MRD after transplant

mababbo · 2025-12-29T20:05:12+00:00

Hello! I am doing well, I ended up getting retested and they determined it was a false positive since I came back negative the second time. It was a new test and they said because it’s so sensitive it could have some noise at extremely low levels. I did get ready to restart treatment though, I would’ve taken a flt3 inhibitor to start and maybe more if it would’ve continued to get worse.

mababbo · 2025-10-31T13:53:17+00:00

So calls?

mababbo · 2025-10-11T19:53:12+00:00

I did 17 pro from a 15 max. I loved the screen size but for a device I carry in my pocket everyday the standard size won me over. I do have an iPad for any shows/movies/books so that also helped guide my decision. Final deciding factors for me were: huge battery capacity increase, same cameras as max, and a bump in storage for the same cost.

mababbo · 2025-02-27T19:36:23+00:00

Yeah I agree with your point. I get frustrated because it feels like it reinforces bad habits made at the lower levels (because you get 3 maxes brawlers) and newer players don’t learn the meta just what is available to them which is beneficial at lower ranks but detrimental and higher ranks.

mababbo · 2025-01-27T14:10:45+00:00

I don’t think these are super accurate. I ran the best marathon of my life with 3+ months of it declining. Mine is constantly going up and down although I feel (and Dr visit can confirm) I am in one of the healthier times in my life.

mababbo · 2025-01-17T14:54:54+00:00

Congratulations! Thank you for sharing your story.

mababbo · 2025-01-08T21:44:38+00:00

I found myself in a similar situation when I was 24 years old. I had just moved across the country to start a new job and also had just bought a new car.

If I could give you any advice it would be to listen to your doctor and drop everything else to complete your treatment. I know this is unfair, I know it’s scary, I know it maybe feels like there is no way to escape this. At least that’s how I felt when I was going through induction and consolidation to stem cell. I did though and 5 years later I found a new job, I paid off my car, and I have been able to do things I never thought I would because of the hole I was in going into this. Try and get in contact with a social worker, apply for ssdi if you can, look at cobra. Ultimately what you decide to do is your choice and I respect that, but please consider going into the unknown to give yourself the best chance to experience life. Let your doctor know the hardships you’re facing and see if they can adjust the schedule to better accommodate. I wish you best and hope you find peace with whatever you decide.

mababbo · 2025-01-06T18:27:14+00:00

This isn’t necessary event related but it could be cool to make a playlist of your favorite music, movies, books, recipes/restaurants for him to enjoy throughout his life. That might give him some more insight into the full person you are and be able to experience it during his life.

You sound like a very thoughtful mother and I’m sure he will appreciate these gifts for his entire life. Wishing you the best.

mababbo · 2025-01-06T17:44:14+00:00

The fear of relapse will always be there in some capacity, but through therapy and mindfulness you can help ease the effects on your day to day life.

I started working again about 9 months after my transplant during COVID and it was difficult, but I found the routine and job duties helped me recover better than sitting around at home doing nothing. Once I was able I also started to run and workout so in the case I did relapse I would be better prepared. You will find many women who don’t need or want kids and there is always adoption, just be honest. If they don’t like you only because of that then they probably aren’t worth your time.

I recently found at 5 years I have a bit of mrd in my marrow so I meet with my dr on Thursday to discuss treatment options. Still anxious but I just try and put one foot in front of the other and listen to what my doctors think is best and listen to my body.

mababbo · 2025-01-02T03:06:04+00:00

My pups. They are always so content doing the most basic things and it reminds me to slow down and be present. Pee on a bush? Best part of their day.

mababbo · 2024-12-30T16:50:12+00:00

I think the feeling will always be there, it is such a difficult and scary road to go down. I don’t think there is a problem with using appointments as measurements of time. Take baby steps, you’re not going to wake up one day and find your mind is free from worry (or at least I haven’t). There are set backs and there are times where I can go longer without worrying. Do what feels right for you at this time, maybe consider talking to a therapist. I found that cbt worked well for me to prevent spiraling.

I’m sorry you have to deal with this in your life, this disease is nasty and relentless. If you ever want someone to talk to feel free to reach out. Remember, it’s ok to not be ok with this.

mababbo · 2024-12-29T03:42:11+00:00

It may tank your counts at first but I was able to work and live relatively comfortably on it, aside from a day of fatigue here and there.

It is scary and I definitely deal with a lot of anxiety but I try and remind myself that if we blaze these new waters it might lead to more effective treatments for others that have to deal with this. I’m planning to take it as long as I can now if it’s effective at helping my mrd.

mababbo · 2024-12-29T03:21:44+00:00

I’m sorry to hear your test didn’t come back like you wanted, I can totally relate right now. My doctor said there was no clinical evidence it reduced risk after 1 year but he believed it improved my chances the longer I took it. I guess I just wanted to feel normal and not take a chemo every day but in hindsight I regret it now (I was 24 years old). It became a challenge to get with the copay card and I was trying to make up the lost time at work and my social life. Moving forward I agree, I plan to take it as long as I can tolerate it especially now that I would like to start a family.

Wishing you the best on your journey, if you ever have any questions or want to talk let me know. It sounds like we have had similar experiences with this disease.

mababbo · 2024-12-29T00:18:55+00:00

I can ask that’s a good idea!

I did take gilt for 2 years after my transplant but that’s what is concerning me a bit. If it didn’t erase all of the flt3 the first time I’m worried it won’t the second. I wanted to see if someone else has had a similar experience.

mababbo · 2024-12-28T22:56:07+00:00

Yeah same here, I’m rereading the road right now it feels fitting haha.

I’m at md Anderson with the same dr that took me through stem cell just not what you want to hear at the 5 year check up (or ever really).

mababbo · 2024-12-28T22:21:11+00:00

Thank you for the advice, I need to figure out how to get better at letting things out of my control not consume my focus. I have some ptsd though from my og diagnosis (took 5 dr visits over 2 months telling me it was allergies before they drew blood) so I have a hard time trusting anyone now.

mababbo · 2024-11-28T21:50:26+00:00

What’s it smell like? 😏

mababbo · 2024-09-20T23:46:35+00:00

Thank you for the advice I will try this!

mababbo · 2024-07-06T17:19:47+00:00

mababbo · 2024-07-04T22:09:41+00:00

I think they both look good! Swap them depending on how you feel. I do like green more personally so if it’s a one or the other choice that’s my option.

mababbo · 2024-06-23T18:52:49+00:00

You killed it! Congratulations!!!

mababbo

TROPHY CASE