to have him admitted should something happen.
Best of luck!
For us, the anticipation and imagination as worse than the actual event. The medical community would never offer outpatient if there was significant risk.
You always have the option to have him admitted should something happen.
Best of luck!
Re: Out-patient stem cell transplant vs. one month hospital
Eric Hofacket wrote:
> Sandy,
>
> After my experience with having a SCT done at City of Hope and reading and
> hearing about the experience other people had with SCT, I would think twice
> about doing a SCT at a regional hospital...
My father is getting out of the hospital tomorrow! He had almost the exact experience as you did, Eric. Tired all the time, nauseous, "just existing" as he would say. We visited every few days and he just wanted to sleep. (body heals while sleeping!)
However, I wouldn't have it any other way. The hospital (Brigham & Womens in Boston, next to Dana Farber) had a special ward just for stem cell transplantation. Measuring fluids, positively pressurized and airlocked rooms, sanitization up the wazoo, blood infusions at the ready (he needed two of those), anti-nausea stuff, attentive staff who worked there for decades, etc etc etc etc ..... at home, he probably would have gotten an infection but he only had nausea which is easily treatable. Infections and fever are super serious when you have ZERO immune system.
> Sandy,
>
> After my experience with having a SCT done at City of Hope and reading and
> hearing about the experience other people had with SCT, I would think twice
> about doing a SCT at a regional hospital...
My father is getting out of the hospital tomorrow! He had almost the exact experience as you did, Eric. Tired all the time, nauseous, "just existing" as he would say. We visited every few days and he just wanted to sleep. (body heals while sleeping!)
However, I wouldn't have it any other way. The hospital (Brigham & Womens in Boston, next to Dana Farber) had a special ward just for stem cell transplantation. Measuring fluids, positively pressurized and airlocked rooms, sanitization up the wazoo, blood infusions at the ready (he needed two of those), anti-nausea stuff, attentive staff who worked there for decades, etc etc etc etc ..... at home, he probably would have gotten an infection but he only had nausea which is easily treatable. Infections and fever are super serious when you have ZERO immune system.
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eazyd - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 61
Re: Out-patient stem cell transplant vs. one month hospital
I did mine Jan. 21st as a outpatient here in Denver at a transplant center. Went in every morning for three weeks. Got fluids and any additional "additives" they deemed necessary. After three weeks I went in every other day until my WBC got high enough (roughly two more weeks). Then it was done and I was back at work. I battled PN and nausea but worked my way through it with a bunch of good drugs. Wasn't nearly as bad as I expected.
I to was given a one month hospital stay option. What I dont' understand is why they think you need daily checkups two months following the 4 week transplant time frame. Jerry.
I to was given a one month hospital stay option. What I dont' understand is why they think you need daily checkups two months following the 4 week transplant time frame. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Out-patient stem cell transplant vs. one month hospital
My husband was able to do outpatient transplant in Houston. We were fortunate enough to have family members and jobs that were super lenient in helping with the appointments and every thing that went with it. I would highly recommend outpatient for a few reasons as long as the patient has a facility close by for the just in case moments or if they get the nuetropenic fever once they start grafting!! I would recommend outpatient so the patient can be at home and feel more comfortable and not so isolated. My husband said that if he would have been "stuck" in a room by himself for a month he would have gone crazy! He enjoyed the fact that I was able to see him everyday, make sure he was comfortable, have home cooked meals, and most of all the companionship. He also said that it helped in his low moments that I was there immediately instead of having to wait for me to drive the dreaded 30 minute ride downtown. He also appreciated the fact that he didn't have someone coming in every hour to check on him and annoy him lol. With all that being said, outpatient in my opinion is better mentally for the patient. Helps them recover faster!
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Groovy83
Re: Out-patient stem cell transplant vs. one month hospital
I was a strong 49 year old woman with a supportive husband and friends when I had my asct at Stanford bone marrow transplant center.
This program was outpatient. Yes, we needed to rent a furnished apartment, my husband had to take a leave from his work, and even our dog came. The driving back and forth to the hospital ,waiting in the waiting room seven days a week, wearing a 24 hour medication pump was horrible. They also required a large hepa filter mask to be worn. This would have not been the case if I was inpatient. The nursing care my husband was required to perform also would not have been required inpatient let alone bathing, food prep, driving back and forth, picking up all my medications and administering them and a long long list of other duties.
I would have loved to have had qualified nursing care when I was so sick and weak.
I DO NOT recommend out patient transplants. I cannot believe they make patients do this. The whole experience was a nightmare and it did not have to be so difficult.
My two girlfriends, my age, had a much better experience. One was inpatient at Los Angeles, City of Hope, the other friend was at Univ of California, San Francisco. I visited the friend during her transplant at UCSF and she had excellent care.
I hope this helps. I wish someone had warned me as I would have gone to UCSF.
On a positive note, I am 53 years old and doing very well with stable disease.
This program was outpatient. Yes, we needed to rent a furnished apartment, my husband had to take a leave from his work, and even our dog came. The driving back and forth to the hospital ,waiting in the waiting room seven days a week, wearing a 24 hour medication pump was horrible. They also required a large hepa filter mask to be worn. This would have not been the case if I was inpatient. The nursing care my husband was required to perform also would not have been required inpatient let alone bathing, food prep, driving back and forth, picking up all my medications and administering them and a long long list of other duties.
I would have loved to have had qualified nursing care when I was so sick and weak.
I DO NOT recommend out patient transplants. I cannot believe they make patients do this. The whole experience was a nightmare and it did not have to be so difficult.
My two girlfriends, my age, had a much better experience. One was inpatient at Los Angeles, City of Hope, the other friend was at Univ of California, San Francisco. I visited the friend during her transplant at UCSF and she had excellent care.
I hope this helps. I wish someone had warned me as I would have gone to UCSF.
On a positive note, I am 53 years old and doing very well with stable disease.
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Bay Area girl
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