Backstory: I have hodgkin's lymphoma. My initial treatment of radiation and chemo failed and I had an autologous stem cell transplant to reset my immune system by wiping out my bone marrow then receiving healthy stem cells which had been previously harvested from my blood to rebuild it.

The process results in a 70% cure rate. Unfortunately it was not effective for me, but after the transplant I was eligible to receive a new, "directed protein" chemo drug which was very effective against my disease. I have also gotten more radiation and am currently disease free.

The stem cell transplant consisted of taking stem cells out of my blood (by taking my blood out of my body and filtering it through a machine) then giving me a massive dose of chemo to kill all of my active bone marrow, then re infusing the stem cells back into my blood stream. I was isolated for about a month due to a lack of immune system.

AMA while I scrounge up some proof

link to my original AMA

look at my weird eye shortly after my transplant my immune system attacked my eyes, which caused some scar tissue so that now one of them doesn't dilate properly. If it happens to get worse I may have to have surgery on them.

I'm working on pictures

Comments: 49 • Responses: 21  • Date: 

baraqiyal13 karma

What was the total cost of treatment?

floralmuse20 karma

insurance paid for most of it. I was lucky to be insured at the time of my diagnosis. Close to half a million dollars.

didntmatterthefish4 karma

America's healthcare system is horrific.

sushi064-5 karma

Just wait until Obamacare...

floralmuse9 karma

Whatever. As someone with a pre existing condition I don't give a fuck if it cuts into my future employer's profit a bit. "Obamacare" for people like me means I cant be denied coverage in the future.

scoutycat8 karma

i have a buddy who's going through this right now, he's in isolation waiting for the transplant to take. What kinds of things were friends able to do that was helpful or much appreciated?

floralmuse11 karma

any kind of social interaction. You might not be able to visit (ask, they may let you in if you wear a mask and aren't sick) but text, skype, facebook, xbox live or steam, anything really. It's maddening not being able to do much or interact with people. My parents would take me on car rides when I started to get cabin fever, so maybe offer to drive him around somewhere scenic so he can feel some fresh air and not look at the same walls all day.

edit: best of luck to him recovering from transplant! I remember being so nervous waiting for the engraftment, then I got an "engraftment fever" which made me nervous that I had an infection. It's a nervewracking process, I hope he doesn't feel too anxious. Give him my username if he wants to message someone who has been through it.

scleitrim3 karma

What country are you in? Did you have to go somewhere specific for a stem cell transplant to be allowed? I understand that stem cell related topics are controversial so I just wonder if that effected your process. Glad to know you are disease free now!

floralmuse8 karma

I'm in America. The process used my own stem cells so it wasn't too controversial. Honestly most of the controversy is excessively stupid.

hidden3d3 karma

Can you see hidden 3D objects in Magic Eye pictures?

floralmuse2 karma

I haven't tried since the eye thing. Link me a 3d picture and I will report

Nevermind, found one. Yes, I can still see them.

hidden3d2 karma

(crossing fingers that you still can)

floralmuse1 karma

haha yes I can. What an amusing account. I enjoyed the squirrel picture.

icameforthecookies3 karma

How old are you? How is you life now that you have recovered? Any restrictions? Congrats on being a success story. Keep kicking @ss!

floralmuse6 karma

I am 26, was diagnosed when I was 23. Life is pretty good. I don't have a ton of restrictions right now (I just got the go ahead to go back to eating sushi yaaaaay) but I do have some complications from the treatments. Mainly I don't handle getting too hot or too cold very well. I have a handicap parking placard for the summer months because a short walk in 90 degree heat makes me feel like I'm going to faint. My eyes are kind of fucked up because my immune system attacked them so I'm afraid to wear contacts often these days. I also have to be careful not to get too much sun exposure as I'm extra sensitive to it.

icameforthecookies2 karma

What cause you to get checked out in the first place?

floralmuse3 karma

I had a lump near my collarbone

cadwellingtonsfinest2 karma

I also have hodgkin's lymphoma and just got my own auto transplant last month. Still haven't got a scan yet. What staging were you at when you went in to the transplant? My chemo before transplant was actually working well, but because mine was relapsed they still do a transplant. Did you get BEAM?

floralmuse2 karma

Iii don't remember. It was either BEAM or ICE. I know I had etopocide because I am allergic to it so they had to give me a massive dose of benadryl every day for me to tolerate it.

floralmuse2 karma

I was stage 2a

floralmuse1 karma

Also, best of luck! Fingers crossed for you

veloralie2 karma

Congratulations! My brother went through something very similar and it was heart breaking. I just have two questions: 1) has your life expectancy changed at all? 2) what was the most uplifting/supportive thing that someone did for you?

floralmuse2 karma

as far as life expectancy I don't really know. I have a higher risk for secondary cancers like leukemia and breast cancer but if no other disease springs up I would expect I have a reasonably long life to look forward to.

No single incident stands out in my mind, but I think finally going to see a psychologist (one who dealt with people with serious illnesses frequently) helped me cope a lot. Please people, if you need help get it. There is no shame in learning how to deal with your life, and if the first professional you see is a quack keep looking.

Miss-Omnibus2 karma

Knowing now through personal experience, would you in all honesty have elected to go through treatment (positive outcome aside) (congrats on remission btw).

floralmuse2 karma

Yes. I would have done the auto transplant even if there was just a slight chance it would have cured me. It sucked but was relatively safe. Transplants with another person's stem cells (allo) are less safe and that was one option after the auto failed (roughly 50/50). I became very depressed and ultimately decided not to do it at that juncture.

DestroyerofWords1 karma

Did you get really itchy during your transplant? My balls and scalp were unimaginably itchy during mine, and there was like a three or four day period where I basically couldn't sleep due to itchiness. Also, any problems with cataracts after your transplant? I finished mine back in March, and now I'm starting think I might be getting some small spots in my vision.

floralmuse1 karma

I don't remember itching, but I do get these weird dry patches of skin all over sometimes. My doctor never seems worried about it, and it's not unsightly. I had uveitis when my immune system attacked my eyes. No cataracts but if the uveitis comes back it could lead to glaucoma if I don't get surgery

dutreddit1 karma

floralmuse, I underwent 2 stem cell transplants last year. One was two different cord bloods and another was a Haploidentical from one of my parents.

How come you have had your immune system attack your eye? Is it Graft vs Host? I was under the impression that you didn't get GVHD with an Autologous transplant you didn't get that. Also why don't you try for a cord blood transplant? The matching isn't as strict as an adult unrelated donor?

floralmuse1 karma

Hi there. I'm not sure why my eyes got attacked. Neither are my doctors. Youre right, GVH shouldnt happen with my own cells so it wasn't that. My eye specialists said the eye thing happens sometimes to people with RA and sarcoidosis as well, so I think its just a symptom of a poorly functioning immune system. As far as my other symptoms I think they are all chemo side effects.

I felt the same way about support groups full of old people (or worse, children) last year, two years after my diagnosis, I got a psychologist who works in a rehab hospital who is actually very helpful unlike some others I've seen who just cooed and felt sorry for me. Also, one of my good friends was diagnosed with the same disease (strange coincidence) and we were able to be there for each other some. I also met a girl locally who has a chronic disorder that presents her with many of the same fears and challenges and we bonded quickly. All of those have been helpful for my mental state. Also, I'm not sure why nobody has talked about cord blood. My doc said since I didn't have siblings the best bet was a matched stranger, then a parent. Best of luck to you.

DildoSagginsss1 karma

I know I'm kinda late to this. But I was wondering how you even initiated the stem cell therapy in the first place? Who did you talk to? If anyone? The reason I ask is my cousin is in a very deep coma and is dying. There's severe brain damage and he may never wake up. Docs have no idea what's wrong. Tested for meningitis, encephalitis, etc. I'm basically grasping at straws trying to find something to save him. And no doctor here has the capability to try stem cells. Haven't even brought it up.

floralmuse1 karma

the transplant I had is pretty standard for people who have a relapse of my specific disease these days. I'm very sorry to hear about your cousin, and I'm afraid I don't know who you would get in contact with, or if stem cell therapy might help him.

moondog551 karma

Congratulations on your disease-free status! What was it like living in isolation for a month? How did you entertain yourself and what kind of food were you able to eat?

floralmuse4 karma

isolation sucked. I did everything during the day and was sent to my house with a portable iv so I had it better than some people, but it still sucked. I discovered reddit, read pretty much everything on, and watched a lot of tv. I made a few art projects as well.

Good question on the food. I was on a neutropenic (sp?) diet, which meant no eating anything that could have bacteria. It was a pretty big chore keeping up with what I could and couldn't eat, so tv dinners were a big feature. I also remember eating a lot of prepackaged lemon italian ice.

cookie-jar1 karma

Oh got, yes, isolation is the worst. I got so depressed I couldn't even use my iPad anymore, let alone turn on my computer. I did absolutely nothing all day except watching TV and was all grumpy and whiny until I finally felt better…

floralmuse1 karma

My parents kept asking if I wanted them to buy me an xbox game, but I had to use these old glasses during the transplant (we had forgotten that I wouldn't be able to wear contacts and I didn't have any current ones) and I couldn't really see well enough to play. I definitely had grumpy and whiny down on occasion. Towards the end I had ten days straight of migraines and I remember snapping at everyone, then apologizing.

doubleplushomophobic1 karma

How has it affected your daily life? (exercising, driving, working, guacamole-ing, whatever)

floralmuse2 karma

What stands out most is that I get tired fairly quickly. I can still exercise, and in fact pushing through 30 minutes on an elliptical was roughly equivalent to fighting for my quality of life for a while. The exercise gave me more general energy and helped regulate my sleep. My feet will go numb when I exert myself like that due to nerve damage.

I also don't handle hot and cold very well (I feel faint if I have to move about in high heat for too long). Also, I was never very good at remembering people's names, but now I have a lot of trouble remembering casual acquaintances. I remember people I was interested or care about, but for instance once I met a guy at his house for dinner with him and his wife and some friends, then asked him to introduce himself the next day in a new context.

guinnessmom1 karma

how were they able to extract diseased stem cells and resuse them as treatment. I thought the process of stem cell treatments was to give you healthy cells to start with.

floralmuse2 karma

Now I'm not exactly clear on the science but I asked this myself and I'll try to explain. My immune system does not recognize my hodgkin's cells as disease. My bone marrow is where my white blood cells are made. stem cells are basic cells that become bone marrow, but in their stem cell state they are not necessarily defective. When they took my blood out to collect stem cells the process only filtered out stem cells (which were more heavily present due to some injections I'd been given before). Mature cells were simply put back into my body at that time. The stem cells were healthy, the mature ones were defective.

The transplant was essentially a hard reset for my immune system. (Have you tried turning off and on again?) In many people this can fix the glitch and allow the white cells to recognize the cancer as disease and fight it. In my case it didn't

Irishslob0 karma

What are you looking forward to doing now or just in life?

floralmuse2 karma

Right now I'm halfway through my paralegal associates, will be moving back out of my parent's house in a week or two, and when my degree is done I plan to move to Asheville or Brooklyn.