Transplant questions+ is it worth it?

[Mel L]

Hi all, I'm new to the forum. I'm Mel, and I'll be 21 next month (hooray!).

I was diagnosed with Aplastic Anemia when I was 14. There was talk of a transplant then, but I flat-out refused and went the ATG route. It went well- blessedly uneventful. I went back to school, and my counts were pretty good... until thyroid cancer struck at 17, the day before my high school graduation. I had my thyroid removed and did I-131 treatment with the isolation over the summer, was declared cancer free, then went on my merry way to college. I've gotten checked every year since then, and all the scans come back fine, and my counts have stayed pretty level in the low-normal range.

I'm writing this because last summer, I was diagnosed with PNH. My clone was initially really low, and I was totally asymptomatic, but that... hasn't been the case recently. I have a BMB scheduled for next week and I'm dreading it. I have been staunchly against transplant from the start because I didn't want to put my life on hold, but now it's looking like it's my only option.

And I'm scared. Because my counts aren't horrible (wbc holds at 4, platelets at 75ish) I'm allowed to go back to school, and I'll graduate in November. But as soon as that's done, a transplant is in my future. My sister would be my donor.

I'm ready to deal with this like an adult, but I have a lot of questions. I've found that hearing about other peoples' experiences really helps me.

For those of you who were working before transplant, did you keep your job and just go on leave? Did you have to quit? Did they fire you? Is that even legal, for them to fire you for something like this?

How long did it take for you to lose your hair? Did you lose it all, or just some? Do you HAVE to have a Hickman line? Because I've been there and done that, and they suck, especially in Florida summers. Does cyclosporine still smell like skunk?

I'm so tired of fighting. Is it even worth it?

[squirrellypoo]

Hi Mel! (I'm Melissa, are you also, or are you a Melanie?)

I'm also a young'un in transplant-land - I was 30 when I had mine 3 years ago. I know it sounds really scary (and it is), but you have to look at it this way - a transplant can be a CURE. That's it, done. ATG has a limited time that it works, and it may come back to interrupt your life again and again. But a transplant can be IT, and especially with a matched sibling donor and being so young, You've got AWESOME prospects on your side!

I did a play-by-play of my transplant in its own thread if you want to read it, but I'm happy to answer questions, too.

Originally Posted by Mel L

For those of you who were working before transplant, did you keep your job and just go on leave? Did you have to quit? Did they fire you? Is that even legal, for them to fire you for something like this?

I work for a really small company, and I was off work for 6 months, from the time I was admitted for transplant to 6 months post-transplant. After that, I worked 4 days a week for about 6 months further. I found it really helpful to have Wednesdays off for a rest to have 2x two days weeks, essentially. My employers are awesome though, I've been with them ten years now.

How long did it take for you to lose your hair? Did you lose it all, or just some?

It took mine 3 weeks from the chemo to fall out, and I'd say 98% fell out - when it started to look bad, I just had my husband clipper it off, and I got some really fun wigs off eBay (blonde, brunette, bright red, pink, blue, I loved them!). I also made a bunch of close, jersey caps for wearing around home and sleeping in.

It takes a surprisingly long time for hair to grow back, though. At 6 months post transplant I finally had enough for the shortest possible pixie cut. It took about two years to reach shoulder length again.

Do you HAVE to have a Hickman line? Because I've been there and done that, and they suck, especially in Florida summers.

When the alternative is being jabbed over and over again for veins that are no longer there, you REALLY want one. During a transplant, you often need 2 or 3 IVs going at once, and they often start very early in the morning, so I'd be surprised if they were optional. You might be able to consider a PICC line in your arm instead though? Ask your transplant centre.

Does cyclosporine still smell like skunk?

Hahah! I forgot the pills had a funny smell. I was only on it for about 2 months post-transplant, but my experience wasn't the norm.

I'm so tired of fighting. Is it even worth it?

You have already been through SO much, and you're potentially so close to kicking this thing to the curb for good. Why give up now, when in a few years you could be living your life again without this spectre hanging over your shoulder, wondering when it'll reappear? Seriously, I'm running marathons now, and I'm healthier now than I was before my transplant. It's easy to only see the horror stories, but there are success stories, too.

One thing that you haven't brought up that you NEED to think about now, though, is that it's extremely likely you'll be infertile after your transplant. You need to ask your doctors now about freezing eggs or embryos if you're not in a position to have babies before your transplant.

[Mel L]

Originally Posted by squirrellypoo

Hi Mel! (I'm Melissa, are you also, or are you a Melanie?)

Thank you for your reply, Melissa! I'm a Melanie! At college people couldn't remember all those syllables, so Mel has been the norm for the past few years.

I'm just really worried that I'll never be able to get a job, and I have loans to think about. There is no market for my field back home- or any field, really- where I'd be having the transplant, so I'd essentially lose a year of my life, just sitting around in my childhood home, rotting under the stares of my parents.

Originally Posted by squirrellypoo

It took mine 3 weeks from the chemo to fall out, and I'd say 98% fell out

I guess I'll learn to crochet hats- gives me something to do while I'm in isolation.

Originally Posted by squirrellypoo

When the alternative is being jabbed over and over again for veins that are no longer there, you REALLY want one. During a transplant, you often need 2 or 3 IVs going at once, and they often start very early in the morning, so I'd be surprised if they were optional. You might be able to consider a PICC line in your arm instead though? Ask your transplant centre.

I remember the Hickman being both the best and worst thing that ever happened to me. I got mine when I was 15, for ATG treatment. I have horrible veins to begin with. The surgeon who placed had a real sense of humor- I woke up and there's this tube sticking out of my left breast. Which grew. Because I was 15. That felt really good. But what I missed most was showering. It's Florida; Even when it's cold, it's hot.

Originally Posted by squirrellypoo

Hahah! I forgot the pills had a funny smell. I was only on it for about 2 months post-transplant, but my experience wasn't the norm.

I'll never forget the smell! My dad had a kidney transplant the year before I got diagnosed, and I remember him having to mix the liquid form of it into his orange juice because the pills were too difficult for him to swallow. They have a generic out now, though, and it's not quite as bad as the brand-name stuff.

Originally Posted by squirrellypoo

One thing that you haven't brought up that you NEED to think about now, though, is that it's extremely likely you'll be infertile after your transplant.

Good! That's the most enticing side effect of BMTs I've heard yet!

So... chemo. I know that most people get pretty nauseated from it, but what happens if you can't keep anything down? Do they just pop you on an IV until you can handle food again, or is it an endless stream of being bullied to eat something, only to throw it up later? Are there certain things you aren't allowed to eat? Do you have to stick to hospital meals, or can you have actual food brought in?

[donna j.]

Dear Mel,

Well I posted a long response but it has disappeared from my screen as it sometimes does.
here is what i say having had MUD transplant for MDS in Jan 2012.

Make sure this is the right time to have a BMT. There are now guidelines when to have one. I also got 2 additional opinions; all agreed BMT was the route, and now. I responded poorly to 3 rounds of Vidaza and suffered from Pancytopenia, requiring transfusions in 2 areas, and contracted pneumonia. Based on age and BMB profile of blasts and chromosones, etc, it can be determined if now is best.
Expect a different life for a year. Sorry. I never heard that message, and moving into my 7th month, I am finally acknowleding this fact I face. One does improve but for me it has been a dance of 2 steps forward, then 1 back,
I would say before hand be knowledgble as you can: do you have the same blood type as your sister? Which HLA 's match and which do not? Have you tested positive for Cmv virus (now)? Has your sister? You can be better prepared for possible complications afterward.

AAMDSIF website has great webinair conferences, including caring for yourself after treatment, for cognitive abilities and long term survivorship following treatment.

My hair grew back at 5-6 months, and everyone loves it including me. It is summer now, so I enjoy the short hair. January-May I wore Patagonia hats 24-7 as I was always freezing.
Best thing of all, this can be a cure!!!! Next best of all, no pain!!!! Game of Thrones read through all 5 volumes. Silver lining, I lost some weight!

Donna

[Mel L]

Thank you, Donna!

I have a biopsy scheduled for next week for them to see if I've developed AML, take a look at my PNH clone and cellularity... the whole shebang. My entire hematology/oncology team has been recommending transplant for some time now- it was discussed in 2006 and came back into conversation last year. It's since all they seem to talk to me about. It's me who's been dragging my feet. I get the feeling that they'd cart me off and shut me up in the ward as soon as I said they could.

My sister and I are both CMV-free and she's a "perfect" match, though they never really elaborated on that. We're both young (I'm nearly 21, she's 17), and I'm told that that makes a big difference. I don't know about that, though. I feel pretty old.

Thank you for telling me to expect a different life. I know that, but it's nice to finally HEAR it from someone. I wish someone had told me that when I was 14! And thank you for the heads up on the AAMDSIF webinars- I'll be sure to check those out!

Hope your recovery is going smoothly,
Mel

[BrianFlaigmore]

Hi there, I am currently +65 days after a matched unrelated donor transplant and I'm 26 years old. If transplant is an option for you then it is a very anxious time, your "life" might be put on hold for a bit. But honestly life is not on hold. During this time I have come to know myself so much better and I know that sounds like a copout but it actually has become the most important time in my life so far. I'll just run through some of the questions that the two awesome responses might not have touched on.

Before my transplant I was transfusion dependent from December '11 to July '12. I had a PICC inserted in in February when we tried ATG and kept the line until about two weeks ago when it was removed(!). It's a bit of a hassle flushing it, getting the dressing changed and covering before showering, but is was so much better than the alternative (which I experienced from December to February getting poked ten plus times per week with low platelets). It kind of becomes your friend hanging out of your arm, kind of.

For the days following chemo you will more than likely be fed with TPN. It's awesome that the stuff exists but trying to get off of it sooner than later by continuously eating very very small meals is good.

Everyone feels different physically following the transplant. But I was able to begin walking quite a bit by pacing in my room when I was isolated. Then more so when I was freed. I try to walk two or more miles a day at the park near my house, although I have to wear my n95 mask since I am still within 100 days and I really don't like people staring and wondering what it wrong with that guy. The best advice that I have heard over recovering quickly is come into the procedure in as good of shape as you can and try to get out of bed every single day.

With all of that being said I hope that something changes and you will not need this treatment, but know that if you do that it is something that is very conquerable.

Brian

[donna j.]

Hi Mel,
I just wanted to add a couple of things. First, I guess you are on your parents insurance. This is important to consider with not knowing what is going to happen to Obama Care. The costs for a BMT runs about $ 1,000,000

Also, in the future, your sister may not be an available/appropriate donor.

Take notes, ask questions.

Please let us know how things turn out with your BMB, and any questions regarding my experiences, I will be happy to share.

Take care,

Donna

[AAMarge]

Mel--
This thread is old, but just in case.....One item about jobs, money, etc after transplant: There are certain health conditions that are automatically approved for Social Security benefits as a disability. Bone marrow transplant for aplastic anemia is one of them, as you will definitely not be able to work for a period of time. This means you can get some payment as a disability benefit for a certain amount of time (I know for sure up to one year post transplant--not sure of ending of benefit). This info is on the Social Security website.

Marge