Post-BMT Update, PTLD and Complications after transplants

Рет қаралды 11,585

4 жыл бұрын

Here's a little update of where I've been after receiving my transplant and how I've progressed. It didn't go very smoothly unfortunately but we're working things out.
Here is a link to my GoFundMe:
www.gofundme.com/f/blah039s-l...
Follow my daily journey on Instagram:
/ tylerblah
Music:
Andrew Applepie
Jeff Kaale & Andrew Applepie - Jeff 'n' Andy
/ jeff-n-andy
Benny Martin Piano
SARAH MCLACHLAN - ANGEL (piano instrumental cover)
/ sarah-mclachlan-angel-...
GurtyBeats
The Cat Strut - Instrumental by GurtyBeats & Dyalla
/ the-cat-strut-instrume...
Other videos
My Relapse - • My Cancer Relapse & BM...
Treatment update after Chemotherapy - • Treatment Update, and ...
Side effects of chemotherapy - • The 5 Side Effects of ...
Bone Biopsy Vlog - • Bone Biopsy Vlog | Leu...
Why I chose chemotherapy - • 5 Reasons Why I chose ...
How Cancer changed me - • How Cancer has changed...
My Diagnosis with AML - • My Diagnosis with AML ...
What its like losing your hair - • What it's like losing ...
Intro to why I an sharing on youtube - • My Journey | Leukaemia...

Пікірлер: 87

@susanfrey1363 4 жыл бұрын

My son, who is 29, was diagnosed 2 months ago, so it's helpful to see your videos to know what is possibly ahead. I appreciate it very much. Thank you.

@TylerBlah 4 жыл бұрын

Thank you for sharing Susan. How is your son progressing now ? Has he started consolidation yet ? All my strength to you and your son in this time!

@Vivi-ib8nd 4 жыл бұрын

Stay strong you will win 💪🏼🙏🏼❤️💪🏼‼️

@melaniebarton7186 4 жыл бұрын

Just donated to your go fund me. It’s Not much but what I can and I’m really sorry you are going through this. I hope you can stay strong during this next fight and know that we are right behind you in this. Much love x

@fionamackertich1696 4 жыл бұрын

Tyler, great to see you've popped a new video up! Always awesome to hear about what's going on for you and inspiring how you face new challenges so courageously. Thinking of you and wishing you all the best at this time!

@TylerBlah 4 жыл бұрын

Thank you Fiona! Always feeling positive and motivated and will have a new video soon :)

@Swirlofcolours 4 жыл бұрын

Great to hear from you ☘️

@TylerBlah 4 жыл бұрын

Thank you jodykeo

@indayoung4569 11 ай бұрын

Amazes me how much positivity you are despite everything you are going through You are a good inspiration! 👍🏼

@blueskyswan 4 жыл бұрын

So great to see an update. I was wondering how you were going! Sounds like you've had some rough patches there... But you sound so positive. You're amazing!

@TylerBlah 4 жыл бұрын

Thank you as always!

@TheBoobster123 4 жыл бұрын

So glad to hear that you are symptom free - staying positive and busy will definitely help with healing. Looking forward to future vlogs ❤️

@TylerBlah 4 жыл бұрын

Thank you so much! Positivity and remaining busy I can definitely agree is important :D

@joykiser6673 4 жыл бұрын

Your kitties are so beautiful and I’m sure they are playing a big part in keeping your stress down. Many prayers for you.

@TylerBlah 4 жыл бұрын

Yes they're great aren't they!!!

@mar_zwierz 4 жыл бұрын

Stay strong Tyler, I’m glad that you are feeling better and I wish you all the best ❤️ Your bravery is very inspiring, I’m a first year med student

@TylerBlah 4 жыл бұрын

Thank you Martyna, I appreciate that a lot! And that's great you're a medical student too, I hope you're enjoying first year, I know I really did! :D

@juniorkilgore952 2 жыл бұрын

Tyler, you are looking. Great you doing good.

@sarahyeboah2498 4 жыл бұрын

YOU ARE AMAZING

@TylerBlah 4 жыл бұрын

Thank you Sarah!

@linda2468lou 4 жыл бұрын

Wow! Your story sounds like my husband's who also had cancer three times. He's been free of cancer for over 15 years now. He had Hodgkin's lymphoma, then two bouts of prostate cancer. It was a long tough journey. What saved him was the trial he was choosen to do. Turned out that he didn't get the placebo! It was a stem cell study, back in the day, a long time ago. Hang in there because there is good life after three cancers! Thirty years of good love! 😊

@TylerBlah 4 жыл бұрын

Wow that's amazing to hear Linda. I am so happy for your Husband, it sounds like he went through a lot there, so I am happy to hear how well he is doing now. I will definitely be aiming for that achievement, I am so happy for you both!

@josepharteaga2417 Жыл бұрын

Hello about to get a transplant in May. Thank you for sharing your story it’s really going to help me.

@ShaunaV 4 жыл бұрын

Hope your doing good mate looking forward to a update keep strong mate I’m in for my 3 months bone marrow biopsy soon🤞

@TylerBlah 4 жыл бұрын

Thank you Shauna V! Hope the biopsy goes well 😊

@menchieb4044 3 жыл бұрын

My son also need BMT ,but sad to say we have no money to do this procedure😢 he has acute lymphoblastic leukemia they relapse.Until now were looking for someone , a good samaritan ,some sponsor who's willing to help❤️ , to do his BMT .My son is only 15 years old.. I know one day God will answered our Prayers🙏 God is good all time. 🙏

@nnicollan 4 жыл бұрын

Thanks for the update. I feel very optimistic too after hearing all this although it truly sucks that you still have to battle cancer.. Enjoy your cheese!! Xxx

@TylerBlah 4 жыл бұрын

Thank you anni, definitely less than ideal, but always feeling positive and motivated :D

@leetuffin 3 жыл бұрын

Inspirational Tyler, I’m currently being treated for lymphoma and will have a stem cell transplant in the near future. Stay strong from a fellow lover of cheese!

@TylerBlah 3 жыл бұрын

Hope the treatment goes as minimally complicated as possible! And it’s always great to hear from another cheese lover :)

@ninadaggett 4 жыл бұрын

❤️ I’m so sorry about the PTLD, but I am glad you are symptom free, coz I know what its like to be months of vomiting and wanting to just stay in bed. You sound so strong. I wish the best for you. I had my transplant in October 2018 and its been a long journey, lots of fatigue and nausea and headaches. I had a couple stints in hospital but right now I’m doing okay besides the headaches and a bit of vision loss. I’ve just got the okay to be able to start slowly going back to work even if its just a few hours a week to start with. Enjoy your cheese!

@TylerBlah 4 жыл бұрын

That's great to hear you've been okay'd to return to work. That's a major achievement during transplant. Sorry to hear about the headaches and vision loss, it sucks that there are still problems that far after transplant. But I am so happy to hear you're doing better! and thanks, I will enjoy the cheese for sure! :D

@pocetnick 4 жыл бұрын

I am so sorry to hear that, Tyler. I have / had AML t(8;21) and a myeloid sarcoma. I went into morphological remission after two inductions (AraC, Dauno) - a few consolidation cycles (HiDAC) followed. Unfortunately the myeloid sarcoma wasn't completely gone, and I also had increasing MRD levels; so an alloSCT was planned and carried out. I am almost day 100 now. So far no significant complications (no infections, no mrd, blood counts are normal and stable). We are going to do a PET-CT soon to check the sarcoma. I know what is behind you and I really wish you the best. You deserve it.

@randolphharrison4219 4 жыл бұрын

Hey fellow 8;21 friend !

@TylerBlah 4 жыл бұрын

Thank you so much for a sharing that! Sounds like we are around similar time periods for recovery after transplants, as I am having a PET-CT soon to check my lymphoma. I am happy to hear you have had no significant complications, thats really great, as it just makes the experience better for you! All my strength to you for a continued recovery, and good luck for the PET scan :D

@reneelanier3475 4 жыл бұрын

❤️

@AjaySensei 4 жыл бұрын

Hey man you'll beat this! I'm in the hospital about to get a BMT on August 28th. Hoping that I'll never have to deal with cancer again. Keep us updated man. You're an inspiration and will be an amazing doctor! I hope to be a doctor and help others with this as well.

@TylerBlah 4 жыл бұрын

Thank you ! I hope your transplant has gone great, and a few days out you are still feeling well. I understand it can sometimes be difficult just after transplant so all my strength to you during this time and I hope it goes great :D

@AjaySensei 4 жыл бұрын

@@TylerBlah I'm on day +4 and haven't really felt any side effects so i'll consider myself very blessed for that. Hopefully by day +21 i'll be 100% chimerism. I used cord blood stem cells for my BMT instead of a regular donor so it takes a little bit longer to engraft.

@AjaySensei 3 жыл бұрын

@hbrs arsm Hey! I'm doing well. No GVHD, applying for medical schools currently :) I'm on day +621 now and life is pretty normal. Very grateful to have gotten through it all with little side effects.

@ananiazi8749 4 жыл бұрын

All the best bro...my brother is going to recieve BMT ...i am so nervous

@lesliep93 4 жыл бұрын

Hi Tyler! I was diagnosed with aml in March of this year and I’ve got one more round of chemo to go. I’m hoping and praying that the chemo will be all that I’ll need. I appreciate your videos because there’s not a lot of content out there from people with this exact diagnosis. I will be praying for you as well and I wish you all the best on this new journey.

@TylerBlah 4 жыл бұрын

Hi! Thanks for watching. Good luck with your next round of chemotherapy! Hope your recovery goes smoothly and with minimal complications :)

@lesliep93 4 жыл бұрын

Tyler Blah thanks so much!

@lesliep93 4 жыл бұрын

Hi Tyler! I hope you are still doing well. I have a question. Did you learn that you have any certain mutations when your chromosome analysis was done?

@johnnyblaze522 Жыл бұрын

Venetoclax 👍

@temovantongeren7639 4 жыл бұрын

Good to see you again mate well that’s good and bad news but like you say you will beat it again look forward to more of your videos I’m still in my first remission after just chemo for inversion 16 aml 2 months out after my 5 cycles waiting for my bmb results Take care

@TylerBlah 4 жыл бұрын

Yes, its good to be back, hopefully more frequent videos too now. Congratulations on your bmb results, that is so good! I am so happy to hear it, and look forward to hearing more success as the weeks pass.

@michaelkertson8167 3 жыл бұрын

I got diagnosed this year on April 24th, I went into the hospital for a little shoulder pain and was told when they came back I have Philadelphia chromosome ALL (Acute lymphoblastic leukemia) I’ve been receiving treatments and am about to go through transplant here within the up coming weeks. I’m extremely nervous and worried. I hope everything goes as planned and hope you are able to receive a speedy recovery too

@TylerBlah 3 жыл бұрын

Good luck for your transplant! I hope you have minimal complications and a smooth recovery! :)

@michaelkertson8167 2 жыл бұрын

@@TylerBlah I went through my transplant in November 2020, I’m cancer free now. I had a big flare up for some GVHD and just before my transplant I had a massive blood clot in my neck and was intubated for 3 days. I got out of the hospital and came home in late February this year. I made it through my transplant only with GVHD flare up and I’ve been cancer free since January

@darleneklonk9128 4 жыл бұрын

Many prayers for you. My daughter was not so fortunate. She was diagnosed January 3 2018. Her AML went right into her CNS.....only less than 2% of the time with AML. She had the multiple complex mutation type that had a very high recurrence rate. They went ahead with her transplant...but it came right back in 8 weeks. She passed 3 months after her transplant August 23 2018....very peacefully. She was 38. The younger you are...the better chance you have. Your life is in our Lord Jesus's hands...always put your trust in Him. He is still in complete control of everything and we must trust him with every outcome. Many prayers for you my friend. She WAS a warrior just like you. She never complained and accepted her death without ever complaining throughout her 8 month battle....her faith in Christ never waivered. Our destiny is in Jesus's hands.

@TylerBlah 4 жыл бұрын

Thank you so much for sharing Darlene, I am sorry to hear of your daughter's journey, but I imagine she was so strong during all of this. Just like all the warrior's are during their journey with AML. Thank you so much though for sharing it, it means a lot.

@darleneklonk9128 4 жыл бұрын

@@TylerBlah Continued prayers for you my friend. She was so brave and never would admit that she wasn't going to beat AML. She might not have won the battle...but she has won the war and enjoying her life with Christ in her mansion....I will join her when it is my time to leave this earth. All of our lives are in Christ's hands. My favorite Bible verse is To live is Christ...but to die is great gain.

@hanna78101 4 жыл бұрын

I am an aml patient and had transplant on 29 11 2019 but my aml relapsed within 50 days. Right now am very shattered and feeling helpless

@sabasiddiqui429 9 ай бұрын

@@hanna78101hello, how have you been doing?

@Isabelly 4 жыл бұрын

Very happy you had your transplant, I am sorry about this new diagnosis for PTLD. You will kick this one as well, you got this. And I just can't with that cat and that Gudetama. Precious egg.

@amaniteflamboyante9037 4 жыл бұрын

Sorry to contact you, but I have been trying to add a comment to Tyler's latest video but I can't anymore. I am a subscriber to his channel and I used to be able to add commentaries, but I can't anymore. I get an error message and I don't know what to do to correct the problem.....If there is anything you can do to help me solve my problem, it would be greatly appreciated.....

@Isabelly 4 жыл бұрын

@@amaniteflamboyante9037 I am so sorry about your comment problem! I am actually not sure why you are getting the error message :(. I just checked and comments are still turned on for this video so you shouldn't, in theory, have problems posting. I am sorry I was not of much help :

@amaniteflamboyante9037 4 жыл бұрын

@@Isabelly Thank you Isabel....the source of the problem is possibly my Google or KZfaq account....they change these things often, I can't keep up ! Especially since I'm no computer whiz....oh well too bad....I wanted to share my personnal experience with stem cell transplant but I won't be able to....Have a good day

@TylerBlah 4 жыл бұрын

Thank you Isabel ! Feeling positive and motivated as always and keen to beat this thing soon. And thank you my cat and Gudetama are very special to me so they always will have a feature some how :D

@TylerBlah 4 жыл бұрын

@@amaniteflamboyante9037 So sorry to hear you are having these issues! I hope it resolves, and yes comments are always on for these videos as I value everyones coments and stories so much! Feel free to leave it here if that works as I'd love to hear your experience :)

@josegilbert6355 3 жыл бұрын

im going to be going through a transplant within the next few months when my wbc levels off

@TylerBlah 3 жыл бұрын

All my strength to you in this one Jose.

@jimmyjohnstone7258 4 жыл бұрын

Surely the docs should have suspected the PTLD and fully investigated at your first presentation with abdominal pain. Not sent you off to suffer for weeks until eventually finding confirmation.

@TylerBlah 4 жыл бұрын

Unfortunately the symptoms started so early, before the macroscopic changes could be seen in any scans, and no blood chemistries were changing either. It was very much a matter of unfortunate circumstances, but thankfully I kept presenting until it finally appeared on CT and we could start treatment asap :)

@Kaashworld07 8 ай бұрын

Which treatment you have received

@xElleRyuzaki 4 жыл бұрын

Hi, i pray for you to recover as fast as posible. As far as i know there haven't been new treatments right? Apart of chemo and the transplant. I'm waiting for the aproval of some new drugs for aml and cml , the doctors have told you something about new treatments in a 2-3 years period of time?

@TylerBlah 4 жыл бұрын

Hey Fer. Yes you're right, the treatment for AML is very much chemotherapy and transplant. But for the PTLD there have been some new emerging methods for treatment that we are trialling 😊

@xElleRyuzaki 4 жыл бұрын

@@TylerBlah thanks for answer! i hope those treatments go well for you !

@rilaakhanniazi3566 4 жыл бұрын

how are u feeling now bro

@josegilbert6355 3 жыл бұрын

hey tyler my name is jose gilbert. i just found your videos! i wanna know how you do it? i was also just diagnosed with cml in blast crisis!!!just watching your video gives me hope.. you are strong , motivated, from what i see!! im just trying to reach out for support and just someone to talk to

@TylerBlah 2 жыл бұрын

Hey Jose! How are you going now ?

@Cassek 2 жыл бұрын

I leave Thursday and treatment starts Friday. Time flew and getting nervous as hell!! How have you been??

@IfahLatifah 4 жыл бұрын

Hi Tyler, I have same symptoms like you, nausea and vormiting in 3 months post transplant, large spleen than normal. And doctor expect it is PTLD. What treatment that you get? Is it in hospital or homecare?

@TylerBlah 4 жыл бұрын

Hi Ifah. I had T Cell therapy through IV infusions from an American company, I can't recall the name. But they are sponsoring the trial to occur internationally. Enquire with your team how they can treat it, as it can often be treated with Chemotherapy too. There are a lot variables for each individual case of course. Good luck and keep me posted!

@TheOraeFamily 4 жыл бұрын

So happy that you are feeling better. Do you want us to send you some excellent Dutch cheese? 😉😊

@TylerBlah 4 жыл бұрын

Thank you Niloufar! Oh wow, Dutch cheese is always welcome ! :P

@anujaiswal1691 6 ай бұрын

Hi. Did you ever gone through Amnesia after transplant? If yes, how it resolved?

@tamaraaustin9838 3 жыл бұрын

Your video has really helped me. My son was just diagnosed. Your symptoms of PTLD is exactly what my son is experiencing. How is everything with you now? Thank you for this video 🙏

@TylerBlah 3 жыл бұрын

My strength is with you and your son right now! I am going very well now. As close to normal as I could have hoped I’d say!

@theyashgarwl 3 жыл бұрын

After how many days of transplant you were stayed away from people?

@TylerBlah 3 жыл бұрын

I avoided seeing others up to around the day +50 mark, then I only saw close friends. And after day +100 I started to see more. But I always remained vigilant :)