My Cancer Relapse & BMT | Leukaemia | Acute Myeloid Leukaemia (AML) | Cancer
ฝัง
- เผยแพร่เมื่อ 25 ก.พ. 2019
- Here's the results of my bone marrow biopsy.
Australians interested in registering for the bone marrow registry;
www.donateblood.com.au/learn/...
Americans interested in registering for the one marrow registry;
www.dkms.org/en/register
Music:
Benny Martin Piano
LADY GAGA & BRADLEY COOPER - SHALLOW (From "A STAR IS BORN") (PIANO INSTRUMENTAL COVER)
/ lady-gaga-bradley-coop...
Don't give in, don't give up.
- Dan "Peeweetoms" Thomas
We're with you. ❤
Thank you Craig :) Love the quote, and Peeweetoms
We're Def crash this cancer
I know , how you feel, I had a bone unrelated transplant
. And dont be sorry. You can beat this.
Hello brother, I was diagnosed about 2 months ago with AML and been through three rounds of chemo (including the one you're getting atm). No hair on my head and little to NO energy. I'm set to receive a bone narrow transplant in the middle of march so I know what you're going through. I'm only 24 and I don't feel like letting go and you surely don't. Everything is gonna be fine mate. If you ever wanna talk about it I'll be glad if you want to share your experience with me. My name is Jerome btw. Take care.
Hi Jerome! Thanks for commenting and sharing your story! It is so amazing to hear what you're going through, and I'm 24 too. Crazy to think how similar our experiences can be. Hope you've started to gain your energy now and that you're feeling better :)
Hey mate. I was told about your story by a friend who follows my own journey. I'm so sorry about what you've been through and what you have to go through now.
I was diagnosed with AML at 17, before med school, and study med now (though that's been on and off with the whole health stuff... it's a long story to be sure). I know you're also a med student. It sucks that this has to happen and that you have to go through this all in the first place. But it's great to see a community behind you in this.
I'm also based in Sydney, and would be happy to meet if you ever wanted to. I'll reach out for sure and help in any way I can really.
Thanks for sharing your journey. You're definitely impacting others as well.
We're all rooting for you and praying for your full recovery!
Thank you Cindy :)
Praying so hard for you!! You are so strong and you're gonna kick this thing in the a$$!
Thank you Marsha :)
It’s so touching. Presently I’m on haematology and oncology ward. So I can relate on what you’re going through. Don’t worry because your result be become victorious. Sending lots of love and hugs to you all out there going through this challenging trials.❤🙏💪
Thank you for sharing your story. You are in my thoughts. You are young and will get through this 🙏🙏🙏.
Thank you Ruby ! :D
Wishing you peace as you wait for your transplant 😊
Thank you Betsy :)
Stay strong and a big hug!
Our prayers for you my dear brother... Be strong 💪🏻 GOD BLESS YOU....
Thank you AMURDHA NALEN :)
Tyler you're sooooo strong keep fighting mate head up you have so much ahead of you... Just remember you're human and it's ok to express your emotions, you are truly a inspiration xx
Thank you MB Bunch! I really value your comments and support 😊😊
I hope youre okay now. My son had AML when he was 19 in 2019.
It DOES suck. Thinking of you. You are very strong and you will smash this xx
Thank you Caroline :)
Omg this touched me. I'm praying for you. Every thing is gonna be good🙏❤
Thank you Tee winns :)
@@TylerBlah you're welcome
Dear Tyler,
I’m watching your videos since Ivan alerted me. You’re so brave and I congratulate you on being so brave in facing such a difficult illness . I wish you successful treatment and the very best in 2019 year. ❤️
Thank you as always Jagoda :)
My husband is undergoing ALL chemo for the past two months, and I'm so scared :( I just wanted to thank you for bringing me strenght through your videos. Cheers from Brazil
Stay strong prayers being sent from US! You will beat this!
Thank you Leah :)
Never apologize for showing emotion. This is the path you have to go through, it sucks, but you can do it. Thank you for posting. You're in my thoughts**
Thank you anni :)
Great video - thank you for sharing my husband has just been diagnosed with AML and he also has couple of brain lesions - 1 lesion been removed so far.
All my strength to you and your husband! It's a difficult time I can imagine, and always feel free to come by the channel for a chat !
Sending good vibes your way to knock that cancer out.😍
Thank you :)
Oh no, I am so sad to hear you have hit another bump in the road to recovery. I will continue to pray for you.
Funny how you mentioned allergies after transplant. My best friend had a bone marrow transplant following her diagnosis of acute myeloid Leukaemia and ended up with a peanut allergy. That was 25 years ago now and she is happy and healthy to this day. She beat it and you can too. ❤️
Wow that's such good news about your friend! I hope I get that lucky, and am feeling confident in it too :)
I was praying for you just yesterday and I feel like you’ve got this. It’s just a bump in the road to a full recovery
Send your number maim
Re watching this October 2020 and you saying 2019 is going to be a big year made me laugh a bit.
I have CML, having a BMT in November.
Your video's have really helped me! Thank you!
Haha yeah 2020 was a bit of a different year right! Good luck for your upcoming BMT! Get all of your strength beforehand (ie eat! :P ) And I hope your recovery is with minimal complications :)
Hi Tyler I randomly came across your channel. I’m a registered member of DKMS (US) for a couple of years now. I know it’s a slim chance to be a match with another person but I hope some day I’d be able to help someone in need. I wish the very best for you! You’ll beat this!
That's great to hear ! It's an amazing thing to offer someone and a life changing experience.
Hey Big Guy, I have AML & I guess the CMR variant and just finished 3 rounds of somewhat easy to handle chemo with Aza and Ventoclax in pill format that was showing excellent progress. However, I just learned today that either I relapsed or there was residual enough to hold the transplant that was going to happen in just a few weeks. Regardless, I would assume the same emotions kicked in today from nowhere since I felt like I was winning the race but tripped on a crack. Anyway, I looked back at your video's to get inspired again and wasn't aware that you had received the same kind of delay. To be honest it's kind of a tuff journey for a 52 yr Old with ADDHD & Nobody to Relate so I appreciate the video's deeply (They Give People Strength to Fight).
Sending you love and hugs from me and our entire cohort Tyler.
Unfortunately i am intelligible to be an donor, but i am encouraging others to register.
Thank you Erol ! :D
Tyler, you're a strong, young and healthy person. You'll live a long vibrant healthy life, God willing.
Praying for all that have been diagnosed with this disease(AML) or any disease. But know that God is still with you during these trials. Sometimes we go through these things to strengthen the faith of someone else or to make us stronger and closer to God. Keep the faith and rely on the capable hands of your physician. Pray for them always and watch God work.
Keep fighting! You got this!
Thank you Beatrice ! :)
Just wanted to let you know that I was looking for information for becoming a bone marrow donor when I found your videos. You finished convincing me to donate so maybe you helped save a life. Hope to be matched 🤞🏻
Audrey thanks for being a superhero! The choice you’ve made to help someone can truly save someone’s life as it has saved my life before. Thank you from an ex cancer patient 🎉🎉🎉🎉😊😊
Sweet emotion ❤️ 2019 IS going to be the best year in your life- that’s the year in which you CRUSH leukemia! 👊
Loads of light & love from Florida 💪🏽
Thank you Eliza!
Best of luck to you. My husband just relapsed 6 years after his first SCT. He is now Day +64 after his second transplant. Can relate so much to your story.
Wow amazing to hear HeatherAnn1055. Do send my luck to your husband! I hope he is feeling good and gaining energy every day!
Hi Tyler, amazing to see now that 2019 was a good year for you as you predicted and i hope you are doing well and stay Leukaemia free!
I wanted to ask you, after how many months did you get the Transplant after receiving the Flag-Ida regime? Did you have time between them?
Hi Tyler, I work in hematology and see every day that wonderful advances are being made. I also come across people who've had bone marrow transplants in the past, healthy, happy, and looking like you or me. Your youth is a big plus, and when you are an old man you will look back upon your big victory. I'm a member of the registry. If we happen to be a match, I most certainly would say yes.
Thank you James ! :) So great to hear that, and I love the old man perspective :D Definitely makes me feel positive about it :D
You are truly an amazing human James Sanchez! Such kind words to this young man. ❤
😢 Almost at 5 year mark , are not? Means good news and you done well.
Unknown to me a friend passed 2022 with AML, while I my BMT for function high risk myeloma. Currently 1 year and 6 months on going CR.😮
I'm 25 years old And I was diagnosed with AML a couple months ago, and I'm currently awaiting a transplant as well. And believe me although it's the best solution definitely not excited about it because of what you need to go through. This journey is hard Iong and very frustrating at times, no matter where we are located on earth we all need to stick together and encourage each other! Stay strong and GOD bless you
Hey, how are you doing now?
I'm 26 with cml, about to do bmt.
I was diagnosed with AML on sept 3rd 2020 and am in remission now. I have my final biopsy in two weeks to check and see if i need a transplant. Stay strong man and i really hope it all went well for you. Its a tough time but stay strong and i know you will beat this!!
Ask your doctor about Venetoclax , it is a new drug that is really healling completely
Yes.. Azacitidine with venetoclax is amazing.. i was diagnosed with AML in April 2022 .. when intensive chemotherapy fails to respond.. it’s aza and venetoclax tht helps me nd now i m in remission state
I went into the hospital on Jan 19th for my bone marrow transplant and am now home and regaining my strength. It wasn’t too bad at all. The hospital stay was the worst..just being so long. No new allergies so far and also no signs of graf vs. host. You got this!
That sounds like you did so well! Congratulations :) I hope for that smooth ride!
I just made a TH-cam video about my experience! And I’m sure yours will!
Will check it out! :)
@@hopefightsback7808good to hear that..how are you now
God bless you. You are entitled to feel a bit overwhelmed. But, I have a lot of faith in modern medicine, you live in a time of the best possible treatments being available, you practically live in the future of modern medicine...., and I feel great hope for you! I wouldn't be surprised, at all... if you DO beat this! You are brave, strong, young and so, so smart. If anyone can beat this, it's you. Surely! I am so glad you will keep us all updated, and take us along with you on your journey, as it's so interesting, and I know it can be so tough at times. You have all my compassion. You make wonderful videos. I love your editing style. I will tuck you tight into my daily prayers from now on, Tyler. I am looking forward to your next video. Keep the videos coming!
Thank you so much for the message! It means a lot. I am feeling positive for my upcoming treatments and am keen for it all to be behind me !
@@TylerBlah Do you think you could do a video on what is involved in a person, registering to become a stem cell donor. If people could see that it wasn't a painful or elaborate process, more people might sign up. It would make a good video to have publicly available. You could even include links that help folks in the description of the video. I realise the process might be different in Australia to America.
@@blueskyswan Great idea! Will definitely look into it :)
Hope you are well today Tyler.
Heart touching. I am just like you
Hi Tyler.
thank you so much for sharing. It helps me so much in terms of preparing for my transplant on 26/4. I have VSAA and PNH. Thanks again and wish you all the best. Love from Denmark.
Wow in 3 days time! All my luck to you, it’s so soon. I hope you recover quickly and have minimal side effects. Very excited to hear back from you 😊
God Bless you🙏
Mate!!! 😥 Researching donor criteria right after this. Big hugs - hope to catch up if you're taking visitors. 💙👍
Thanks as always Beat Therapy :) Would love to catch up actually! :D But have returned to Sydney ! :/ Will let you know when I return north :D
Big hugs🤗💖
Sending you ❤️ your already a conqueror you’ve already beat it ! Just believe it x
Thank you Santeena!
My daugher 10yrs diagnosed AML last feb.last year but sad to say,shes gone last nov.on that yr 9mons battling to survive .its difficult to us to accept,we're trying our best,😢😢she never got bone marrow transplant bcause here in the philipines ,bone marrow is very expensive...😢😢hopefully someday will be avail.her also in the phil.💔💔💔
You are amazing and brave x we’re all here and help you fight it x bone marrow doners are they better from men ?? I sure I read it somewhere xx
I am not sure about gender preference for donors, but think it is a good donor can be a good donor, without gender preference. But I will ask my doctors ! :) Great question!
❤️stay strong❤️
Thank you MaKenna :)
Heartbreaking. Tyler you so corageous , brave, & a fighter for life. Prayers go for you. Make the next journey , beat it I love you man.Thinking you always. Please up date me please my good man good people person. I cry with you and is good share your emotions and you cope better the time journey. Get excellent recovery and have best healing and healty to recovery. I am with you, for you , there for you and in mu mind thoughts. I love you man my best good friend and enjoy you. Thank you Tyler. Until then-later. 😭😭😭😭😭😭😝💞🙏🥰🤔👍
I do believe that all healthy adults should be part of the Marrow registry in their country. I think we could all save so many lives if that was the case. For the US- I urge people to join the Bone marrow registry- Be the match. Tyler, show ALL the emotion, and never apologize for that. Also, I LOVE your Mario shirt :)
Thanks Isabel! I do like this shirt too :)
Uh as for joining the bone marrow registry, no fucking way. Why don't you do it
I was diagnosed with T-lymphoblastic leukemia/lymphoma In 2022, I had to take a year off university to start chemotherapy. I'm now in remission and going to get a steam cell transplant and to be honest I'm little scared but I belive Allah will be with me and will give me strength to get over this. Take care I'm sure you will get over this
Ask my strength to you on this! 🙌
🙏🙏🙏💯🙏🙏🙏 you got this!
I hit my 1 year mark of my bone marrow transplant on September 2nd so they are going to do the bone marrow biopsy on August 30th this year. I'm praying that I stay in remission.
What is the cost of transplant. In Which hospital u had it. Were u suffering from CML
@@Hodophilicvibes the video is on AML so I had the same AML. Cost, insurance covered most of it so I didn't have to worry about it. Finding a donor was hard. Everyone in my family including my parents were only a 50% match. They found my matching donor all the way in Switzerland. After the transplant, you go through a lot of graft vs host disease and could just die from that if it gets too severe. For now I'm stuck with less severe things like eczema and dandruff and some minor things.
Hope you're doing okay.
Thanks Grahame feeling good
You don’t have to say sorry for that. Stay strong😢
Thank you Khidir habil
I really wish I could be a donor! I'm in horrendous health though. I have Ehlers Danlos Syndrome, Dysautonomia, and POTS which have caused me to become disabled after working as a nurse for 6 years. I'm sure no one would want my horrific genetics of any sort anyway lol but I am contemplating donating my body to a teaching hospital if I can't be an organ donor.
Wow it sounds like you’ve been through a lot with that. So happy to hear you were a nurse 👍💪
I was not a match for my sister who had AML with the flt3 mutation, but someone else was a perfect match for her. I did end up being a match for someone 2 years later since I kept my info available in the registry. I hope the person who got my stem cells made a full recovery - and I apologize to them for my slight allergy to latex :)
It was not a painful process to donate, a minor inconvenience relative to the good it does someone else, please if you can, register yourself!
Could describe the process of getting on the register? What's involved? Does it hurt?
@@blueskyswan No pain at all! I signed up online - (I used Bethematch .com in America) They sent me a kit with big swabs, like Q-Tips to take saliva sample from the inside of both my cheeks. I did that and sent it back. About a year later, they sent me an email saying I matched someone and send me a package with I think 3 or 4 predone vials for blood. I went to my local primary care where the nurse drew the vials, and followed the instructions for repackaging and labeling. Put them back in the package, and took it to FedEx overnight. It was all paid for and prelabeled, no cost to me at all. A couple weeks later, the further blood testing said I was an exact match 10/10 for a person in a hospital in Hershey, PA - which was nice because I live about an hour and a half from there. A couple weeks later, I drove to the hospital, sat in a comfy chair, they gave me 2 injections to make my body create more stem cells, then they put an IV in both arms and hooked me up to a machine that on one side took my blood out, removed the stem cells, and the other put it back in. After that was finished, I drove home and took a nap. I felt tired and a little joint pain for a few days but that was it, I still did all my normal things.
wow. That is fascinating! So that is how it's done! I will google this for my area now! Thanks so much for that information!
Wow! That is so great to hear about your sister, and you're chance to donate! It really is amazing how things can work out.I hope your sister is doing well now after the transplant
She was 32 at the time, the docs said age was a huge factor in how well she did. Very small graft vs. host complications! It wasn't totally smooth sailing, but 5 years on she is living her best life, even after several relapses before the transplant. Also, from the vast research I've done on AML after her diagnosis, I learned that Australia is one of the countries at the forefront of advanced treatment in the world, far superior to America in a lot of ways. Our parents took the role of emotional and financial support for her, I lived really far away at the time and although we talked and emailed it just wasn't the same as physically being there for her so I took the role of chief researcher because of the flt3 situation, her aml was considered rare and aggressive (not that aml isn't rare and aggressive enough for a young person as I'm sure you know lol). Tyler, there is hope and at least one real person success story out there - I'm sure you will overcome this!! Thank you so much for doing this vlog for so many reasons!! You are a true warrior and we all loudly emote with you, FUCK CANCER!! Sending all my love and strength!
I am in remision from Non Hodgkins Lymphoma. I am considering stem cell transplant, but are not confident going ahead with the transplant. Please can you share the procedure you went through for your bone marrow transplant and what precautions i need to be aware of with a transplant. May God cure you from Cancer. Thank you
Hey Idnan, each transplatn procedure can be very different. However I did generate a vlog where I went through my own transplant if you wanted to watch it :)
I’m sorry to hear the news. You’re a young, otherwise healthy man, you will get through all this!..
Have they found AML to sometimes be connected to other family members? My Dad had AML but he was 70 when he got it.
jodykeo _
Hi, when I was diagnosed on June 25, 2018 the Doctors confirmed that AML is not hereditary and I made a huge sigh of relief as I have a 2yo son and 5yo daughter. So your odds are the same as any other healthy person.
Hi jodykeo, thank you for the comment. Yes as Joe N said, it is not hereditary, and has a random distribution! Great question though
sorry sweetie keep the faith
Thank you Debbie :)
hi i live in the uk, 1st may i say thanks for your blogs, iam going through the same ,but age is not on my side been 60years old , i have AML with blasts ,had 2 cemo . but lost a lot of weight from 80kl to 60kl , but iam now 70kl and transplant any day now . and not looking forward to it ,but told only chance i have .i wauld like to say thanks to you ,and my you live a long and happy life .thhanks ian
Because of BMT, I developed an allergy to shellfish. I haven't eaten an oyster in more than 20 years!
Thats interesting. I have heard of people gaining allergies in the instance of a BMT. I hope you didn't like oysters, but thanks for sharing. It will help others out a lot
Bro how i can find a match donor if havent had in sibling does it possible in uk itlay to brig back to pakistan alm positive and relaped after 5mnth wd blast of 42percent at 20yrs of age plz for BMT need ur reply need match donor how it possible
🙏🙏🙏
Thank you Nia Moran :)
So, have you got your bone marrow, how is the situation now?
🙏🏻🙏🏻🙏🏻
Thank you Wendy :)
*Hugs*
Thank you Grahame :)
Are you fine now.. did you prescribed TKI therapy at first
How long were you in remission with just the chemo
what were your transcript lvls (mrd) at the beginning, after chemo treatment, progress till to today? i am asking, because i am walking in your shoes right now. thank you, i wished i could contribute like you do, but unfortunately i am not made for this...
Thank you solomono! When I was diagnosed last year it was 33% by qPCR. We got it to 0.017% after the 5 rounds of chemotherapy, and this year we started treatment with it at 11% on qPCR. It was negative on all morphology tests though. How are your mrd's?
Tyler Blah
Hay mate it’s damian again iv just found out my blast was .004 after induction and now it’s .174 after my 1st consolidation I’m on my 3rd now but haven’t received results for them did you get to stop treatment and live your live after the 5th treatment? And just see how it went or did you end up getting it down to .00 I really want to know because I have no matches on the register for bone marrow transplants and just wondering how you went
@@temovantongeren7639 hey, yeah so after 5 rounds of HiDAC we got as low as 0.017%. But then the relapse happened, interestingly though, in preparation for transplant, my indication round for that (Flag-IDA) brought me into the negatives for the first time
Tyler Blah great at lest your finally .000 I’m hoping to be lower with the next test comes back in few weeks good luck mate did you know any of your early results like did it start high and go down to .017
Brother, iam 16 years old now was diagnosed with AML on 22 feb 2020 iam in full remmision it has been over a year since remmision iam very insecure about talking about this and frightned about relapse even if it is 20%, and my survival, how can i make the relapse chances less and prolong my survival i need some assistance here, thank you and much love ❤❤
Have just replied in the most recent comment 👌
Bro how did u come know the disease? What were the symptoms?
I have released a video last week that hopefully covers this for you! It's called My Leukaemia Symptoms :)
Is there anything we can send you?
Thank you Lynn! I have an amazing support network right now so am good so far. Just enjoying making these videos, and connecting with everyone here :)
❤️🙏🙏🙏🙏🙏🙏🙏❤️
Thank you Renee :)
Hiya. Just started subscribing. I'm thinking of you. If there is anything I can do to help, please let me know. Keep fighting.
Thank you Lynn :D
Donate me midostaurin or gilteritinib drugs to fight with cancer AML FLT3 positive
I'm sorry I don't understand why you're calling this a relapse is that what the doctors called it? What is the percentage?
EDIT: I just realized after re-watching this vid at 1:13 what is about. I'm still curious what your doctor's had told you though. I recently had a bmb and had a similar result for B cell ALL after having been in remission for a little over a year. An appointment has been set to discuss transplant. I'm lucky to have a sibling that's a 100% match. Anyway, your videos are inspiring, hoping to see more and more...
Doctors explained the procedure and risks, and then on check up we found that there is molecular evidence of disease. Meaning we would advance to transplant to treat it, which so far has worked well 👌👍
@@TylerBlah great to hear! I hope for your continued success! I feel like basically the same thing was found in my bone marrow--percentage wise. (0.556) but my doctors only wanted to DISCUSS transplant, not call it a relapse. And at this point I'm just being watched closely every chemo appointment.
I live in the US, btw.
And... update: just got out of the hospital a day ago. And it was a full-on relapse that forced me to stay there for nearly a week. Now I too will have to undergo transplant in the future just like you did.
@@starvingartist535 hey how r u doing? I too just relaped from all im getting a transplant too after 2 years of remission i hope all is going well
@@alexysaguilera3949 I was actually told yesterday that I'm MRD-negative from 3 blincyto cycles but will still have to undergo transplant bc I had relapsed back in May
Hey I'm just 22 and I have been diagnosed with CML with blast crisis....as I know we're somewhat of same age so how did you get financial help?? I din have insurance or anything so this has been really tough for me
Hey Nazmeen. Man financially it is so difficult. I've I'd to do a lot of GoFundMe and then friends have done fundraisers too which has been significantly helpful. Otherwise also relying on family a lot more. Personally I moved out at a really young age, but when this all happened I had to move back home obviously. I hope that helped
I'm so glad that you are doing well now.....and when u got emotional on your video of transplant is everything...I mean I even cry when I have to get admitted and I thought I'm just really weak but if a medical background person can cry I'm sure it's normal .....any tips on how to get emotionally stable??
Nazmeen, my advice is don't get emotionally stable during this. Crying and just having those days where you cry for no reason I have found very therapeutic. And even now 1 year post I am still having some days like that.
What we have been through and go through is emotional. And we are stronger by embracing it! 😊😊 Always send me a message/a comment and we can talk about it all and anything
@@nazmeensayed1092 are you there
@@Hodophilicvibes yes?
XX
Tyler how are you cancer free ?
Hi Mordy. I had chemotherapy and a Bone Marrow Transplant which seems to have kept it in remission! :)
That's awesome to hear thank g-d how old are you also did it hurt having the bone marrow transplant?
I am now 25, I was diagnosed with AML at 23, have my transplant at 24.
And no painless. It's very similar to a blood transfusion. They just hang the sample up, and then it goes into your cannula :) @@mr-yy8sd
Can I ask you a personal question you don't have to answer if you don't want to when you lose your hair during chemo do you also lose under your arm pits and in your private area down there?
Very reasonable question, and one I am asked many times. You lose hair anywhere and everywhere, as it depends on the individual person. So some people lose a little hair, others lose it all. It very much varies!
Bro ur aml type like m0,, 1,,2,,3,,,
My AML type was Inv 16 cbf. This type doesn’t use the m0 etc scale