I am planning an autologous stem cell transplant (ASCT) in the next couple months in an outpatient setting. My wife and I want to plan a diet that would minimize nausea and diarrhea as well as something that can be done easily.
Does anyone have any recommendations? I am thinking a lot of smoothies. What things shouldn't I eat? Did any one have a dietitian help with meal planning?
Thanks,
Paul Jorgensen, Annapolis, MD
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Re: Diet during stem cell transplant recovery
Paul,
I am several months away from my transplant also. I will be an inpatient. I had the cell collection procedure back in March.
The multiple myeloma team gave me a large binder that tells me what I need to know, such as the diet you are asking about. It also talks about preparing / cooking food. For instance, a microwave can leave cold spots in your meal where some bacteria could be present; stirring the food several times and reheating until fully cooked.
There is also several pages in this binder with food groups; one side has allowed and the other not allowed. I was surprised at what I could have. It's a lot more than I expected. Things not to have, to name a few, were bakery breads, cakes and donuts; also raw vegetables, uncooked herbs and spices; unpasteurized or raw milk, yogurt; raw nuts, pre-cut fresh fruits, etc.
Allowed foods, to name a few, are store-bought breads, bagels, rolls, chips, canned fruit, ice cream, well cooked eggs, even Ding Dongs and Twinkies. I don't eat the last two, but it appears that foods with a preservative are high on the ok list.
The list goes on, but your team should have some guidelines as to what they want you to have during and after the transplant. This binder also has sections on home sanitation, grocery shopping hints, food storage and more.
In big bold letters this binder says no restaurant food is to be brought in during transplant. Also, autologous patients must follow this diet for at least 30 days and allogeneic patients for 100 days.
I am sure that each team has different guidelines, but this is what they gave me.
Hope it helps a little.
I am several months away from my transplant also. I will be an inpatient. I had the cell collection procedure back in March.
The multiple myeloma team gave me a large binder that tells me what I need to know, such as the diet you are asking about. It also talks about preparing / cooking food. For instance, a microwave can leave cold spots in your meal where some bacteria could be present; stirring the food several times and reheating until fully cooked.
There is also several pages in this binder with food groups; one side has allowed and the other not allowed. I was surprised at what I could have. It's a lot more than I expected. Things not to have, to name a few, were bakery breads, cakes and donuts; also raw vegetables, uncooked herbs and spices; unpasteurized or raw milk, yogurt; raw nuts, pre-cut fresh fruits, etc.
Allowed foods, to name a few, are store-bought breads, bagels, rolls, chips, canned fruit, ice cream, well cooked eggs, even Ding Dongs and Twinkies. I don't eat the last two, but it appears that foods with a preservative are high on the ok list.
The list goes on, but your team should have some guidelines as to what they want you to have during and after the transplant. This binder also has sections on home sanitation, grocery shopping hints, food storage and more.
In big bold letters this binder says no restaurant food is to be brought in during transplant. Also, autologous patients must follow this diet for at least 30 days and allogeneic patients for 100 days.
I am sure that each team has different guidelines, but this is what they gave me.
Hope it helps a little.
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Diet during stem cell transplant recovery
Hello..
i didn't have GI upset during the transplant recovery.
I think during the post-transplant time period the biggest challenge is avoiding anything that has the potential to have bacteria. As was mentioned above, the bacteria free list includes all sorts of strange things like bakery goods and fresh fruits, and they will give you a list of what to avoid and how to (over)cook everything. Although that cuts out a lot of favorite foods, it isn't too bad.
The bigger challenge, for me, was that I contracted a yeast infection in my mouth that made everything taste terrible, The mouthwash they gave me did not suffice, but the pills and tabs finally did. Until those worked I had a hard time keeping up my caloric intake which impacted my energy and recovery. So I think smoothies and anything that keeps up your calories is good.
Good luck!
i didn't have GI upset during the transplant recovery.
I think during the post-transplant time period the biggest challenge is avoiding anything that has the potential to have bacteria. As was mentioned above, the bacteria free list includes all sorts of strange things like bakery goods and fresh fruits, and they will give you a list of what to avoid and how to (over)cook everything. Although that cuts out a lot of favorite foods, it isn't too bad.
The bigger challenge, for me, was that I contracted a yeast infection in my mouth that made everything taste terrible, The mouthwash they gave me did not suffice, but the pills and tabs finally did. Until those worked I had a hard time keeping up my caloric intake which impacted my energy and recovery. So I think smoothies and anything that keeps up your calories is good.
Good luck!
-
Ginny D
Re: Diet during stem cell transplant recovery
Hello Paul.
I had an ASCT in 2011 being in hospital for 2.5 weeks. I'm sorry to say that my nausea and diarrhea were a problem for me. while my diarrhea resolved before I went home, my aversion to food and nausea remained for about 2 weeks until my physician prescribed steroids (sorry don't remember if it was dex or pred). Within a few days my taste buds returned and the nausea faded away.
I hope this helps.
Regards,
Becky
I had an ASCT in 2011 being in hospital for 2.5 weeks. I'm sorry to say that my nausea and diarrhea were a problem for me. while my diarrhea resolved before I went home, my aversion to food and nausea remained for about 2 weeks until my physician prescribed steroids (sorry don't remember if it was dex or pred). Within a few days my taste buds returned and the nausea faded away.
I hope this helps.
Regards,
Becky
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lattecat - When were you/they diagnosed?: 2010
- Age at diagnosis: 54
Re: Diet during stem cell transplant recovery
Hello Paul:
Let me give you a little bit of input along a slightly different line.
Most (not all) of ASCT patients lose 10-15 pounds during the month or two of procedure and immediate aftermath due to the GI issues. If you are the average patient, and you are 25 pounds above your ideal weight, you are in probably the best shape, weight-wise. People who are underweight, have more side effects with an ASCT than people who are overweight. If you are the "right" weight, you are not ideal, because you will probably come out underweight.
So going into the ASCT and coming out of the ASCT, you should eat heartily. If you are at weight or underweight, you should bulk up a little bit. Coming out of the ASCT, you should be more concerned with getting good, high quality calories, rather than worrying about eating "rabbit food". Based on my research and speaking with the medical professional, the primary issue is weight management. Of course, after you manage your calories well, the calories that you take needs to be "good" calories, not low quality food, however, in fact, that is the secondary issue to weight management.
Good luck,
JPC
Let me give you a little bit of input along a slightly different line.
Most (not all) of ASCT patients lose 10-15 pounds during the month or two of procedure and immediate aftermath due to the GI issues. If you are the average patient, and you are 25 pounds above your ideal weight, you are in probably the best shape, weight-wise. People who are underweight, have more side effects with an ASCT than people who are overweight. If you are the "right" weight, you are not ideal, because you will probably come out underweight.
So going into the ASCT and coming out of the ASCT, you should eat heartily. If you are at weight or underweight, you should bulk up a little bit. Coming out of the ASCT, you should be more concerned with getting good, high quality calories, rather than worrying about eating "rabbit food". Based on my research and speaking with the medical professional, the primary issue is weight management. Of course, after you manage your calories well, the calories that you take needs to be "good" calories, not low quality food, however, in fact, that is the secondary issue to weight management.
Good luck,
JPC
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JPC - Name: JPC
Re: Diet during stem cell transplant recovery
I have re-posted below a previous post I'd made pertaining to the SCT process. In addition, and relating more specifically to your question, it is really important to remember not to get too caught up in planning things. Yes, have some pleasant tasting smoothie ingredients on hand, BUT, don't get carried away. What a SCT patient can or cannot eat cannot be predicted ahead of time.
If you are afflicted with nausea and/or diarrhea, nothing you eat makes much difference. And bear in mind that I have been a lifelong nutrition enthusiast. With the drugs brought to bear around the SCT process, eat what you can, take whatever drugs help, don't plan too far ahead.
---------------------------------------------------------------------------------------------------------------------------------
I have come to learn that each person has their own very unique response to a SCT. Some people sail through the entire process and report virtually no problems. I was not one of those people.
Based on my experience, I would have great difficulty imagining going through the process as an outpatient. I had severe nausea and diarrhea that would have been very difficult for a caregiver to manage at home, or even in a nearby hotel! I was hooked up to a feeding tube for what seemed like forever.
A couple of logistical recommendations that I wish some one had told me about:
make sure they provide you with medicated wipes for the diarrhea--the skin around the anal opening may become extremely raw and inflamed; regular toilet paper was pure torture.
I have never been someone who has been prone to nausea. I've only thrown-up a handful of times in my lifetime, but post transplant I was miserable. None of the standard anti-nausea meds had any affect. Your doctor will probably first prescribe some standard anti-emitic like ondansetron (Zofran), which is a wonderful drug for mild nausea and has virtually no side effects, but not for what I was experiencing! Lorazepam (Ativan) was the only thing that helped. Set it up with your doctor beforehand to have it available as part of your potential treatment protocol. In my case, I found that setting it up so I could get 1/2 doses on a more regular basis worked best. The lorazepam will also help you sleep. A month or two post transplant the ondansetron will again work just fine. Other Beacon members have stated that they requested, and received, Marinol, which is synthetic cannabis--obviously this would also help with appetite
In addition, I found the "low microbe" diet that others have mentioned to be about as appealing as cardboard. When I complained to two of my doctors, they asked if I had tried Boost or Ensure. I asked them if they had ever tasted that crap. That response elicited peels of laughter, and they never recommended either product again. Look, I'm not recommending that others follow my example, but I will say that I feel like the "contraband" food I had friends and family sneak in was a salvation!
If you choose to follow my route, be reasonable. Make sure the food is fully cooked and mild--though I will admit that chili relleno was a godsend. Obviously, an important part of my recovery was to find ways to maintain a sense of humor. If not following some of the overly stringent hospital guidelines helps, well, I'm an advocate.
Just a note of interest on the stringent food guidelines, as a result of trials being done with kids undergoing stem cell transplantation in the same hospital as I was in, they have now dramatically revised and expanded the food choices. Admittedly, chili rellenos are probably still not on the list ...
Lest you think I've portrayed an overly negative picture about the stem cell transplant, I am now 2 years post transplant and have been off all myeloma drugs for over a year. To me this is a miracle, especially when you consider that I started at 12% healthy plasma cells.
Aloha and best to you,
Daniel
If you are afflicted with nausea and/or diarrhea, nothing you eat makes much difference. And bear in mind that I have been a lifelong nutrition enthusiast. With the drugs brought to bear around the SCT process, eat what you can, take whatever drugs help, don't plan too far ahead.
---------------------------------------------------------------------------------------------------------------------------------
I have come to learn that each person has their own very unique response to a SCT. Some people sail through the entire process and report virtually no problems. I was not one of those people.
Based on my experience, I would have great difficulty imagining going through the process as an outpatient. I had severe nausea and diarrhea that would have been very difficult for a caregiver to manage at home, or even in a nearby hotel! I was hooked up to a feeding tube for what seemed like forever.
A couple of logistical recommendations that I wish some one had told me about:
make sure they provide you with medicated wipes for the diarrhea--the skin around the anal opening may become extremely raw and inflamed; regular toilet paper was pure torture.
I have never been someone who has been prone to nausea. I've only thrown-up a handful of times in my lifetime, but post transplant I was miserable. None of the standard anti-nausea meds had any affect. Your doctor will probably first prescribe some standard anti-emitic like ondansetron (Zofran), which is a wonderful drug for mild nausea and has virtually no side effects, but not for what I was experiencing! Lorazepam (Ativan) was the only thing that helped. Set it up with your doctor beforehand to have it available as part of your potential treatment protocol. In my case, I found that setting it up so I could get 1/2 doses on a more regular basis worked best. The lorazepam will also help you sleep. A month or two post transplant the ondansetron will again work just fine. Other Beacon members have stated that they requested, and received, Marinol, which is synthetic cannabis--obviously this would also help with appetite
In addition, I found the "low microbe" diet that others have mentioned to be about as appealing as cardboard. When I complained to two of my doctors, they asked if I had tried Boost or Ensure. I asked them if they had ever tasted that crap. That response elicited peels of laughter, and they never recommended either product again. Look, I'm not recommending that others follow my example, but I will say that I feel like the "contraband" food I had friends and family sneak in was a salvation!
If you choose to follow my route, be reasonable. Make sure the food is fully cooked and mild--though I will admit that chili relleno was a godsend. Obviously, an important part of my recovery was to find ways to maintain a sense of humor. If not following some of the overly stringent hospital guidelines helps, well, I'm an advocate.
Just a note of interest on the stringent food guidelines, as a result of trials being done with kids undergoing stem cell transplantation in the same hospital as I was in, they have now dramatically revised and expanded the food choices. Admittedly, chili rellenos are probably still not on the list ...
Lest you think I've portrayed an overly negative picture about the stem cell transplant, I am now 2 years post transplant and have been off all myeloma drugs for over a year. To me this is a miracle, especially when you consider that I started at 12% healthy plasma cells.
Aloha and best to you,
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Diet during stem cell transplant recovery
Hi Paul,
You've gotten good advice from the previous responders to this thread. I just want to add a caveat and an anecdote.
First the caveat. While JPC is correct that most SCT patients do lose some weight, it is also true that being healthy (other than the myeloma) and as fit as possible before the SCT help with the SCT recovery. Also forcing yourself to exercise during the SCT recovery period is important, especially when you don't feel like exercising.
Now for the anecdote. DanielR is so right about not being able to predict how you'll respond ahead of time, especially with regard to what foods will taste good or bad. I've always liked hard boiled eggs. So for the first several days of my in-patient SCT I ordered hard boiled eggs for breakfast. I remember on a couple of those days that they were by far the best tasting hard boiled eggs I had ever had. They were so good, it was almost a religious experience eating them. Then when my hard boiled egg came the next day, it made me nauseous and I couldn't get anywhere near a hard boiled egg again for months after that.
You never know!
Best wishes for a smooth and successful SCT. Please keep us posted on how it goes.
Mike
You've gotten good advice from the previous responders to this thread. I just want to add a caveat and an anecdote.
First the caveat. While JPC is correct that most SCT patients do lose some weight, it is also true that being healthy (other than the myeloma) and as fit as possible before the SCT help with the SCT recovery. Also forcing yourself to exercise during the SCT recovery period is important, especially when you don't feel like exercising.
Now for the anecdote. DanielR is so right about not being able to predict how you'll respond ahead of time, especially with regard to what foods will taste good or bad. I've always liked hard boiled eggs. So for the first several days of my in-patient SCT I ordered hard boiled eggs for breakfast. I remember on a couple of those days that they were by far the best tasting hard boiled eggs I had ever had. They were so good, it was almost a religious experience eating them. Then when my hard boiled egg came the next day, it made me nauseous and I couldn't get anywhere near a hard boiled egg again for months after that.
You never know!
Best wishes for a smooth and successful SCT. Please keep us posted on how it goes.
Mike
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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: Diet during stem cell transplant recovery
Thanks to you, Paul, for posting the question and the rest of you for your informative replies. We are back down in Houston at MD Anderson where my husband will be getting his stem cell transplant in a couple of weeks. With all the things to think about, I completely forgot about his diet post transplant and what he can and cannot eat. It makes perfect sense to avoid yogurt and non-preservative foods, especially raw vegetables.
My husband is at his "ideal" weight right now so I am going to tell him to chow down while he can in order to put on a little more weight. He likes his steak medium rare - is that something to avoid?
My husband is at his "ideal" weight right now so I am going to tell him to chow down while he can in order to put on a little more weight. He likes his steak medium rare - is that something to avoid?
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Diet during stem cell transplant recovery
I was fortunate to only have nausea one day and no mouth sores (kept ice in my mouth during the procedure). What I found effective is to follow the manual the SCT team gives you. Don't deviate. They know what is best.
I kept containers of Ritz crackers with me at all times, ate canned fruit and chicken noodle soup, also craved steamed rice and scrambled eggs and dry toast. I only drank purified individual bottled water – Dasani – and still do, and my own throwaway plastic eating utensils. Hand sanitizer was my new friend.
I only lost 5 pounds and ate 3 meals a day, hungry or not. Oh, lots of Ensure. Ativan was taken a couple of times per day and highly encouraged by the staff. I am one year post transplant.
So, those are a few things that helped me. By the way, my husband can't cook, so you can understand this diet. We didn't eat out until Day 100 and early lunch only; took my bottled water and my plastic fork. I wore a mask until Day 100, but my only outings at that time was to the doctor for checkup and grocery store. Maybe I was overly cautious.
I kept containers of Ritz crackers with me at all times, ate canned fruit and chicken noodle soup, also craved steamed rice and scrambled eggs and dry toast. I only drank purified individual bottled water – Dasani – and still do, and my own throwaway plastic eating utensils. Hand sanitizer was my new friend.
I only lost 5 pounds and ate 3 meals a day, hungry or not. Oh, lots of Ensure. Ativan was taken a couple of times per day and highly encouraged by the staff. I am one year post transplant.
So, those are a few things that helped me. By the way, my husband can't cook, so you can understand this diet. We didn't eat out until Day 100 and early lunch only; took my bottled water and my plastic fork. I wore a mask until Day 100, but my only outings at that time was to the doctor for checkup and grocery store. Maybe I was overly cautious.
-
brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
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