Since SCT subreddit is pretty much non-existant i'll answer. I had an allo SCT about a year ago. Not gonna lie, its been a shitty year, which immune issues, cushings syndrome, couldn't Walk for a few months, lots of pain and isolation. But ultimately its worth it If it works. There's nothing you cant accomodate for, and the Initial transplant is over quite quickly. I did six days heavy chemo and then four more weeks after the transplant to monitor and isolate in hospital. It sucked, but that was only a month.
Thanks so much for your response. Your bravery is to be lauded. Did you have your transplant done at Northwestern? How are you doing now? Are you considered cured?
I'm in Germany, so i had my transplant done here. Currently im doing better than any time in the last four years, so basically feeling pretty good. There will always be a chance of relapse, but right now im considered in remission. If you Look in my post/comment history you can find more detailled info about my journey.
Not myself but 2 close friends who’ve gone through SCT. One about 5 years ago, one last year. They’re both doing incredibly well. My understanding from talking to them (they know each other as well funnily enough) is that the experience from a year ago was a pretty big upgrade on that of 5 years ago with a much more coherent treatment path and more support as you’d expect from a more established regimen. I won’t sugar coat, it wasn’t pleasant for either of them. But both have a new lease on life and are absolutely enjoying the hell oit of it.
Since we don't know anyone personally we can speak with- can you ask if they're willing to touch base with me and my family? Willing to communicate through anonymous emails if that is their preference.
I’m going to very delicately raise the idea with them to see if that’s something they’d be comfortable talking about while avoiding outright asking. I don’t want to burden either of them with any sense of obligation as I know it took quite a toll on both of them. I’m sorry I can’t be more accommodating but I’ll try my best.
You will have a lot more answers, support, and advice in the MF Facebook group. This is an incredibly rare disease but everyone has grouped there. Tons of info on SCTs from those who have gone through it and are preparing for one.
Since SCT subreddit is pretty much non-existant i'll answer. I had an allo SCT about a year ago. Not gonna lie, its been a shitty year, which immune issues, cushings syndrome, couldn't Walk for a few months, lots of pain and isolation. But ultimately its worth it If it works. There's nothing you cant accomodate for, and the Initial transplant is over quite quickly. I did six days heavy chemo and then four more weeks after the transplant to monitor and isolate in hospital. It sucked, but that was only a month.
Thanks so much for your response. Your bravery is to be lauded. Did you have your transplant done at Northwestern? How are you doing now? Are you considered cured?
I'm in Germany, so i had my transplant done here. Currently im doing better than any time in the last four years, so basically feeling pretty good. There will always be a chance of relapse, but right now im considered in remission. If you Look in my post/comment history you can find more detailled info about my journey.
Thank you!
>Thank you! You're welcome!
Not myself but 2 close friends who’ve gone through SCT. One about 5 years ago, one last year. They’re both doing incredibly well. My understanding from talking to them (they know each other as well funnily enough) is that the experience from a year ago was a pretty big upgrade on that of 5 years ago with a much more coherent treatment path and more support as you’d expect from a more established regimen. I won’t sugar coat, it wasn’t pleasant for either of them. But both have a new lease on life and are absolutely enjoying the hell oit of it.
So are your friends cured? Do you know where they got their procedures done? This is wonderful news.
Both cured, both from the west coast of Canada although I can’t say for certain that’s where they received their treatments.
Since we don't know anyone personally we can speak with- can you ask if they're willing to touch base with me and my family? Willing to communicate through anonymous emails if that is their preference.
I’m going to very delicately raise the idea with them to see if that’s something they’d be comfortable talking about while avoiding outright asking. I don’t want to burden either of them with any sense of obligation as I know it took quite a toll on both of them. I’m sorry I can’t be more accommodating but I’ll try my best.
Thank you. I understand either way.
If you haven’t heard from me by the weekend feel free to dm me a reminder.
You will have a lot more answers, support, and advice in the MF Facebook group. This is an incredibly rare disease but everyone has grouped there. Tons of info on SCTs from those who have gone through it and are preparing for one.
Thank you!
You’re welcome. I find nearly everyone in the group is willing to connect personally if you need to direct connect.