Hi, everyone, you're reading my first post here on this lovely site. ;] That being said, I'm going to jump right into my question/s/what have you. I am currently working on a novel in which one of the main characters suffers from acute lymphoblastic leukemia, ALL, and undergoes a bone marrow transplant. He goes into remission, though after two years, suffers a relapse. Only this time, the cancer has spread to his central nervous system, more specifically his spinal cord. Now, I've done months worth of research, so I know everything I could possibly hope to know about the "before" situation. What I'm looking for some help with is the "after". I've read that once ALL has spread to the spinal cord, chances of a bone marrow transplant leading to a successful remission are slim to none-- is this accurate? (For my story, I DO plan on having it ruled out as an option a second time for this reason, but I'd like to have my facts right.) If it is in fact true, what other sort of treatments would the patient undergo? I'm assuming more chemotherapy, though would it be more intensive? How often? (I'm aware that it would be different for every patient, but a basic idea would help.) How much chemotherapy CAN a patient endure a week? A day? How much of a chance of survival does a patient have once the cancer has reached the central nervous system? And what if they refuse any sort of chemo? What can an ALL patient expect to endure once the cancer has reached the central nervous system, and they refuse any treatment? And oh, I just thought of another-- going back to "before", what does a patient do while in remission? Are they still administered some sort of chemotherapy? Or another sort of treatment/medication? How often do they get check-ups? I appreciate any help anyone can give me, thank you. Colby
I don't have the answers to your question, but I would suggest that that might be the norm on a writing site. The information you're after is particularly specific, and my recommendation would be to make contact with a doctor and ask them the questions. In my experience, people tend to be very helpful if you approach them as a writer doing research for a story.
Thanks for the input, Banzai. I've actually attempted many times contacting some local oncologists, unfortunately I've been unlucky each time for various reasons. I'm still making calls though, and visiting hospitals in hopes of setting up a meeting with one or catching them for a few quick questions, though I figured in the mean time maybe someone around here could have a few answers I might need. :]
Have you tried contacting a local GP (or whatever they're called in the US...). Even if they don't know the answers, they might be able to get an oncologist they know personally to give you the time of day.
GP... as in general practitioner? (I had to google that, haha.) I'm not sure exactly what the equivalent of one would be here over in the US, but with that said, I HAVE contacted hospitals in general, as well as cancer centers more particularly. As I've said, I've been unlucky thus far, but I'm still trying! It's just a matter of timing and luck, it seems. And I have to thank you yet again for your advice, I appreciate it!
Although you are looking for this information for writing purposes, you would be better served looking for this information on medical websites and forums, especially those that focus on cancer and cancer patients. As you are undoubtedly aware, the information you are looking for is extremely specific. Asking the question here is akin to standing in the hallway of a liberal arts college, and stopping sytudents as they pass by if they have any information on the topic. I don't know why you have had difficulties getting answers from oncologists and cancer survivors, but I believe your efforts would be better served by patient but polite persistence. Have your questions prepared in advance, and be ready to listen to the responses without any preconceptions.
Cog is right, you should check medical websites, but I can tell you a little. My mother-in-law died of cancer last may, and I have several close friends undergoing treatment currently. Chemo for my mother-in-law her was done every 6 weeks or so, although the schedule changed a lot, and depended on how she was doing. Every once in a while they would give her a few weeks off. Chemo makes it unbearable for many patients to eat, because it can make them nauseous and extremely sensitive to hot and cold items. They often lose a great deal of weight, and some have problems with shaking. Some patients have memory loss and days that they simply cannot get out of bed. Hair loss is common with many patients, and so is general weakness. In some of the more sever episodes with my mother-in-law, she had seizures and threw up bile. There are different types of chemo treatments, and they all have different side-effects and treatment regiments. Additionally, everyone's systems respond differently, so I would check with several different patients if they will let you ask these questions. It can be really hard for some of them to talk about, and it may take patience and understanding. Remission means that they usually go off treatment. First, for a few weeks as a trial, and get frequent check-ups. After that, the appointments are set farther apart if everything is going well, but they usually go at least every few months in my experience. You asked what happens when they stop getting treatment... It differs, but it can be very very hard. When they discovered that chemo stopped working for my mother-in-law, she went off of her treatment to make her last bit of time more bearable. Her condition worsened very quickly, and within a few weeks she was doing in-home hospice care. She began to get more confused that the treatment made her, she stopped being able to walk, and she eventually was confined to her bed. It was 6 weeks after they took her off the chemo until she passed, which was a very short time. This can differ, as with everything else, but it can be very quick or semi-slow before patients die. There's a lot of pain with cancer in the later stages after chemo, and it's almost unbearable for some patients, so pain relief and comfort are key. The family has a lot of work to do, because the patients stop being able to eat or drink or move. Mostly it's about waiting for the patient and the family, and just making the process as easy as possible. If have more questions pm me, and I'd be happy to help you out. If you need hospice information, a visit to a hospice website or an interview with a worker might be in order.
yes, cog is right! all you need do is google for sites dealing with that subject (lymphoblastic leukemia prognosis) and support groups for those who suffer from it (lymphoblastic leukemia support groups) there you'll get first-hand info, not just uninformed guesses and second-hand feedback in re one patient...
First off, thanks to EVERYONE for their replies. I appreciate every one of them. As I've stated before, I'm very well aware that my attempts to gain some knowledge here at the forum on such very specific questions is a shot in the dark, and I'd be better off doing research elsewhere; I HAVE been doing that. For a good deal of months, in fact, and I simply thought that perhaps someone around here would have some first-hand knowledge on the subject, if even just a little grain of it. I'm not expecting my questions to get answered, let alone perfectly descriptive answers, I simply figure it couldn't hurt to have my questions floating around one more place. With that being said, lovely, thank you SO MUCH for your input. I am aware of how difficult it must be for someone to discuss first-hand what they encountered in this situation, and I can't thank you enough for actually giving me the information you did. And I appreciate you opening your personal messaging for me to ask more questions, I do believe I will be taking advantage of that at some point in the near future. Thanks again. And mammamaia, thank you for the links! In all these months, I never thought to check support groups.
better late, than never!... they're really the best place to get first-hand info on anything medical...
I can definitely help here. I have personal experience with spinal cord issues. I had a massive tumor on my spinal cord a few years back. It was benign so it didn't spread beyond there. It was nightmarish though. If you want more info about what I went through physically and otherwise I can tell you over private message on here. It's very personal to me. I have no problem sharing for something like this though. Also I had a dear friend from a cancer support site who had Ewing's Sarcoma that spread to his brain. So I know some of what goes on with cancer spreading to the brain. It's hard for me to talk about it a lot. He died when he was seventeen after a relapse. So I know a lot about the emotional and physical affects of neurological tumors.
