@@TheRealO.GKoOmz my wife just finished 2nd part of chemo. Still 2 parts to go. After the first part there was 0% bad cells, so far results are good. When your sister finished chemo?
Thank you for sharing your story. My husband has been diagnosed with aml. Just finished induction chemo and 29 day hospital stay. Next step is eventual bone marrow transplant. He doesn’t watch your videos but I do and have found them very comforting
My husband has been having a really hard time with the mental side of all the treatment. He was feeling as if he was losing his mind. I’m happy I saw your video because I was able to show him that it happens and you will be back to your old self like this guy. Thank you for this video and sharing the parts that most don’t talk about.
Thank you for describing your experience...as awful as your journey was, I believe that it is more common than rare for patients to have a similar experience. It has helped me appreciate my daughter's experience with her BMT and the side effects following intense chemo. She is out about 7 days now from transplant, and is struggling with many of the 7 side effects you described. Don't know about the psychosis, but would not doubt that it would be in her profile. Your video is comforting to me and gives me permission to trust in the passage of time, and the expertise of her team.
7 hours ago I dropped off my mom to receive AML treatment/Chemo at UCLA. I was her care taker x 2 weeks from the moment she got diagnosed, until she got admitted and will be after she gets released. Thank you for sharing this video. This will help me prepare for what’s to come.
Hi Tency! All my strength to you in this time. Feel free to pop by with any questions as we have a great community that interacts. And I hope the videos help!
I have sickle cell disease and will be getting a bone marrow transplant this July. I have come to this decision because I lack quality of life as I spend weeks in the hospital from extreme bone pain and the frequency is now at every 2 months. I am motivated and have a good outlook in regards to doing the bone marrow transplant. Of course I’m a little scared but I feel that I have already experienced most of the common side effects. The moment where you discuss the triggers you now deal with,losing time while in the hospital, the waking in screaming pain only to fall asleep once the pain meds start working and the guilt/embarrassment from treating the people around not well during a period when you weren’t quite yourself is hard and I have lived it. There are moments when I’ll be reminded that I behaved a certain way and am utterly mortified. I have lost friends during these moments because they didn’t understand what my situation was. It’s unfortunate that 28 years of hospitalizations have given me PTSD, just the smell of the hospital or sounds of machines affect me. I am looking forward to doing this transplant and taking it on as a challenge just because I don’t want to live the rest of my life in and out of hospitals. That’s no life.
Thanks so much for sharing your cancer episode with us! I went through breast cancer, and almost 3 years later am still affected by a kind of PTSD when going to doctor appointments. The horrors of the cancer episode do fade with time. And I call it an episode, because that’s all the power it will ever hold for me. (Easier to say now😁) Thanks for sharing a part of your life with us.
@@TylerBlah When you were verbally abusing staff, it was not you, it was the illness. One cancer sufferer wrote that cancer had made her a "horrible person".lf you apologise to staff, they will understand!!! Please reply to me.
Thanks for sharing. I am undergoing chemotherapy for AML for thelastoneyear. I experienced all of these symptoms in the initial months. Now there is a relapse and additional medicine will be tried next week.
Hay mate unfortunately I’m going through the same things as you I’m 32 2 months ago I was diagnosed with aml I also go to Gold Coast hospital I’m on my 2 round of consolidation iv watched all your videos and I’m on the same chemo and everything thanks for putting your video up it helps me to watch them Hope everything is going well with your transplant
Hey Damian! Thabks for sharing your story so far! Gols Coast was great. It's my favourite hospital food so far ! :D I am back in Sydney for treatment now, but have many friends still at Gold Coast hospital.How is treatment going for you now ?
Tyler Blah Yer going ok I got pneumonia and been Told to stay at home for a extra week before my 3rd round of consolidation extra time with my kids so 😊happy about that I’m heading back Sunday night for bone marrow biopsy Monday and chemo I was told after induction I had .4% blast or something left in my Bone marrow hopefully this is 00 now it take a long time for the Molecular test to come Back how did you go with transplant? You haven’t made any videos for a long time was worried things are not going well hope your going good this is a horrible thing to have I was healthy as running my own business and it got me out of nowhere I have 4 kids so I hope I get out the other side and can get a long time in remission
Tyler Blah I have inversion 16 what’s your thoughts on relapse mate how long did you get before relapse and do you have the same type of aml after relapse like had it changed mutated or anything
@@temovantongeren7639 Yeah so just waiting on the transplant now :) Our rounds of chemotherapy were aimed at not doing a transplant and for 5 months it was fine. But then was a slow molecular growth so we decided to escalate and go straight to the transplant this year! I will have some more videos soon I hope about. But we are always being guided by the molecular studies. I remember at GCUH they would come back quite slowly too! But they do arrive and usually with good news ! Pneumonia would have been difficult ! Really difficult and sorry to hear you had that!
Tyler Blah pneumonia is a pain iv had it 2 times now I have inversion 16 m4eo my my Hematology team are hopeful I’ll be cured with just this chemo too so no bone marrow transplant for me as of yet but I was wondering did you have any mrd left after induction my blast was .4% I’m still waiting for results from after my first induction and so on but there not back yet I’m Hoping my levels is now 0 do you know what yours was after induction and consolidation
I have Mylofibrosis and whilst there is a difference I'm fairly certain the Allogenic Stem Cell Transplant process is the same. These vids are helping me prepare for the unknown and what I face in just 12 weeks.
Well you're even more incredible than I thought.. Those were some heavy side efects, damn.. I cant believe how well you're able to handle stuff like this, I mean analytically.. You're truly wise beyond your years! I recognize the metallic taste, I had some of that during my rounds of Metronidazol, but of course probably very much less extreme than what you experienced. However, I get your point, that sort of stuff is truly very disheartening. During my time in hospital some nasty shit happened to me and also other people around me.. so it is indeed traumatizing. I had what was then thought to be Crohn's, but what maybe was a lupus related ileitis.. Because of the misdiagnosis etc. it was just a mess and I was happy to get out alive. Still obviously very much less severe stuff than yours. Truly respect to you sir and enjoy this beautiful new study year 😘 😍💕 We're here rooting for you!! Thank you also for sharing your coping tips, they will surely be useful to others going through similar stuff 👍
Hi, Tyler! Thank you for these awesome videos about AML. I'm an author and currently researching about AML for my third book. Your videos are such a big help, so thank you :)
@@TylerBlah it's political romance, one of the character was diagnosed with AML as a teen and had a relapse in adulthood. I watched a lot of your vids to gain perspective, so I want to ask whether you mind if I credit your name in my book? Once the book is in print, I could take a photo and send it your way! :) Unfortunately, my publisher only publishes domestically (I'm Indonesian). Otherwise I'd love to send the final result to you haha. Anyway, I hope you're doing well with the current situation :)
My husband is going through colitis and lots of infections for the past week. Whenever we feel he's getting better, fever and pain just come back again. I wish I could take all his pain to myself... how long did this go on for you? And how did you start feeling better? Thanks for these videos, these are a comfort in such a terribly painful time
Thanks for sharing.. breast cancer chemo makes a lot of people gain weight, the anti nausea meds and steroids were amazing at controlling that ill feeling though..❤
Hey Lucas. I am going really well now. All my strength to your wife and yourself during this. I have made a lot of videos with tips and advice that I hope help you to understand the next steps during treatment
What was the brand name of the lip balm, I couldn’t see it properly, I had mucusitis and months later my lips are constantly still dry no matter what I try.
Glad I found this vlog my sister has recently been diagnosed with AML and your vlog has been very informative and real.
Thank you
Which stage needed chemotherepy in aml my father diagonised with aml plzz tell me
How is your sister now Iman?
@@L-81 My sister is doing much better and is now in remission living her best life which is great for her and our wider family…
@@TheRealO.GKoOmz my wife just finished 2nd part of chemo. Still 2 parts to go. After the first part there was 0% bad cells, so far results are good. When your sister finished chemo?
Thank you for sharing your story. My husband has been diagnosed with aml. Just finished induction chemo and 29 day hospital stay. Next step is eventual bone marrow transplant. He doesn’t watch your videos but I do and have found them very comforting
My husband has been having a really hard time with the mental side of all the treatment. He was feeling as if he was losing his mind. I’m happy I saw your video because I was able to show him that it happens and you will be back to your old self like this guy. Thank you for this video and sharing the parts that most don’t talk about.
Thanks for writing this Kimberley. It means a lot ! Glad to hear your partner found it useful. How are they going now ?
(exercisrs
Hi Tyler, this is fantastic that you can pass on such information. Keep well Mate!
Thanks so much David. I'm glad you enjoyed it :)
@@TylerBlah I am directing my students to watch it to get a good patient position
Thank you for describing your experience...as awful as your journey was, I believe that it is more common than rare for patients to have a similar experience. It has helped me appreciate my daughter's experience with her BMT and the side effects following intense chemo. She is out about 7 days now from transplant, and is struggling with many of the 7 side effects you described. Don't know about the psychosis, but would not doubt that it would be in her profile. Your video is comforting to me and gives me permission to trust in the passage of time, and the expertise of her team.
7 hours ago I dropped off my mom to receive AML treatment/Chemo at UCLA.
I was her care taker x 2 weeks from the moment she got diagnosed, until she got admitted and will be after she gets released. Thank you for sharing this video. This will help me prepare for what’s to come.
Hi Tency! All my strength to you in this time. Feel free to pop by with any questions as we have a great community that interacts. And I hope the videos help!
I have sickle cell disease and will be getting a bone marrow transplant this July. I have come to this decision because I lack quality of life as I spend weeks in the hospital from extreme bone pain and the frequency is now at every 2 months.
I am motivated and have a good outlook in regards to doing the bone marrow transplant. Of course I’m a little scared but I feel that I have already experienced most of the common side effects.
The moment where you discuss the triggers you now deal with,losing time while in the hospital, the waking in screaming pain only to fall asleep once the pain meds start working and the guilt/embarrassment from treating the people around not well during a period when you weren’t quite yourself is hard and I have lived it. There are moments when I’ll be reminded that I behaved a certain way and am utterly mortified. I have lost friends during these moments because they didn’t understand what my situation was. It’s unfortunate that 28 years of hospitalizations have given me PTSD, just the smell of the hospital or sounds of machines affect me.
I am looking forward to doing this transplant and taking it on as a challenge just because I don’t want to live the rest of my life in and out of hospitals. That’s no life.
Thanks so much for sharing your cancer episode with us! I went through breast cancer, and almost 3 years later am still affected by a kind of PTSD when going to doctor appointments. The horrors of the cancer episode do fade with time. And I call it an episode, because that’s all the power it will ever hold for me. (Easier to say now😁) Thanks for sharing a part of your life with us.
Wow thanks for sharing Lara! and that is so right. I am glad to hear its behind you now
@@TylerBlah When you were verbally abusing staff, it was not you, it was the illness. One cancer sufferer wrote that cancer had made her a "horrible person".lf you apologise to staff, they will understand!!! Please reply to me.
Thank you for making this video. My husband is going threw this now.
Thanks for sharing your experiences. I hope you are healthy and happy 😊
Thanks for sharing. I am undergoing chemotherapy for AML for thelastoneyear. I experienced all of these symptoms in the initial months. Now there is a relapse and additional medicine will be tried next week.
Hay mate unfortunately I’m going through the same things as you I’m 32 2 months ago I was diagnosed with aml I also go to Gold Coast hospital I’m on my 2 round of consolidation iv watched all your videos and I’m on the same chemo and everything thanks for putting your video up it helps me to watch them Hope everything is going well with your transplant
Hey Damian! Thabks for sharing your story so far! Gols Coast was great. It's my favourite hospital food so far ! :D I am back in Sydney for treatment now, but have many friends still at Gold Coast hospital.How is treatment going for you now ?
Tyler Blah
Yer going ok I got pneumonia and been
Told to stay at home for a extra week before my 3rd round of consolidation extra time with my kids so 😊happy about that I’m heading back Sunday night for bone marrow biopsy Monday and chemo I was told after induction I had .4% blast or something left in my
Bone marrow hopefully this is 00 now it take a long time for the Molecular test to come
Back how did you go with transplant? You haven’t made any videos for a long time was worried things are not going well hope your going good this is a horrible thing to have I was healthy as running my own business and it got me out of nowhere I have 4 kids so I hope I get out the other side and can get a long time in remission
Tyler Blah
I have inversion 16 what’s your thoughts on relapse mate how long did you get before relapse and do you have the same type of aml after relapse like had it changed mutated or anything
@@temovantongeren7639 Yeah so just waiting on the transplant now :) Our rounds of chemotherapy were aimed at not doing a transplant and for 5 months it was fine. But then was a slow molecular growth so we decided to escalate and go straight to the transplant this year! I will have some more videos soon I hope about. But we are always being guided by the molecular studies. I remember at GCUH they would come back quite slowly too! But they do arrive and usually with good news !
Pneumonia would have been difficult ! Really difficult and sorry to hear you had that!
Tyler Blah pneumonia is a pain iv had it 2 times now I have inversion 16 m4eo my my Hematology team are hopeful I’ll be cured with just this chemo too so no bone marrow transplant for me as of yet but I was wondering did you have any mrd left after induction my blast was .4% I’m still waiting for results from after my first induction and so on but there not back yet I’m
Hoping my levels is now 0 do you know what yours was after induction and consolidation
I have Mylofibrosis and whilst there is a difference I'm fairly certain the Allogenic Stem Cell Transplant process is the same. These vids are helping me prepare for the unknown and what I face in just 12 weeks.
Well you're even more incredible than I thought.. Those were some heavy side efects, damn.. I cant believe how well you're able to handle stuff like this, I mean analytically.. You're truly wise beyond your years! I recognize the metallic taste, I had some of that during my rounds of Metronidazol, but of course probably very much less extreme than what you experienced. However, I get your point, that sort of stuff is truly very disheartening. During my time in hospital some nasty shit happened to me and also other people around me.. so it is indeed traumatizing. I had what was then thought to be Crohn's, but what maybe was a lupus related ileitis.. Because of the misdiagnosis etc. it was just a mess and I was happy to get out alive. Still obviously very much less severe stuff than yours. Truly respect to you sir and enjoy this beautiful new study year 😘 😍💕 We're here rooting for you!! Thank you also for sharing your coping tips, they will surely be useful to others going through similar stuff 👍
Thanks so much anni. Yes that darn metallic taste. I'll never forget it, nor underestimate it!!!
Hi, Tyler! Thank you for these awesome videos about AML. I'm an author and currently researching about AML for my third book. Your videos are such a big help, so thank you :)
Wow best of luck with the book! I am glad I could help. Can I ask what is the topic of the book? 😊
@@TylerBlah it's political romance, one of the character was diagnosed with AML as a teen and had a relapse in adulthood. I watched a lot of your vids to gain perspective, so I want to ask whether you mind if I credit your name in my book? Once the book is in print, I could take a photo and send it your way! :) Unfortunately, my publisher only publishes domestically (I'm Indonesian). Otherwise I'd love to send the final result to you haha. Anyway, I hope you're doing well with the current situation :)
That sounds so interesting and cool! I'd be honoured if you wanted to credit, but don't feel obliged. Just glad I could help!
My husband is going through colitis and lots of infections for the past week. Whenever we feel he's getting better, fever and pain just come back again. I wish I could take all his pain to myself... how long did this go on for you? And how did you start feeling better? Thanks for these videos, these are a comfort in such a terribly painful time
I experienced chemo cloud on my 3rd session.. took me 3 days to remember the word noodles
You're back! Yay! :D
Yes!!!!
Good prebiotics, probiotics, and postbiotics, help the gut A LOT
Thanks for sharing.. breast cancer chemo makes a lot of people gain weight, the anti nausea meds and steroids were amazing at controlling that ill feeling though..❤
My dad is currently going through #7 on your list. Hoping what you say is true and he'll snap out of it.
Hope your dad is getting better every day now ! It’s definitely one of those things where we have to allow time to take care of some of these things
Hi Tyler please could you share what type of AML did you have, do you know ? I have recently been diagnosed with
❤️🙏 thank you for sharing
How are you now Tyler? My wife was diagnosed with AML 1 week ago and Im scared. She just started chemo.
Hey Lucas. I am going really well now. All my strength to your wife and yourself during this. I have made a lot of videos with tips and advice that I hope help you to understand the next steps during treatment
I hope it has a subtitle so that I can easily understand what he is saying.
So slung 🥺 -filipina here
What was the brand name of the lip balm, I couldn’t see it properly, I had mucusitis and months later my lips are constantly still dry no matter what I try.
Dermal Lip Balm. I hope it helps and you're recovering well 😊😊
Tyler Blah thank you! I’m doing a lot better with recovery in the last 2 months but still some symptoms. Hope you are doing well
AML m4 mutation. Does it need stem cell transplantation..?@tylar
Fantastic video Tyler 👍 2 pages of notes. SMc
Hi tyler blah .. AML m4 mutation. Does it need stem cell transplantation..?
There are a lot of different things that define if a transplant is needed. It is best to consult with your doctor on that :)
Where did u took treatment? What is the outcome
Gudetammmmaaaa
Yes!!! :)
Wbc 33800 hai aml ki kaunsi stage hogi
hey did you get the answer?
What cáncer did you have? Im going through breast cancer tx.in three days I will have breast surgery all has ben in and out
He has leukemia. Hope your okay now?
Can we are friend 's I'm from india
Your Facebook name
🤝🤝🤝🤝🤝
Wow! These sound horrible.
They were tough,but short lived thankfully! :)