I was diagnosed last June 2nd and was later told at the time of my diagnosis I had maybe 1 to 2 wks to live. I have been horrified at that ever since they told me. My AML was a sudden mutation of FLT3 (fleet3) gene. I wen through 2 phases of chemo and an 11 day in-patient stay due to fever and an infection. Then they said after all that it was in my best interest to have a stem cell transplant from a donor because of the odds of relapse. Well, I am now +123 days out since my stem cell transplant and making a very good recovery. You’ve got hope mate! Don’t let it get you down and keep fighting!!!
Matt Howell hi Matt I seem to have the same as you aml FLT3 and idh2 diagnosed March 5 transplant with my sister 100% match doner in June. Would you mind terribly my asking your age? I’m 69!
the fact that you have the empathic space to consider so carefully the feelings of the people in your life when you tell them your diagnosis speaks volumes about your strength of character. I hope you're doing well!
FAQ! I am sorry I forgot to include it in the video! What made me get a blood test? I had a developed a slight cough, with about 3kgs lost over 7days. With these combined I had requested a blood test. This was then forwarded to Haematology. Hope that fills in the gap. Sorry for missing it in the video!!!
Tyler Blah my husband have Aml and he receive his first chemotherapy we don’t know what’s happened next I have too small kids one 2 years and 4 years old .we are so worried
I’ve been battling ALL ( acute lymphoblastic leukemia ) for a year and 1/2, and all I can just say to you is that you are so incredibly strong, I know that it’s hard to stay positive, but keep pushing and know there’s a light at the end of the tunnel :)
I also have leukemia, I have cml - chronic myeloid Leukemia. I take medication to prevent it moving into aml. The bone marrow biopsy is a weird feeling isn’t it haha This definitely makes you a stronger person, it changed my life so much and now I appreciate things so much more now. Good luck in all your future treatments, hope it all goes well and stay positive. A good spirit can get you through such tough times 😃
Hey. Great to have you on the channel :) Yes bone biopsies always are weird! Thanks so much for sharing that you have CML. Thats so interesting to hear the different treatment approach. How long have you been diagnosed for ?
@@TylerBlah Tyler, Iam so happy for you!!! I hate hospitals, how the hell did you cope? Some of those doctors and nurses are so snotty, but I do think that nurses rock!!!
Allah swt says that He will never give us something we cant handle. Even when disagnosed with cancer people get stronger mentally and become better people.
Your insight and strength are inspiring. I found myself nodding in agreement at several points. I received my diagnosis over the phone as well. It was a different cancer, but also devastating. Yes, your life changes completely. I wish you and all the others who are "in the fight" all the best .
This is a brilliant video, thank you. We all have more and more friends having to go through this, and it could also happen to any of us at anytime ... Although we know and can imagine and empathise with what our friend is going through, your truthful detailed moment by moment narrative is incredibly helpful in really understanding it and guiding us. I hope you are still well and wish you all the very very best, and thank you again for this. 🌈
Hi Tyler; my daughter and I are very inspired by your videos. My wife was just diagnosed with AML and my daughter ran across your vlogs and they’ve given us hope. Your a real Saint that’s gone through hell & back. Thanks so much for sharing your history. It makes the pain a little easier to swallow and gives families hope and inspiration to succeed and fight like yourself. Did you have just AML or a specific sub type? My wife is diagnosed with just AML she has something up with her 7th chromosome. We’re early in the process and not quite sure what that means. She just finished her induction round but the mucus throat ulcers are unbearable for her. We can’t wait to show her your clogs but due to Covid she can have no visitors. It’s really hard on her and us. God Bless you and congrats on Notre Dame. Sincerely Chris & family
Hi Tyler. Just came across your video. Just diagnosed with aml flt3 mutation right after Christmas. Finished my induction called 7+3, and was in targeted therapy. 3 weeks at the hospital. Discharge then less than 24 hours at home came back for a covid pna. Stayed another 5 days. Now i am on my consolidation chemo as i am on remission. Waiting for a donor for bmt/stem cell. Your videos really really inspire me. Thank you.
To all people who have AML. STAY STRONG! I can feel you all! Just enjoy all your lives. After all, we are only human being in this world. There is no forever on earth. Living on earth as human is just an experience so you dont have to worry as long as there is LOVE inside your heart. All of you will be fine!
i have a leukemia last may 2020..chemotherapy...blood transfusion etc etc...june 9 was my 2nd bone marrow and bone marrow biopsy..so june 12, 2020 ....after the bone marrow results...i am now a cancer free🙏🙏🙏🙏 im an overseas filipino workers here in kuwait..thank you Lord...amen🙏🙏🙏
i lost my mother to aml 4 months back i dnt know why did it happen to her how could i have saved her i already lost my father in an accident i feel very empty and bad at times
Vidushri, I’m sorry for your loss and grief. I lost both of my parents a few years ago and both passed just 2 months apart. After their passing I no longer have their support in life but I did have them in spirit since my AML diagnosis last June I have been remembering their love for me and our memories. I don’t have the clear answer but I am sure your parents would want you to live a full life. You are alive now and try to make the most of it even if it’s just volunteering some of your time to a cause. Enjoy and do things your mother and father loved to do, rejoice in that love. Take care of yourself
Hi Tyler, Thank you so very much for sharing your story with people. You are an inspiration and I feel that by sharing this it will help so many people who are about to go through the same or starting their own journey xx
Hi mate how are you? Hope you going stay strong. My husband been diagnosed cmml last year on February.. But we hope he get a trials this month, it's really hard but because of you I will show to my husband how you been going through. I promise I will include all of you in my prayers. Thanks alot for sharing mate.
Thank you for sharing. I am newly diagnosed ALL and Lymphoma. I really appreciate what you said about staying strong for others. I also made a video because it made it easier to share. I hope you are doing well and thriving.
I commented on this video about a year ago.... thank you for giving me hope... sadly my mother passed away in February... I wish you the best.. and again thank you
Hi Jon. Thanks so much for coming back. I am sorry for the loss of your Mum, I hope you are going okay right now. But it's never fair to have to go through that. My sincerest apologies, and strength is with you Jon. Thank you for coming back to say hi though, I appreciate seeing and talking again :)
I am doing well now. I talked to others that lost there parents and it made me feel so much better. For weeks, I couldn't help but experience a huge weight off my shoulders which saddened me more. The weight I was experiencing when she was living had nothing to do with her luekemia at all.. at first I thought it was then I came to the realization that the weight was the unhealthy relationship my mother and I had. We argued constantly and we both felt like we were not good enough for one another. At the end I knew she forgave me and herself which was bliss for us. She went peacefully snoring away. I love and miss her dearly but my daughter is her living twin.... I mean personality exactly the same down to there blood type which is nuts.. ill pop up every once in a while. If there is a way I can donate stem cells for you I would love to see if I am a match or not. I'm O- if that helps.
My primary care doctor noticed some abnormalities in my blood work, and I have an appointment on Monday with an oncologist/hematologist. I’m a pre-med student in America. I’m very nervous for my appointment and I’m kind of in that point where you were in the beginning. I have a long history of cancer in my family, but I’m hoping it’s anything else. Thanks for making this video. I don’t know who to talk to about how I feel because I don’t want to make anything a big deal until it is.
Hey Alexsandra. Thanks for sharing what you're going through. Sorry for the delay in replying! Im glad you liked this video, and you are always stronger than you believe you were. Trust me on that one :) I hope you're going okay!
Your editing skills are really good you know. The sound effects ✨ your cat Merlin ✨ and don't forget the confidence talking in front of the camera ✨✨✨😌
This was so strong. How are you now ? My best friends brother is going through chemo himself. He was in remission for 10 years and unfortunately the cancer is back. He is 22 years old tomorrow. Any words or advice while he’s going through that. How do we make him feel better that made you feel better when you were.
I am currently preparing for a transplant, had some new videos explaining how its been going. To your best friends brother, I hope he is managing this with minimal side effects, and I think the best thing you can do for someone in this situation, is just be present. Which at times can be difficult when its going tough, but that's my best advice :)
To everyone reading this please turn to Jesus He loves you and wants to save you from what you are going through, He is the God of miracles, Only Jesus truly heals, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone I know from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you really want to know He will answer you, I know this because it happened to me when I called out to God
Amen, I was diagnosed with AML over a year and a half ago. I’m 76 years old and I know the Lord will use me to help others go through similar difficult times . I don’t know what the future holds but I know the one who does and I will trust and serve Jesus until He call’s me to my eternal home. Praise the Lord!
I have cml I went to the emergency room for fever chills pain and my wbc was over 100 I was able to get it into remission I’m 2023 for a few months it’s back and now I’m looking at new medication for 3 months and also another possibility of a transplant
I loved listening to you, it felt like someone understands me... or I understand you and feel your words in my bones...I was diagnosed with AML luekinema, 11/11/20... I'm done all my rounds of chemo, I've spent 3 to 4 weeks at a time in hospital stays... it was so difficult, I was very sensitive to every treatment... I haven't spoke to my friends about how it all felt or family, I would ring my closest people on my really bad down day's and just cry... because with covid 19 I couldn't have visitor's... and been in a room alone for weeks on end and not aloud out, it was mentally tourting... I'm still struggling with everything mentally, because I feel like my support group dont understand what I'm feeling or going through, so what's the point in talking, and then I feel like I'm repeating... I'm so angry, upset lost and do feel alone... I got discharged from hospital June 18th this year, and every 3 mths I go for a bone marrow biopsy and bloods... I'm in hope for my future, but I'm scared every single day... and it starts to feel like an obsession thinking about this luekinema all the time... I hope I can start to love life again...
Wow thanks so much for sharing! I’m really glad to hear that felt you could relate. That was one of the main reasons why I make these videos as sometimes we are the only ones able to understand. I hope you’re feeling better today and that every day after gets a little bit better 🙂 that’s how I see it, a little bit everyday feels great!
@@TylerBlah next week on the 11th it would be a year since I was diagnosed... I've become a little happier because all seems okay, I'm out walking with my headphones again... I still wish I could sit with someone who would understand my feelings.. I'd love to be able to have someone in my life who can relate and understand me... still feel alone but dealing with it better... I hope you are keeping good yourself...
Hey mate, glad to see you are holding up well in this hard time for you.. Nice video, which undoubtedly many people will find helpful. Really wish you the best and quickest recovery and please let me know if I can help in any way.
A bit delayed but I started to watch your vids. Wanted earlier, but it was just too real as I went through the same. AML too. Now I’m doing better, so it feels “safer”. Probably was afraid to see if my story goes down on a different path and I wanted to focus on my battles. I’m happy you doin’ better and will watch all your vids, kinda waiting for the transplant part, that was the toughest for me. Stay safe!
I understand entirely the difficulty of watching this content when going through it yourself. I found similar struggles so I understand completely. Focusing on your own journey is the most important thing during this. How are you going now ? which stage are you up to ? Always feel free to pop by and chat :D
@@TylerBlah thanks, I’m doing better and better, had my transplant on 4th of June. Having blood test every second week, but didn’t need any IV products for about 3months, however my platelets are still pretty low. Been around 10 for a while, on the last test it was 22, hopefully it’ll keep going. I’m on 150mg Eltrombopag/day, so max dose, good to see it has some effect now. Haemoglobin is 110 now, so not worried about that :) Still feel weak and my stamina is really far from the “original”, kinda miss work, but to feel less useless I started to study again and doing some exercise. Typically the part of healing when it slows down and can’t see that much improvement, but if I just think about where I’ve been couple months ago, I clearly see it’s much better now. You know…Slow and steady wins the race
....my mother was diagnosed 4 days ago. 2 days before that she collapsed.... if I wasn’t there at the time she would not be here anymore. When the doctor came in the room and said she had cancer all I remember is my head ringing loudly. It’s so difficult to be strong. When she went to the hospital she had less then four ounces of blood in her body........ idk what to do how to act, even though I am acting normal around her.... my entire being is shredded. What the actual fuck do I do......
Thanks Tyler. Really great help in dealing with a cancer diagnosis. Don't know what were the things you ate to help offset the aluminum after taste in the mouth? I may not be familiar with them as I live in the US
Hi Victoria :) I had lost just over 2kgs in a week unexpectedly. And it was more unusual to me than normal fluctuations, because I had been on a fixed calorie and exercise regime for about 2 months so I had been quite steady in my weight. I messaged a Doctor I knew which suggested some blood tests over a week. During the blood works I then got a cough which was a bit suspicious a few days later, but I then responded very quickly to antibiotics. But it was that initial loss in weight, which made me enquire ! I am lucky I was monitoring my weight at that point in time so specifically!
May I ask what symptoms made you get checked out in the first place? I have some symptoms and have been referred to a haematologist and have been very sick lately and am thinking seriously about why it could be.
Hi Hannah! I have pinned my initial symptoms at the top of the comments as I forgot to mention them in the video. I hope they help. And I hope you had some resolution with your haematologist RE the symptoms :)
Hey mshell4444. Great question and a common one because of my error in filming this video. I have a comment at the top of the comments section explaining it
Hi Daniel Junio. It depends on which country you are in. I think it's best to find out the level of care that you're visa can grant you and then see what additional support is available from there! All the best and I hope you are going okay!
Hi Paul, thanks I am enjoying the shaved head! :) Yes I did get a transplant, just past day 100 now. I have a posted a video just recently showing how I've handled recovery etc. on my channel! Good luck with your transplant, I hope it goes really well ! :D
Tyler Blah Yes, thank you. I had AML M6, also known as acute erythroid leukemia a while back, all good now. I find it so good to hear about others experiences and stories. So thank you for sharing!
Can I ask what made you get blood work in the first place? Were you having any symptoms? I’ve been going through this stressful process since August, where my blood work showed slightly elevated white blood cells. Infection and any other problem has been ruled out with a CT scan and X-ray so I’m finding out this week if it could possibly be leukemia.
Hey. Of course. The more questions the better as it can help others too! I had lost just over 2kgs in a week unexpectedly. And it was more unusual to me than normal fluctuations, because I had been on a fixed calorie and exercise regime for about 2 months so I had been quite steady in my weight. I messaged a Doctor I knew which suggested some blood tests over a week. During the blood works I then got a cough which was a bit suspicious a few days later, but I then responded very quickly to antibiotics. But it was that initial loss in weight.
@@TylerBlah Thank you for getting back to me so soon! I guess the uncertainty has been going on for so long because I don't have the usual symptoms and everything is normal except my WBC count. At least it has given me a lot of time to come to terms with the possibility, but it's still scary. On the up side I guess it will be early detection which is good. I think my doctors are being extra careful :)
Hi Aditya, the initial tests are Peripheral blood smears. Then we did bone marriow biopsy with different molecular studies on those samples to get specific subtyping.
@@TylerBlah ty bro.i thought the same.i recently did complete blood count and peripheral blood smear test.all came normal..just my hematocrit and rbc is a bit high due to low vitamins.getting shots for that
Hey..plz help me out..in lukemia.. after bone marrow transplant..can we say patient is fully normal.. my sister recently diagnosed with this..I don't wanna lose her..
Hi. A bone marrow transplant is normally one of the therapies they choose for certain types of leukaemia, and is an effective therapy to treat the leukaemia. However, the success of therapy is always dependent on the type of leukaemia that you have. Ie the sub-type, for example mine is inversion 16 cbf, and that guides my therapy and determines my risk. If you speak with your sisters doctor's they should be able to help you understand your sisters type of leukaemia and can explain the best therapy and whether she will benefit from a transplant, as not all patients with leukaemia require one. All my strength to you and your sister during this journey.