Roller Coasters and Family Fun after bone mets

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KristinB577
KristinB577 Member Posts: 9

Hello,

I am 42 with MBC to my spine, hip, thigh, eyes and lungs. Good times. I also have two children, 10 and 11 years old.

I have been on Ibrance and Letrazole for nearly 4 years, as well as monthly Xgeva injections. My scans show no active legions and everything is stable and have been for most of those 4 years. I still deal with quite a bit of joint pain and fatigue.

My family is doing a trip to Disneyland next month and I really want to enjoy the attractions with them. Do I really have to stay away from all roller coasters and more intense attractions. I have always loved those and my kids love them too. Their is family coming with us that can ride with the kids, but I really want to be able to go on a couple as well.

Anyone else have to make this call and rode anyway? I am a risk taker but I can't find any information online anywhere that is pro or con. My dr tends to be middle of the road, "Well, it's probably better not to." Basically it's my choice, I just want to hear from others.

Thanks for taking the time to read and answer :)

Kristin



Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2019

    I'm no roller coaster fan and could hardly do anything the first few months after my metastatic diagnosis last year. In fact, my bones were weak enough that there was significant risk of fracture. Now, however, I feel stronger and might consider an attempt at a more strenuous activity if I were so inclined.

    My five level back fusion hardware makes it difficult to twist which means no golf courses or driving range. A trip or fall for instance on a tennis court could be catastrophic. My surgeon likes to hear that I do water exercise classes.

    All that to say, you need to evaluate each situation very carefully. Sitting strapped into one of those padded chairs that I have seen would probably be safer than sliding around on a bench. Pace yourself in case the fatigue leads to light-headedness or makes you dizzy. Stay well hydrated. Seems like it could be a fun memory maker for you and the kids. Should you decide to go for it, be sure someone takes a few pictures then come back here and post a few!

  • illimae
    illimae Member Posts: 5,710
    edited July 2019

    If you’re not a fracture risk, I would ride but I’m a risk taker too. I recently floated a local river, popped my inter tube, got stuck on and beaten up by shallow rock areas twice and was sunburnt but I recovered and had a great time. I say live it up 🙂

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited July 2019

    Kristin,

    I have had bone mets throughout my body for four years. I still have lots of active Mets. I have been to DisneyWorld several times and have gone on any ride I wanted. One winter I asked my MO if it was okay to ski. He knows that QOL and a sense of normalcy are important to me. He said to go ahead and try skiing, and if it hurt stop! I have been skiing many times since then. I do not do black diamond trails, but I have fun.

    I think you should go with your gut. If you feel good and want to try some of those rides at Disneyland, go for it. If you are nervous, limit yourself to the calmer rides. As others have suggested, rest if you need to. Regardless of what you decide to do, take lots of pictures and have a good time. Oh, and moms have a terrible reputation for being absent from photos. Don't just take the pictures, make sure you are smack dab in the middle of lots of them.

    Hugs and prayers from, Lynne


  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    I have less extensive bone mets than you, but I also love to go on all the rides at amusement parks. Although your mo gave you a rather tepid answer if you are not at great risk for fractures and generally go about your life normally, I say go for it! Living well and having fun are integral to a a good QOL and one can't even put a price on the wonderful memories you will be making with your family. Listen to your body, but have a blast.

  • Partyoffive
    Partyoffive Member Posts: 188
    edited July 2019

    hi Kristin

    I have bone mets in most of my bones-I’ve been stable for 6 years and have enjoyed many amusement rides with my 5 children roller coasters,tower of terror and water slides. It’s about living life and making memories with my kids if I had a hairline fracture or pain I may have opted out of the more aggressive rides. Most of the rides at Disney besides the Aerosmith roller coaster aren’t too violent-have fun with your family and do what you feel comfortable with.

    Kristin

  • Momchichi
    Momchichi Member Posts: 133
    edited July 2019

    Hi Kristin,

    I went to Disney World last month and rode everything I wanted with minimal pain from my lumbar met. I did only one round on Space Mountain though, just couldn’t get in a good position to brace myself. Just listen to your body and slow down as needed. I always tried to be next to my husband instead of one of the kids so I didn’t move around as much in the seat. Mine are about the same age as yours and don’t provide much cushioning, lol! The worst back pain I encountered was on the airport shuttle returning home, when we hit a huge pothole.

    Have a wonderful time!!!

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2019

    Yeah, it’s been a few years but I remember after my diagnosis going on the Millennium Force roller coast at Cedar Point, it was sort of around the time it was the top roller coaster in the world.

    As partofive says, most Disney rides arent violent. Especially since you are enjoying stability with the mets at this time, it seems like you could proceed with caution, follow your gut and have a really good time.


  • Nkb
    Nkb Member Posts: 1,436
    edited July 2019

    I rode an elephant bareback at a sanctuary in Laos 6 months ago, and had a moment or two of “ if you fall off things are going to break” but, I didn’t fall off. I would ride the rides- the one I would double think about is a roller coaster since I’ve had friends without cancer screw up their necks from being jerked around.

    Enjoy your trip!

  • JFL
    JFL Member Posts: 1,947
    edited July 2019

    I have a history of very advanced bone mets pretty much everywhere in my body at diagnosis and was in excruciating pain and could barely walk. My bones were in such bad shape it took a good year or so to fully heal all the damage. My bone mets were inactive for 4 years until recently I had one single vertebrae light up although my current treatment seemed to take care of it rapidly. I have gone to Disney World, Universal Studios and other theme parks over the years and haven't had any issues but did not ride the biggest of the rides. Not by choice - I was there with young son who isn't tall enough for everything. My DH isn't interested in the thrill rides or even the smaller ones so I end up going on all the rides with my son. I love thrill rides and would be open to going bigger in that respect. I agree, you should go with your gut - based on how are you feeling and how are your bones doing now. Also, you can start with the super mild rides and slowly work your way up to bigger rides and see how you feel along the way. Have a great time at Disney World!

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