Cancer sucks!
June 17, 2009 6:42 PM   Subscribe

It looks like my leukemia may have returned (AML) and my doctor said earlier that if this happened, I'm looking at a bone marrow transplant. Any experience? 24, female, otherwise healthy (you know, besides the cancer).

For any of you praying folk, do you mind obliging? Thanks.
posted by litterateur to Health & Fitness (35 answers total) 5 users marked this as a favorite
I have no experience (other than with a loved one who had leukemia) but I would be happy to include you in my thoughts and prayers. I wish you all the wellness in the world.
posted by pinky at 6:55 PM on June 17, 2009

Best answer: First, I'm so sorry to hear about your relapse. I'd be happy to answer your questions by MeMail if you'd like. I also know a good transplant doc near where you live.

Since you asked out loud, I'll provide some answers from the transplant physician's perspective. I'm sorry, in advance, if this sounds so clinical and brutal, but I believe that people should go into transplant with both eyes wide open.

Transplant is rough. It's one of the most brutal things that we (oncologists) do to patients. It is very risky, but for patients with relapsed AML, it's your only real shot at curative therapy. For AML, you will need likely need to undergo complete ablation of your bone marrow in an attempt to rid your body of as much of the leukemia as possible (that is, a fully myeloablative transplant). Depending on where you are, the chemo you'll get for transplant - the "conditioning regimen" - is significantly more toxic than what you got for your first-line therapy, as a result of higher doses, and the likely combination with total body irradiation (TBI). Your conditioning regimen will depend on where you're treated and what subtype of AML you have, so YMMV.

Following the conditioning +/- TBI, you'll get your infusion of stem cells. It's pretty uneventful (which is good). Bone marrow looks like a blood transfusion. Around the time you get your cells you'll be started on immunosuppressants like cyclosporine and methylprednisolone, or a combination like sirolimus/tacrolimus. If you get steroids, you'll probably get puffy (Cushingoid). If you get cyclosporine, you may get hairy (unibrow, increased facial hair). You may get low doses of methotrexate to prevent graft-versus-host disease. No matter what, you'll be profoundly immune suppressed and will be susceptible to viral, fungal and bacterial infections. As a result, you will need to be isolated for a long time. A very long time. If you're undergoing a fully myeloablative transplant, there's a good chance you could be inpatient for a few weeks, until your blood counts come back. As you can imagine, stir-craziness can be an issue. While you're absolute neutrophil count (ANC) is zero, you'll probably have pretty bad mucositis (mouth sores, esophageal sores, loose stools, upset stomach). Obviously, you'll feel really lousy due to anemia and post-radiation effects. But once you engraft (10-14 days to start engrafting following infusion of marrow), you'll start to feel better.

Your immunesuppressant drugs will need to be weaned off over time, so you'll be under constant care and really won't be able to have much of a regular life since you'll be so vulnerable to viruses (especially bad ones like varicella, adenovirus, parainfluenza, etc.). I would strongly recommend having as much support as you can muster from friends and family.

Most of the patients that I helped take through transplant said the same thing: if they could've been asleep/anesthetized for the whole thing, they would've. In your favor is the fact that you're young and likely (playing the odds) have a healthy liver and kidneys.

Again, I could go on and on for pages, so it might be easier if you have focused questions to write them down and run them by your doctor. The Leukemia and Lymphoma Society likely could hook you up with support groups so that you could perhaps find patients your age to speak to. Again, feel free to drop me specific questions - even though I am not your doctor, I'd be happy to address general issues with you. And most importantly, have a positive "I can beat this" attitude. Transplant will strip away a lot from you - hair, sense of taste, social contact, energy - but it's really up to you whether or not it takes away your hope. Don't let it. And best of luck.
posted by scblackman at 7:06 PM on June 17, 2009 [20 favorites]

I certainly DO NOT mind obliging. You shall have all the prayers, positive thoughts, love and good will I can muster sent your way. Stay strong, and know that you have lots of support.
posted by Rewind at 7:10 PM on June 17, 2009

I am not a praying man, but I am a betting man. My money is on YOU. Keep up the positive attitude, get good honest advice like scblackman gives above and I bet you will come through this. Good luck.
posted by JohnnyGunn at 7:20 PM on June 17, 2009

You are in my thoughts and prayers. I wish you all the love and support in the world - you can beat this!
posted by Jubey at 7:22 PM on June 17, 2009

Thoughts, prayers, fingers crossed.
posted by runningwithscissors at 7:24 PM on June 17, 2009

Best answer: My open heart and endless love are with you. I lost a child to cancer this year, and have those who fight her battle in the depths of my heart. Pride, and love, to you for fighting, and if you ever want an open ear, please feel welcome to turn to me.

"Cancer sucks," - truer words have never been spoken. I'm terribly sorry. I encourage all Mefite's to follow The Pink Superhero's suggestion to donate blood and/or bone marrow; registration fees are currently potentially waived.
posted by bunnycup at 7:25 PM on June 17, 2009

No, I don't mind. Good luck, girl, we're rooting for you.
posted by txvtchick at 7:27 PM on June 17, 2009

Best answer: I'm so sorry to hear what you're going through.

Other mefites should know about the National Bone Marrow Registry. I just sent off for a kit after I found out a good friend of mines kid has leukemia and I'm gonna challenge you guys to do the same. You could be the match someone like litterateur is looking for.
posted by julie_of_the_jungle at 7:41 PM on June 17, 2009 [5 favorites]

Good luck, and I will be praying/thinking the good thoughts for you.
posted by Issithe at 7:51 PM on June 17, 2009

posted by St. Alia of the Bunnies at 7:53 PM on June 17, 2009

sending you lots of healing vibes!
posted by sucre at 8:10 PM on June 17, 2009

Best answer: You will be in our thoughts, litterateur!!

Also, 2nding the posts about marrow/blood donation. Until June 22, joining the National Bone Marrow Registry is free. There is no better time to sign up than right now.
posted by ishotjr at 8:17 PM on June 17, 2009 [1 favorite]

No personal experience as a recipient, but I was on the short list of possible donors for a person in need of a donation and became very familiar with how hard it was for the person in need of the donation. Please, please, please absolutely do not feel guilty taking bone marrow from donors. I know the person I was dealing with was practically sick over the idea that people were going to be missing work, being sore, etc. But, really, please, please, please do not worry about that. Absolutely not. These people signed up to help YOU, so please do not worry about them. You worry about yourself and being healthy and happy!

That being said, absolutely do not go to see the movie "My Sister's Keeper"
posted by banannafish at 8:18 PM on June 17, 2009

Sending positive thoughts and healing vibes your way!! I used to work with a woman whose 19-year-old daughter underwent a bone marrow transplant, and she suffered from a lot of the side effects SCBlackman mentioned (extreme boredom from the isolation, mouth ulcers, weight loss, fatigue, shortness of breath for weeks after returning home, etc.). However, that was back in 1995, and the last I heard the daughter got her degree, got married and now works as an L&D nurse.
posted by Oriole Adams at 8:44 PM on June 17, 2009 [1 favorite]

I don't mind at all, you'll certainly be in my prayers.
posted by Solon and Thanks at 9:04 PM on June 17, 2009

I also signed up for the Bone Marrow Registry - it's very easy! At first I was nervous because I wasn't sure how it works, or how much pain is involved, but there's lots of information to dispel myths on the website linked above. I'd encourage any of you lurkers to check it out.
posted by Solon and Thanks at 9:41 PM on June 17, 2009

My screwed-up L5 disc says no donating bone marrow for me, but I wish you all the best, litterateur, and would urge other MeFites to take up my slack and enter the registry.
posted by fairytale of los angeles at 10:18 PM on June 17, 2009

Response by poster: Thanks so much, everyone! I know it's never a good time to relapse, but it just seems especially lousy now. I had just finished my last chemo treatment three weeks ago, and my immune system finally kicked back in a week ago Sunday. It seemed like I was finished.

To add further insult to injury, I had finally moved back to my college town (from my parents' home) a mere four hours before my oncologist called to tell me the news. I even had things fall into place for a housing situation for the rest of the year, as my original plan was to move out of the state in January.

If anything, however, I have the most amazing support system in family, friends, and acquaintences. I have faith in an all-powerful God. I have hope. I have trust in my doctors.

But it doesn't make this suck any less.
posted by litterateur at 12:12 AM on June 18, 2009

I'm so sorry about your news. I just joined the donor register in the UK as a result of your post. You really are in my thoughts - stay strong.
posted by katiecat at 2:34 AM on June 18, 2009

Best answer: I'm sorry to hear your news litterateur. I can't offer any information beyond what scblackman has already posted, so i'll just wish you the very best of luck and hope that your family and friends will help to keep your spirits high during this fight!

British people should check out the Anthony Nolan Trust, a charity that fronts the British bone marrow registry. Getting on the database is simple - look at their website for details, or just give a tiny extra sample next time you donate blood.

A family member of mine donated bone marrow, and it's nothing to worry about. The most common method is for you to take a drug that encourages your stem cells to reroduce and release their offspring into your bloodstream. The drug is actually a hormone that you make naturally when you're sick (specifically, GM-CSF), so the only side effect is feeling for a few days like you're about to have a cold. The actual donation is done by taking blood, filtering it to remove the cells they need then giving the blood back to you. My relative said it felt just like giving blood except it took longer - a couple of hours sitting/lying in bed getting bored and watching a film.

On the rare off-chance that this method doesn't work, they ask you to donate by extracting cells from bone marrow directly. My relative needed to do this (we have some weird famililal quirk that makes our stem cells agorophobic, or something); it left her with a sore lower back for a few days, but she was happily back walking around all day in work within a week.

So you might get to save a life, it's a minor procedure and, unlike our wacky American cousins who get paid for giving blood but have to pay to donate bone marrow, it's always free to sign up.
posted by metaBugs at 4:15 AM on June 18, 2009

You are in my prayers dear. :)
posted by LittleMissItneg at 4:18 AM on June 18, 2009

Best answer: Hey, wow. I'm terribly sorry to hear all of that. I'm hoping you have the best experience possible and come out strong.

Having worked in nutrition at a cancer hospital, and specifically with people getting bone marrow transplants, I can tell you that they'll want you to be on a low-microbial diet for a while. If you haven't already experienced this, it's basically no raw veggies, no raw fruits (except those that you peel, like bananas and oranges), try to avoid spices like pepper, and ensure everything is well-cooked, just to reduce your chances of picking up any germs from the food. In my experience, it's not radically different from regular hospital food. There's a .pdf here that will give you an idea of the details.

Your mouth might get sore from mucositis, and your digestion upset, and you'll understandably have trouble eating. Anyway, if that's the case, don't turn down tube-feeding if it's offered -- it mightn't seem very pleasant, but it can take a lot of the stress and pressure off when you just don't feel like eating. And, naturally, keeping your nutrition status and weight healthy is of critical importance while you're healing. Popsicles are good.

While you're feeling ill, you might want to avoid any all-time favourite foods, because they might not taste the same anyway, and you might pick up negative associations to them that will persist later. But you probably know all that, given your experience with chemo.

At any rate, very best of luck. I'm rooting for you.
posted by peggynature at 6:56 AM on June 18, 2009

litterateur, you have an amazing attitude. Metafilter is an incredible community because of people like you. Your bravery, love, and strength are inspiring.
posted by satori_movement at 7:37 AM on June 18, 2009

litterateur, you're in my prayers too. Get well, you will get through this.

Thanks julie_of_the_jungle, I was on the UK register, but the US one is more applicable now I'm living here. I signed up.
posted by arcticseal at 9:35 AM on June 18, 2009

Best answer: You know, it may be worth leveraging the MetaFilter community to do a virtual bone marrow drive. Could make for an interesting thing for Projects. Set up a page with links to various countries marrow registries, and/or places to sign up. Set up some type of "I signed up" button to help keep track ... get the mods to put something on the sidebar ... maybe a MetaFilter Meetup at the local blood bank?

Anyone want to try to move this forward? I'd be happy to help.
posted by scblackman at 12:25 PM on June 18, 2009

Also, having mentioned GM-CSF above: I've just noticed that if you google for side-effects it turns up pages describing the side effects expected for cancer patients when they're given a really high, sustained dose as part of a treatment to promote their immune systems. At the doses you'd get as a donor, we really are just in the region of "I feel like I'm getting a nasty cold" for a few days.

scbalckman - Anyone want to try to move this forward? I'd be happy to help.

This is a great idea. I'm still kindof a n00b here* and am too poor to bribe the mods, but I'd lend whatever help I can. I've persuaded a handful of people to sign up in the past, but it'd be great to be part of something that gets a big bunch of new registrants.

*I'm aware that the cool kidz aren't saying that any more. I find it pleasingly retro.
posted by metaBugs at 1:28 PM on June 18, 2009

Response by poster: I think that's a wonderful idea, scblackman! I'm pretty new here, too, so I really don't know the proper etiquette as to how to set something like this up. Would it be an appropriate question for MetaTalk perhaps?

Thank you, again, everyone, for your thoughts and prayers, as well as those of you who have signed up to become possible donors.

I got the phone call from my oncologist today, but he basically told me what he told my mom last night, which is to say, nothing I already didn't know. He is talking to bone marrow transplant doctors in the Denver area, though, in preparation for what seems to be the case. Hopefully, we'll get a definitive answer by the end of the week, or the beginning of next week and go from there.

I will continue to keep you all updated.
posted by litterateur at 1:57 PM on June 18, 2009

Best answer: The Anthony Nolan Trust ask for volunteers to host a recruitment clinic. If we can get enough UK-based members in the same place at one time, they might come to us. I personally promise to supply everyone involved with delicious cake if such an event ever comes to pass.

I don't know what their minimum number of people is for something like that. I suspect it'll be more than the we can expect to turn up to a meetup, but I'll give them a call tomorrow to find out whether it's even remotely plausible. If not, getting people to register their intent then tick themselves off the list when they've found a local event to get to is still a perfectly workable plan.

Would it be an appropriate question for MetaTalk perhaps?
I'll brave the mods and post a question to the Grey.

Best of luck litterateur. I'm not the praying type, but you'll be in my thoughts.
posted by metaBugs at 2:08 PM on June 18, 2009

FWIW, I emailed the mods and they said that if we put together a website to point MeFites to blood banks for entry into the bone marrow registry, and a way to track it, etc etc, that they'd put it on the sidebar and MeTa.

Any web-savvy volunteers with a little extra server space interested in helping build/host such a site? Something like the MeFi Fitness Challenge .... but with registering for being a marrow donor.
posted by scblackman at 2:18 PM on June 18, 2009

scb - awesome stuff. I'm a slowpoke, so have just posted a suggestion to MetaTalk.

Sadly I lack the l33t skills to build a suitable website, but I'm sure there'll be some volunteers along soon. Maybe it'd help to ask across in Talk and/or put it up as a question on Ask?
posted by metaBugs at 2:56 PM on June 18, 2009

Best answer: As part of my job I do Bone Marrow Engraftment studies, to determine the percentage of donor and recipient cells in the blood, after a transplant. This study is done about once a month for the first six months, and then once a year.

I want you to know that there are several patients that I have followed for at least nine years (I started doing this in 2000), survivors well past the five year mark. I tend to get attached to those patients, even if I do not know their history or situation, and I rejoice when the results are good.

My thoughts are with you, and I hope that the lab tech who will follow your transplant will cheer for you after every good results for many years.
posted by francesca too at 6:01 PM on June 18, 2009

Best answer: For what it's worth, I work at the National Marrow Donor Program, and am responsible for the online registration site. Thanks for registering everyone! If you miss this weekend's end of free registration for our ongoing "Marrowthon", please check back at the beginning of July, when we should be providing fully-funded registration again (i.e., free). Of course, you can always register or give donations. We especially need people of minority descent, so spread the word. As Killick said in the MetaTalk thread, the donation process is not the biggest of deals, and there are really only a few times when you can be asked to save a person's life.

Litterateur, if you're looking for more information, please call our Office of Patient Advocacy at 1 (888) 999-6743, there are a lot of people that can help you with what you're going through. We do a lot of patient-directed outreach, and we have a lot of great information that can be sent to you, as well as many resources available on our website.

Good luck, my thoughts are with you as well.
posted by Read at 10:02 PM on June 18, 2009 [1 favorite]

Best answer: I am a nurse practitioner caring for patients after stem cell transplant. SBlackman hit many important issues. Something I would add is the very real possibility of graft vs host disease, even with the current GVH prevention regimens. Having a stem cell transplant can be life saving, but the new life may come with a whole new set of short term to even chronic problems. Many of my patients tell me that they wish they had been better prepared for this new life. Not that it is necessarily helpful to dwell on the down sides of this, but that there is value in a truly informed understanding. I would recommend if possible to get in touch with people who have been through a transplant. I believe the Leukemia and Lymphoma Society or the NMDP could help in that regard. Feel free to MeMail me as well if I can help with other questions.
posted by peeps! at 9:46 PM on June 19, 2009

Response by poster: I'm tired of typing this out, so for an update, check out my CaringBridge site. Thanks again, everyone, for your thoughts and prayers!
posted by litterateur at 11:22 AM on June 23, 2009

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