Sucking on a bone?
January 31, 2010 8:18 PM Subscribe
What has your experience been with bone marrow transplants?
About 10 months ago I was diagnosed with ALL. My Oncologist regularly comments that I am his most atypical patient: After another bone marrow biopsy has shown me cancer free, the Doctor is at a loss for my lacking recovery. He has referred me to another Doctor for a bone marrow transplant.
It will be a couple of weeks before I am able to meet with this new Doctor (in a neighboring state) and in the meantime I've been searching for more information. However most of what I find is for donors. A previous question offered some good information. Unfortunately the Asker does not appear to have survived.
What I'm looking for is what were your experiences or those of your family/friends that have had a bone marrow transplant? What did you/they wish they had known before? What questions should I make sure to ask?
About 10 months ago I was diagnosed with ALL. My Oncologist regularly comments that I am his most atypical patient: After another bone marrow biopsy has shown me cancer free, the Doctor is at a loss for my lacking recovery. He has referred me to another Doctor for a bone marrow transplant.
It will be a couple of weeks before I am able to meet with this new Doctor (in a neighboring state) and in the meantime I've been searching for more information. However most of what I find is for donors. A previous question offered some good information. Unfortunately the Asker does not appear to have survived.
What I'm looking for is what were your experiences or those of your family/friends that have had a bone marrow transplant? What did you/they wish they had known before? What questions should I make sure to ask?
The transplant itself is actually entirely painless -- like a blood transfusion. However the weeks surrounding the transplant are a critical period when your immune system is not functioning and you are at risk for a variety of potential complications. I can't answer your specific questions as I've never been transplanted or had transplanted family, but I've taken care of hundreds of patients in the hospital during the transplant process (as a hospitalist and intensive care doc, not an oncologist), and can tell you that how folks do is highly variable.
My advice would be this: the transplant process is fairly involved and may require a long hospital stay, with good days and bad, ups and downs. Having the right mental attitude and perspective might be critical to coping with the experience. Learning not to sweat the small stuff, appreciating that a marathon is probably a better metaphor for the transplant than a sprint, and having a positive, fighting attitude would go a long way, if you ask me.
If there are any questions you think I can answer for you, I'm happy to.
posted by drpynchon at 9:18 PM on January 31, 2010 [2 favorites]
My advice would be this: the transplant process is fairly involved and may require a long hospital stay, with good days and bad, ups and downs. Having the right mental attitude and perspective might be critical to coping with the experience. Learning not to sweat the small stuff, appreciating that a marathon is probably a better metaphor for the transplant than a sprint, and having a positive, fighting attitude would go a long way, if you ask me.
If there are any questions you think I can answer for you, I'm happy to.
posted by drpynchon at 9:18 PM on January 31, 2010 [2 favorites]
After another bone marrow biopsy has shown me cancer free, the Doctor is at a loss for my lacking recovery.
I don't understand this sentence. I assume you mean that you do still have leukemia.
I'm a physician, but I haven't been involved with a bone marrow transplant case since I was in training, over 15 years ago. While the majority of BMT patients do well, some fraction have major complications. Those few are the sickest people ever. Be sure to ask the transplant doctor what percentage of patients have major problems (I wouldn't even try to guess). Granted, if you have A.L.L. that's resisted standard chemo, a BMT is probably necessary.
Ask the guy a lot of questions.
posted by neuron at 10:21 PM on January 31, 2010
I don't understand this sentence. I assume you mean that you do still have leukemia.
I'm a physician, but I haven't been involved with a bone marrow transplant case since I was in training, over 15 years ago. While the majority of BMT patients do well, some fraction have major complications. Those few are the sickest people ever. Be sure to ask the transplant doctor what percentage of patients have major problems (I wouldn't even try to guess). Granted, if you have A.L.L. that's resisted standard chemo, a BMT is probably necessary.
Ask the guy a lot of questions.
posted by neuron at 10:21 PM on January 31, 2010
Best answer: I was hoping more family members and former patients would respond for you. I'm an inpatient oncology RN who works on a hematology floor that includes stem cell transplant. I've watched and assisted a lot of people and families go through it. You should check the family patient boards of the Lymphoma / Leukemia Society, and the big cancer hospitals like MD Anderson, Sloan Kettering, and Dana Farber for experiences from the patient family viewpoint. Sorry I'm not 100% if SK and DF have boards. But I've heard patients/family say they got good info from LLS's and MDA's boards.
A word of warning about online information. You're probably already savvy to this, but I must say it - there is so much BS out there about cures so please beware. As an oncology nurse there is nothing more distressing to see than a patient who had a good chance towards remission leave the standard treatment models for alternative care then come back later, even sicker, and hope for an impossible miracle, and usually die. There is a warm place in hell for whoever it is that is pushing high doses of Vitamin C lately. Some of these things do make people feel better. They make people look better. But don't be seduced. Cancer will take full advantage.
Stuff outside of standard oncology care should be considered COLLABORATIVE not alternative and should be discussed in full with your oncologist. Some herbs and vitamins that may make you feel better between treatments can interfere with chemos so your doctor needs to know about it. Massage and accu-puncture can help with side effects but may not be something you can do if your blood counts are low so always discuss with your doctor first. I want to stress I'm not against collaborative care, I encourage it - but I do want to stress the importance of communicating with the doctor and being wary of people who can be malevolent or well-meaning in their advice to you.
..........................
Now - things I would want to know beforehand:
How many stem cell transplants does this hospital do? While smaller places can give great care you want to be at a place that has some experience doing this if you can, especially if you're refractory or having any sort of atypical response to treatment. Sounds like your current doctor recognizes this hence the out of state referral.
What sort of support does the hospital have for the patient and family? Is there a community of cancer patients locally or online that they can refer you to? What sort of patient education is here for me?
What can I do to prevent infections and WHEN do I need to worry about this the most? Your immune system's ability to fight infections will change. You will learn more about this throughout your care.
How long may this take? Recognize this is a hard question for doctors to answer because there is no answer - it may take some months, it may take more than a year - but you need some sort of idea of what sort of commitment you may need to make for this part of your life.
Are some of the nurses who will be taking care of me certified for oncology care? It doesn't have be all of them but ONS certification and/or chemo/biotherapy course education can make a difference in your nursing care. A staff that has some certified nurses shows a commitment to oncology care and values current education towards the best care.
..................................
That's all I can think of at this point. It seems to me that there's no way to know everything at first. Your education about your cancer and the treatments is a gradual one that will continue, as you're probably well aware at this point. As things progress, new questions will come up.
For now set up yourself to cope as best you can.
Being positive really can make a huge difference. Hospitals - even the best of them - can be boring, impersonal, invasive places. Things get delayed for reasons you're not told, that don't involve you, for what may appear to be no reason. People that "make the best of it" or have a "go with the flow" attitude seem to have better days then the ones who are frustrated and irritable. If you do get frustrated and irritable - don't feel bad about it because it may happen. Forgive yourself and those around you and start fresh with a better frame of mind when you can.
Depression or depression-like symptoms and feelings are common with cancer. Learn how to recognize this in yourself and when and where to ask for help.
Find out something you can do to pass time in a manner you like. Examples that I've seen some patients do: reading, listening to podcasts or music, gaming, blogging. One patient and his girlfriend really got into Little House on the Prairie reruns. It was their thing that they escaped to while he was in treatment. Another patient played World of Warcraft which really helped distract him in a positive way. An Xbox or DVD player can usually be hooked up to the hospital tv if you're into that.
Learn and ask about symptom management. People can do better if they try to stay ahead of some of the more common side effects. Nausea for example - there are many good anti-nausea meds out there. Ask for them and take them before you throw up.
Find the people in your life that can be the best support for you. The ones that know NOW is not about them it's about you and your needs. Have people that will go to the doctor appointments with you so they can hear everything too. It's hard to hear some of the things the doctor says for many reasons: they may slip into lingo you're not familiar with yet, or even just the volume of information can be massive. It's good to have someone else there who can also ask questions or clarify. If you don't have those people in your life that's okay - just know you'll need to then get that support from your healthcare team - nurses, social workers, doctors, chaplain whoever. Figure out what you need from those around you and then tell them what they can do to help you.
Know that many people survive this. More people are surviving cancer then ever before. Take each day one day at a time. Suck the marrow out of life right now. Best of luck to you.
posted by dog food sugar at 8:15 AM on February 2, 2010 [2 favorites]
A word of warning about online information. You're probably already savvy to this, but I must say it - there is so much BS out there about cures so please beware. As an oncology nurse there is nothing more distressing to see than a patient who had a good chance towards remission leave the standard treatment models for alternative care then come back later, even sicker, and hope for an impossible miracle, and usually die. There is a warm place in hell for whoever it is that is pushing high doses of Vitamin C lately. Some of these things do make people feel better. They make people look better. But don't be seduced. Cancer will take full advantage.
Stuff outside of standard oncology care should be considered COLLABORATIVE not alternative and should be discussed in full with your oncologist. Some herbs and vitamins that may make you feel better between treatments can interfere with chemos so your doctor needs to know about it. Massage and accu-puncture can help with side effects but may not be something you can do if your blood counts are low so always discuss with your doctor first. I want to stress I'm not against collaborative care, I encourage it - but I do want to stress the importance of communicating with the doctor and being wary of people who can be malevolent or well-meaning in their advice to you.
..........................
Now - things I would want to know beforehand:
How many stem cell transplants does this hospital do? While smaller places can give great care you want to be at a place that has some experience doing this if you can, especially if you're refractory or having any sort of atypical response to treatment. Sounds like your current doctor recognizes this hence the out of state referral.
What sort of support does the hospital have for the patient and family? Is there a community of cancer patients locally or online that they can refer you to? What sort of patient education is here for me?
What can I do to prevent infections and WHEN do I need to worry about this the most? Your immune system's ability to fight infections will change. You will learn more about this throughout your care.
How long may this take? Recognize this is a hard question for doctors to answer because there is no answer - it may take some months, it may take more than a year - but you need some sort of idea of what sort of commitment you may need to make for this part of your life.
Are some of the nurses who will be taking care of me certified for oncology care? It doesn't have be all of them but ONS certification and/or chemo/biotherapy course education can make a difference in your nursing care. A staff that has some certified nurses shows a commitment to oncology care and values current education towards the best care.
..................................
That's all I can think of at this point. It seems to me that there's no way to know everything at first. Your education about your cancer and the treatments is a gradual one that will continue, as you're probably well aware at this point. As things progress, new questions will come up.
For now set up yourself to cope as best you can.
Being positive really can make a huge difference. Hospitals - even the best of them - can be boring, impersonal, invasive places. Things get delayed for reasons you're not told, that don't involve you, for what may appear to be no reason. People that "make the best of it" or have a "go with the flow" attitude seem to have better days then the ones who are frustrated and irritable. If you do get frustrated and irritable - don't feel bad about it because it may happen. Forgive yourself and those around you and start fresh with a better frame of mind when you can.
Depression or depression-like symptoms and feelings are common with cancer. Learn how to recognize this in yourself and when and where to ask for help.
Find out something you can do to pass time in a manner you like. Examples that I've seen some patients do: reading, listening to podcasts or music, gaming, blogging. One patient and his girlfriend really got into Little House on the Prairie reruns. It was their thing that they escaped to while he was in treatment. Another patient played World of Warcraft which really helped distract him in a positive way. An Xbox or DVD player can usually be hooked up to the hospital tv if you're into that.
Learn and ask about symptom management. People can do better if they try to stay ahead of some of the more common side effects. Nausea for example - there are many good anti-nausea meds out there. Ask for them and take them before you throw up.
Find the people in your life that can be the best support for you. The ones that know NOW is not about them it's about you and your needs. Have people that will go to the doctor appointments with you so they can hear everything too. It's hard to hear some of the things the doctor says for many reasons: they may slip into lingo you're not familiar with yet, or even just the volume of information can be massive. It's good to have someone else there who can also ask questions or clarify. If you don't have those people in your life that's okay - just know you'll need to then get that support from your healthcare team - nurses, social workers, doctors, chaplain whoever. Figure out what you need from those around you and then tell them what they can do to help you.
Know that many people survive this. More people are surviving cancer then ever before. Take each day one day at a time. Suck the marrow out of life right now. Best of luck to you.
posted by dog food sugar at 8:15 AM on February 2, 2010 [2 favorites]
Here's some resources:
Advances in Stem Cell Transplants . An interview between two leukemia patients (one ALL) who went through SCT and a SCT oncologist. Download or listen to the audio or you can read the transcript. An MD Anderson publication (hence some MDA adverts in the audio - but the conversation is a good one - full of lots of SCT intro info).
National Cancer Institute Fact Sheet for BMT and PPBSCT.
Leukemia & Lymphoma Society Stem Cell Transplantation booklet (link includes link to PDF of the entire booklet, link to local chapters of LLS where you can get a free copy).
posted by dog food sugar at 9:28 AM on February 2, 2010
Advances in Stem Cell Transplants . An interview between two leukemia patients (one ALL) who went through SCT and a SCT oncologist. Download or listen to the audio or you can read the transcript. An MD Anderson publication (hence some MDA adverts in the audio - but the conversation is a good one - full of lots of SCT intro info).
National Cancer Institute Fact Sheet for BMT and PPBSCT.
Leukemia & Lymphoma Society Stem Cell Transplantation booklet (link includes link to PDF of the entire booklet, link to local chapters of LLS where you can get a free copy).
posted by dog food sugar at 9:28 AM on February 2, 2010
YT conversation between two hematology docs from HemOnc Today that may help you familiarize yourself with some of the language hem docs use.
Part 1
Part 2
Bone Marrow Transplantation Concerns Pediatric BMT doc talks about engrafting and some problems with that. It's pedi centered but has good general info imho.
YT carpyeditor discusses his SCT on day+6 (SCT day is "day 0". The days before SCT count down to day 0: ie. day-6, day-5, -4,-3,-2,-1, day 0. Then after SCT day you count up: day +1, +2+3...). He does a great job of describing the procedure and some of the general waiting, boredom, side effects that patients experience pre and post SCT.
posted by dog food sugar at 10:20 AM on February 2, 2010
Part 1
Part 2
Bone Marrow Transplantation Concerns Pediatric BMT doc talks about engrafting and some problems with that. It's pedi centered but has good general info imho.
YT carpyeditor discusses his SCT on day+6 (SCT day is "day 0". The days before SCT count down to day 0: ie. day-6, day-5, -4,-3,-2,-1, day 0. Then after SCT day you count up: day +1, +2+3...). He does a great job of describing the procedure and some of the general waiting, boredom, side effects that patients experience pre and post SCT.
posted by dog food sugar at 10:20 AM on February 2, 2010
This thread is closed to new comments.
I believe it is rather painful, but I'm sure you knew that. And it's worth it if it cures you.
posted by DMan at 9:00 PM on January 31, 2010