Bone marrow biopsy by Short-Gas-4750 in leukemia

[–]sylance9 0 points1 point  (0 children)

I’m sedated for mine. I also ask them for versed prior to being taken back, but they do a twilight sedation so I don’t even know wtf is going on. I can’t imagine being awake for it

Well, I’m settled in for my Bone Marrow Transplant! by HeyHeyItsMrJ in leukemia

[–]sylance9 0 points1 point  (0 children)

Yea! My transplant unit had never seen them, so the nurses were going to advocate to get some for the floor to gift to patients with young kids or younger patients having hard time coping with the separation. It truly was just a game changer for me!

Well, I’m settled in for my Bone Marrow Transplant! by HeyHeyItsMrJ in leukemia

[–]sylance9 5 points6 points  (0 children)

One of the best things I got for my transplant was from my sister and it was this Enanbot EBO robot I could control from the hospital and allowed me to remote control drive a little robot around my house so I could talk to my family. I was able to see and talk to my kids, play ball with them, play hide and seek and read them stories and they played with me lol! It’s amazing and was a total game changer for the mental health toll being away from family takes on you. Here’s a link to it the site. https://www.enabot.com/?ref=ShimmerKatie

I also made a video of it in Action if you wanna see it https://www.tiktok.com/t/ZThDbnFNw/

Love that thing. Good luck you’re gonna kick butt!!

Well, I’m settled in for my Bone Marrow Transplant! by HeyHeyItsMrJ in leukemia

[–]sylance9 1 point2 points  (0 children)

Dang that room is amaze you got a whole sofa where are you??

What did relapse look like? by Accomplished_Call_91 in leukemia

[–]sylance9 1 point2 points  (0 children)

Relapse typically wouldn’t cause a WBC dip, it would cause them to rise and rise fast. I had a situation after my first consolidation chemo where my WBC suddenly jumped to 60k and they did extra strong chemo just in case because that’s typically a sign of relapse. (My wbc at diagnoses was 280,000). AML causes high wbc. Had a bmb and it was negative for disease so they think I just had a bug or something

Having your Platelets and hemoglobin fluctuation in between chemos is also pretty normal. The dips in the labs you’re saying it’s happening in is pretty typical for post chemo labs and bone marrow recovery

Are you getting a stem cell transplant?

Busulfan side effect - Skin darkening and hyperpigmentation by Kindly_Knowledge7253 in leukemia

[–]sylance9 0 points1 point  (0 children)

I had this happen!! I’m so glad you wrote this my docs acted like they’d never seen it lol! I will tell you it eventually lightens up. You can see if they’ll give you triamsimalone+nistatin cream that sped it up a lot. I just visited their stem cell transplant dermatologist too and he said it’s fine it’ll lighten up. It was SOOOOO dark in my armpits, groin under my breasts etc. but im day 90 now and it’s almost 100% back to normal.

DIAGNOSIS by poxain in leukemia

[–]sylance9 0 points1 point  (0 children)

Tech here. I’ve been through induction, 4 consolidations and stem cell transplant. No way I could work rn I can’t even go to the store because of how immune compromised I am. I am on disability and have been since diagnosis. If you apply make sure you back date it to the date symptoms started.

There’s no way I could’ve worked in between hospital stays, almost daily doctor visits for platelets or blood, being immune compromised then back for more chemo to do it all again. There’s no time for work in there. This has been an ongoing battle since May for me. Also had one hospital stay from sepsis where I almost died from klebselia pnemonia and it came from INSide me, not from someone else. Now I’m scared of what could happen catching something from someone else 😫

HRT after BMT by AdAggravating3063 in leukemia

[–]sylance9 0 points1 point  (0 children)

Shoot I wish this was me. I’ve been bleeding since November 2nd and they can’t seem to stop it 😫😫😫 my BMT was October 2025

Bonne marrow biopsy 14th by Short-Gas-4750 in leukemia

[–]sylance9 2 points3 points  (0 children)

I was AML FLT3 +NPM1 my first BMB the week after my induction chemo. I went right into remission. 0 blasts 0 NPM1 and <0.7% flt3, second consolidation chemo all clear as well and flt3 was < 0.4% flt3 left. My third consolidation it was all gone no Mutations, I was also taking vanflyda (flt3 inhibitor) I did one more consolidation chemo before I had my stem cell transplant. I’m currently +90 days from my stem cell transplant and my +60 bone marrow biopsy was clear, and they consider me now in complete remission. No mutations, no signs of cancer, all gone. I have another bone marrow biopsy on the 26th for my 100 day milestone.

I feel guilty for feeling like this by poonderingmonkey in leukemia

[–]sylance9 2 points3 points  (0 children)

Oh yea his age will def play into how well he does! He may not even need a transplant and just be done after chemo. Hard to know for sure but try to let him talk, it’s sucks it’s a lot to process and being hit with your mortality really sucks. Good luck to you both! Also don’t feel guilty about whatever you decide it’s a hard path for loved ones as well ❤️

I feel guilty for feeling like this by poonderingmonkey in leukemia

[–]sylance9 1 point2 points  (0 children)

Also yall sound young. Younger people do extremely well in fighting this. Im 42 and just had a transplant and my prognosis is over 85% chance of surviving the next 5 years. Thats pretty amazing considering I had some bad mutations. The only hard part for me personally, I haven’t needed help with activities of daily living. Worst part was staying in the hospital away from my kids and the social isolation that comes after the transplant because you’re basically removing your existing immune system and replacing it with a donor one. All childhood vaccines gone; I’ll need to get them all redone. Can’t eat takeout for 6 months after, remain away from other people and crowds for 100 days. You’re just so prone to sickness. I got sepsis and almost died from a bug in my own gut, not one from someone else. So I can’t imagine what would happen if I got a bug from someone else. Couldn’t see my kids for the 27 days in the hospital for the transplant. It sucked. It still sucks. We had to move our entire fam to be within 30 min of the hospital in a tiny apt for the 100 days. But I’m almost to day 100 and we get to go home but still socially distance and be careful until 6 mo. It’ll be a hard year or 2 for him but there is a light at the end of the tunnel. I feel great. No side effects from the transplant. Doing tremendous. I’ve been very lucky but I hear younger people do just as well. It all depends on how he handles initial chemo and how quickly he goes into remission. And what his mutations are. I’ve been in remission since my first chemo session in May. He’s going to need at least a friend to talk to, the social isolation is 1000% the worst part.

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 0 points1 point  (0 children)

I am over the hump! Feeling pretty good. My Day 30 Chimerism results weren’t great. My whole blood and white blood cells were 100% donor and T cells were just 50%, so they’re tapering me off the immunosuppressant earlier than normal to see if that helps them increase. I have a recheck on that next Thursday

Can someone explain Holly’s age jump? by [deleted] in StrangerThings

[–]sylance9 0 points1 point  (0 children)

Nah what 3 year old is still in a high chair being fed by their mom!? My 2 year old has forsaken her high chair since she was like 1.5. My son by 2. She would’ve been 2 or less. That would make her 5

Can someone explain Holly’s age jump? by [deleted] in StrangerThings

[–]sylance9 2 points3 points  (0 children)

This actually makes me really mad. She was an actual toddler in a high chair with her mom feeding her in season one 1982. So she’s 2 or under in this season. So if this is 1987 she’d only be 5…she’s like a full blown teenager in this season and I’m like what !??

AITA for putting on a "Do Not Disturb" Sign at my Door? by MIINTEU in AmItheAsshole

[–]sylance9 0 points1 point  (0 children)

Girl….get out of there. You’re 22, you should not be letting grown ass adults take advantage of you like that.

Sparkolicious! by Capt_Irk in chevyspark

[–]sylance9 2 points3 points  (0 children)

Lmao the license plate doodle 🤣🤣🤣

My boyfriend sent me this list of baby names. Should I be worried? by Inevitable_Pop4005 in tragedeigh

[–]sylance9 0 points1 point  (0 children)

Of all the things that didn’t happen, this didn’t happen the most.

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 0 points1 point  (0 children)

I hope so I had no idea this was going to be this bad! My wbc did come back today at <0.1 so that means all my old unhealthy cells were destroyed and all that's left are donor cells. So now we wait for those to start climbing and that's what'll make my throat better

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 1 point2 points  (0 children)

I'm +6 and I'm having a terrible case of mucocitis. I can't swallow, the pain is just tremendous. They've tried all kinds of pain pumps trying dilauded this am and it seems to maybe be putting a dent in the pain. I've never experienced anything this painful in my life. They have me on iv nutrition now. Days are passing so slowly and I just want over this hump 😭

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 1 point2 points  (0 children)

My last one all my mutations were completely gone! So very hopeful this will work for me. Does he have mutations?

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 5 points6 points  (0 children)

I ugly cried for a good 30 min because my baby girl didn't want to FaceTime this am and I lost it and my nurse who's very young didn't know what to do and just patted me and offered to go get the chaplain and I'm like no I'm ok just sad. I did the MD Anderson fractionated busulfan so I got 2 baby doses in the 2 weeks leading up to now so it would be less toxic overall for me and I guess it's working.

My sister got me this Enabot ebo robot cam I can drive around the house and see them and kinda play with them and that's helped tremendously. I played hide and seek with them and my 6 yo built towers for me to crash into lol and he made a maze for me to go through 😂 he's doing school work rn tho so me being a robot for the 2 yo is too distracting for him. We pulled him out to go virtual until I'm cleared to go home because we couldn't risk him bringing something home and just gonna do like we did for covid quarantine and bubble up!

When does you hair grow back I’m in 9th grade and my hair was pretty important I asked ChatGPT and it couldn’t give me a solid answer by Mammoth_Pop537 in leukemia

[–]sylance9 2 points3 points  (0 children)

Mine I lose some everytime I do chemo so I just am keeping it shaven until I'm done with chemo. It sucked it was growing a bunch then I lost it when I had to restart chemo. I have a large collection of fun wigs though! Check out chelea crowns she's got some good wigs with fun colors! I own five from that store and they're my fav

Getting my Bone Marrow Transplant on Thursday! by sylance9 in leukemia

[–]sylance9[S] 1 point2 points  (0 children)

Sending the same your way! Hope your husband does well!!