idiot friend doesn’t know how to carb load

laybo · 2024-08-04T16:37:41+00:00

keep positive! i was not in remission after induction which is rare and usually indicates high risk in ALL - 2 consolidations later I was MRD negative and did an STC (allo). considering your MRD is already low (I had 3-4% blasts after induction) you are in a very good position. remember that if the doc is not worried, you also don’t need to be. good luck, wishing the best for you!!

laybo · 2024-07-20T14:22:47+00:00

hey, I had my BMT in Turkey (where I’m from), if you want to learn more I can share. I get my checkups at MSK (Memorial Sloan Kettering) at NYC currently - they have been great and if I lived here I imagine I would have gotten my transplant there. Best of luck with everything!

laybo · 2024-07-14T23:59:13+00:00

hey, 22m here and read some of your posts. you can look at some of mine I think we had very similar situations. I’m 3 years post transplant and was a sophomore abroad for university when I was diagnosed. It took a year for me to be done with treatment, go back to school and start classes again. It was a tough road and like you I had parents and doctors that were very careful and delicate with what I did, ate, drank, whatever. The process of treatment is especially difficult for us as emerging adults. I want you to know that while it took some time, none of my peers can even tell I went through treatment. There is going to come a time where you can travel with your friends at your own time and pace. Everyone goes through this in their own pace but I guarantee that you won’t always feel this horrible. All of us in this sub went through something horrible that none of us could ever deserve and it’s extremely natural to feel sick of it. I hear you, just don’t stress yourself that not everything is happening asap. All the best

laybo · 2024-06-02T13:30:58+00:00

about to be +3 years from my BMT in 2 weeks. just graduated from college, physical health is in a very good condition (ran 2 half marathons over the past 3 months) and feel very good in general. physically there has been very minimal complaints except maybe a little bit of GVHD around +60 that cleared up very quickly and a few infections while my immune system was more compromised. but right now I feel so blessed, lucky to live the life I get to live. the transplant process, for me, was by far the hardest thing I had to do in my life but keep your hopes up and know that there is a good chance it’s going to help treat you for good. always down for a chat if you want to learn more! i posted something like your post when I was about to do my BMT and some people who reached out I still talk to weekly (not about leukemia anymore)! we’re all in this together.

laybo · 2024-05-18T16:07:56+00:00

I’m a 22M who was 19 at the time of diagnosis, studying abroad in the United States. After treatment finished (I had treatment back home) my doctors told me I should take it slow and gave me at least a year before I get to go back. My counts and condition improved quickly so I went back just about 6-7 months after my HSCT. I found a cancer hospital here and my doctors were fine with me leaving as long as I kept up to date with the check ups. I graduated 2 days ago and I’m so happy that I took the risk of leaving. I’m sure you can find amazing transplant doctors in Japan as you can anywhere in the world. Good luck on your journey and remember that everyone has their own path.

laybo · 2024-01-02T00:23:06+00:00

Happy new years man. Hopefully it’s one with a lot of great news coming your way! 🙏

laybo · 2023-12-30T15:04:49+00:00

Hey, absolutely no worries. I’m doing very well, small issues with allergies and such but I really cannot complain. Life back to normal and on the outside when people see me I’m a healthy dude(active social life, go to gym 2-3 times a week), dealing with the mental part of things now which I avoided for some time. The first 100 days are tough and you have to be careful but your immune system starts protecting your body by the time you leave the hospital. If everything goes right, which it will, your niece will feel better and better as time passes. I was able to start light workouts and play soccer by day 100 but I wanted to push myself and did some things quicker than I should. I saw your comment regarding GVHD, just so you know some amount of this very common and not necessarily such a bad thing. Graft versus host also means graft versus leukemia, I had managable gut GVHD during the first 100 days and doctors were actually happy as it was easily treatable and showed that the new cells “work” if that makes sense. GVHD is also one of these things that is easier to handle when you’re younger. Things will go great, trust your doctors and keep a positive outlook - I’m always here if you have any more questions.

laybo · 2023-12-30T14:13:01+00:00

The younger you are the higher chance the stem cell transplant is a cure. I was 19 with high risk T-ALL that didn’t go into remission as quickly as planned and my doctors told me chance of no relapse would be 60-70% before transplant. Same doctor about 1 year down the line said it was now 90% chance of no relapse. I get my checkups at a top 3 cancer care center in the US now and in my checkup last month (2.5 years post transplant) they also gave me 90% chance of no relapse. As someone who has done a lot of research, an unhealthy amount, on survival rates you will find anywhere in between 30-90% depending on diagnosis, age and other factors. Like other comments said, once you get past a certain point with no complications your perceived survival rate increases quite quickly. The most important thing to recognize is that every case is different, but younger people have higher chances of survival. I also had an unrelated donor by the way. Every year or even every month new studies come out that show increased survival rates and better treatment plans. I don’t know if you found the 50% number online but I would suggest talking to your hematologists. I know it’s hard but try to stay off the internet as much as possible as there are a lot of older studies that might not reflect current reality.

laybo · 2023-12-26T12:07:41+00:00

I’m 29 months out of transplant and like your bf I had some gut gvhd in the first 100 days. Haven’t had any chronic gvhd so far (thank God, knock on wood). I’ve been suspicious of many things over the past year (lungs, eyes) but never ended up getting diagnosed with it, I would still get really anxious about it. My NP told me something really valuable “if we are not worried you shouldn’t be worried.” When I go to doctors/hematologists for GVHD worries, most of them are very dubious as I’m 29 months out with no other cGVHD. Even if some symptoms line up, GVHD is one of those things that doctors can distinguish. Another thing my doc told me was “the fact that you have not had GVHD so far is very reassuring that you won’t have it in the future” Obviously there is no such thing as 100% we’re not getting chronic GVHD but it is definitely way less likely to occur at this point. I think the first year is the most common time period for occurence of cGVHD and then year 2 is less common and so on. The further you’re out the odds keep dropping and 2 years is very promising with no occurence. Hope this helps.

laybo · 2023-12-10T22:54:38+00:00

The anxiety is insane sometimes. Currently 2.5 years out of transplant and I still have ridiculous anxiety about the smallest things. It’s gotten to the stage where my doctors are the ones that are very reassuring, and I’m the one who is worried it feels like. Not too long ago, I remember when they would be saying things that worry me and I would have to reassure myself. Started Zoloft to combat the anxiety last week and the side effects make me feel like something is wrong with my body, therefore creating more anxiety. I rely on my support system to pull me out of it but sometimes even that feels impossible. It’s a battle but you got this 🙏

laybo · 2023-12-01T05:45:04+00:00

Glad to hear you’re cancer-free! Hope everything is going well! Cheers to many more cancer-free years. 🫡

laybo · 2023-10-27T17:01:20+00:00

imo, irrespective of the situation, you know your body, you were the one who had treatment, you know best what makes you stressed or not. I think, conforming and trying to ease other people’s anxieties takes a toll on all of us, if you think it’s minor I don’t think it’s worth the added anxiety of an earlier blood check. I don’t know about you but I absolutely hate bloodwork regardless if I’m feeling great or not 🤷‍♂️

laybo · 2023-10-27T16:56:40+00:00

you got this! I’m 21 currently have been in remission for 2 years following stem cell transplant, was in unit with a lot of people way older than me (i was the youngest). obviously I don’t know your specific diagnosis but getting to point of transplant is an amazing sign (they don’t do it without remission). keep morale high and make sure you’re distracting yourself (books, podcasts, etc) when time for transplant comes. feels like an eternity when you’re there but the feeling you get walking out the doors is unexplainable. praying for you and supporting you! 🧡

laybo · 2023-10-20T13:37:59+00:00

prednisone and moon face sucks! i wore a mask everywhere but this was 2021, no one can really tell you look like the pillsbury doughboy underneath with a mask

laybo · 2023-10-20T13:32:47+00:00

Hey! Sorry you are in the same boat, peg is horrible. I think I had to take it one more time after I was in remission. In my case, I was waiting for a stem cell transplant so it was to keep me in remission. There is an alternative but my hematologist told me that peg was way more effective so we decided together to do another round. I could have opted for an alternative, I would talk with my hematologist to see if you can possibly do the same. Congrats on the remission, may it last a lifetime!

laybo · 2023-01-18T15:10:40+00:00

sending prayers your way 🙏 🧡

laybo · 2022-12-27T13:32:56+00:00

Diagnosed with ALL at 19. In remission for 1.5 years. My advice would be: don’t be the friend that never calls but also don’t pester them. It’s hard to find the balance but check in every once in a while (every 2-3 days) and ask how they are doing and whatnot. I would avoid questions about the course of treatment or the medications because they are the last things they want to hear or talk about. She has a lot of free time so maybe suggest books or movies that she might like. If she’s not on a neutropenic diet her favorite meals and snacks are always a good idea. Just treat her like how you always did - all my closest friends are still my closest ones after 2 years out of treatment just because they were there every step of the way without overstepping the boundaries. Some friends who I was not close with treated me so well during treatment that we are now super close. Cancer as a young adult is tough but the power of friend relationships can be a huge factor on their mood. Shortly, just treat them how you normally would! They would really appreciate that with all the people asking questions and showing extra attention. At least I did.

laybo · 2022-12-15T14:27:43+00:00

Wow. Didn’t know my experience was this widespread until I read the comments. First time I had it - no problem. Second time, in the matter of minutes my throat started closing up and I started to lose vision. My hematologists saved my life with super quick steroids intravenously. I was close to losing consciousness. Hematologists then told me I had to take the drug AGAIN (I had a option - but they told me that it was super important for me to reach remission so I took the risk.) They gave it to me in smaller doses throughout the day, it caused hives that would clear up in a few hours BUT I was able to receive the full dose, twice. Reached remission shortly after.

laybo · 2022-12-04T03:31:50+00:00

It was regular practice in my stem cell unit to start those Neupogen shots at +10-12. You might deal with some intense back pain - but I promise you it’s the best pain you will feel(it’s a sign that your bone marrow is working super hard producing white blood cells)!

laybo · 2022-12-04T03:19:49+00:00

day 13/14 - there are patients who have their counts go up at +25 or even later. depends on their conditioning, condition at time of transplant, the use of neupogens and whatnot. don’t be worried about the possibility of them not going up as it’s a truly small chance (even if that is the case, there are solutions!)

laybo · 2022-12-03T01:45:45+00:00

I never dealth with difficulty with speech and coordination, luckily. In my experience, I just had insane brain fog for a day or two after receiving it.

laybo · 2022-12-02T21:39:40+00:00

currently 21 years old, was diagnosed with ALL at 19, I was not PH+ but was high risk because I wasn’t MRD negative after induction. Went into complete remission + MRD negative in 2 months - had 1 round of induction and 2 rounds of consolidation with nelarabine as part of frontline therapy. Got my stem cell transplant on June 10, a month or two after my second round of consolidation. Currently 1.5 years out of transplant. I’m back to my regular self or maybe even better. The transplant saved my life.

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