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My Bone Marrow Transplant Journey
เข้าร่วมเมื่อ 31 ต.ค. 2020
Hi! I would like to share my experience receiving a Bone Marrow Transplant / Allogenic Stem Cell Transplant in hopes that it will help people prepare for one.
When I was preparing for mine, I found it hard finding real day-to-day vlogs that show everything. Please know that your experience will differ, and that I am not a medical professional.
I was Diagnosed with Chronic Myeloid Leukaemia in Sept 2011, I have been on imatinib, disatinib and nilotinib, none of which got me to remission.
I will try make videos about day-to-day struggle, what to pack, prep for BMT, IVF egg retrieval.
When I was preparing for mine, I found it hard finding real day-to-day vlogs that show everything. Please know that your experience will differ, and that I am not a medical professional.
I was Diagnosed with Chronic Myeloid Leukaemia in Sept 2011, I have been on imatinib, disatinib and nilotinib, none of which got me to remission.
I will try make videos about day-to-day struggle, what to pack, prep for BMT, IVF egg retrieval.
Bone Marrow Transplant Experience vlog : day +11 to day +29 (hospital day 17-26)
I am not a medical professional, I am sharing my personal experience.
This is the first day of going into hospital for my transplant.
Hospital Day 17 to 26 and 9 days at home: Transplant Day +11 to +29
Day 0 is the day that you get the stem cell transition.
Day -5 to -1 is preparation days with chemo and other medications.
Day +1 to +12 is approximately the time you have minimal blood cells until your new stem cells begin to make new blood cells.
I was in hospital total of 26 days. It was one of the most difficult months of my life, I hope these videos help anyone who is going to go through a transplant or have a loved one who will go through one.
I have been dealing with Chronic Myeloid Leukemia CML since 2011. Nothing has worked to get into remission, my cancer began to show signs of progressing to AML, so a bone marrow transplant was advised.
I was lucky enough to have time to prepare mentally and physically for the transplant.
Bone marrow transplant / Stem cell transplant story experience vlog Blood Cancer
Some of the Medications during the process: Fludarabine Chemo , Busulphan Chemo , imatinib , nilotinib , Allopurinol , Clonazepam , Ursodeoxycholic acid , Rabbit ATG Anti Thymocyte Globulin Genzyme , Methylpred , Phenergan , Cyclosporin , Vitamin K , Loratadine , Hydrocortisone , Fluconazole , Valaciclovir , Methotrexate Chemo , NG tube
This is the first day of going into hospital for my transplant.
Hospital Day 17 to 26 and 9 days at home: Transplant Day +11 to +29
Day 0 is the day that you get the stem cell transition.
Day -5 to -1 is preparation days with chemo and other medications.
Day +1 to +12 is approximately the time you have minimal blood cells until your new stem cells begin to make new blood cells.
I was in hospital total of 26 days. It was one of the most difficult months of my life, I hope these videos help anyone who is going to go through a transplant or have a loved one who will go through one.
I have been dealing with Chronic Myeloid Leukemia CML since 2011. Nothing has worked to get into remission, my cancer began to show signs of progressing to AML, so a bone marrow transplant was advised.
I was lucky enough to have time to prepare mentally and physically for the transplant.
Bone marrow transplant / Stem cell transplant story experience vlog Blood Cancer
Some of the Medications during the process: Fludarabine Chemo , Busulphan Chemo , imatinib , nilotinib , Allopurinol , Clonazepam , Ursodeoxycholic acid , Rabbit ATG Anti Thymocyte Globulin Genzyme , Methylpred , Phenergan , Cyclosporin , Vitamin K , Loratadine , Hydrocortisone , Fluconazole , Valaciclovir , Methotrexate Chemo , NG tube
มุมมอง: 2 842
วีดีโอ
Bone Marrow Transplant Experience vlog : day 0 to +10 (hospital day 6-16)
มุมมอง 7K2 ปีที่แล้ว
I am not a medical professional, I am sharing my personal experience. This is the first day of going into hospital for my transplant. Hospital Day 6 to 16: Transplant Day 0 to 10 Day 0 is the day that you get the stem cell transition. Day -5 to -1 is preparation days with chemo and other medications. Day 1 to 12 is approximately the time you have minimal blood cells until your new stem cells be...
Bone Marrow Transplant Experience vlog : day -4 to -1 (hospital day 2-5)
มุมมอง 1.2K2 ปีที่แล้ว
I am not a medical professional, I am sharing my personal experience. This is the first day of going into hospital for my transplant. Hospital Day 2 to t: Transplant Day -4 to -1 Day 0 is the day that you get the stem cell transition. Day -5 to -1 is preparation days with chemo and other medications. Day 1 to 12 is approximately the time you have minimal blood cells until your new stem cells be...
Bone Marrow Transplant Experience vlog : day -5 (hospital day 1)
มุมมอง 9862 ปีที่แล้ว
I am not a medical professional, I am sharing my personal experience. This is the first day of going into hospital for my transplant. Hospital Day 1 : Transplant Day -5 Day 0 is the day that you get the stem cell transition. Day -5 to -1 is preparation days with chemo and other medications. Day 1 to 12 is approximately the time you have minimal blood cells until your new stem cells begin to mak...
Are you doing better?
Have it in 12 hours and I'm freaking out.
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Go posason owl fahr kante pahblek mahron 🪓 me wife Joan cat bagladas sotahpor mahron asah hoday posason ahsraf ahbeb nadeah pole melon rme rab rme poles debe farsabes owl gorop cat joan maseg hoday posason baek wolpahpar foto Lok folo oief hoday pon mobael baek wolpahpar bnp jamat uomelek kola bedas owl monte posason owl kante posason monte joan log col me fasan hoday posason joj kot hoday somate bagladas go owl uoproson hoday ok bode
I am Non hodgkin lymphoma (PMCL) patient. I am going through ALLO Bone marrow transplant. Today, done with conditioning chemo & radiation. Tomorrow, transplant is there. Little bit scare
Not a fun experience. I’m about 1 year post mt SCT. I’m remission but having monthly chemo. Strange getting chemo after the cells went back in.
I am going to have one of those this year and it is the loss of my freedom to be outside that I fear the most but I don't think that I have much choice as I developed Mycosis Fungoides, pretty rare T Cell Lymphoma, and it has advanced to the aggressive stage and will probably die in a few years if it is not stopped.Nothing else has slowed it progressing through my body and they have tried loads of things.
Hey, I'm at day +68 post transplant (AML) May I know how you are doing now. How's your condition.
What about u? And how's your condition?
@@musfiqrahman-cm8pu I'm much better now. Day + 140. My cyclosporine (immunoglobulin) has stopped, so feeling much better but have to go through bone marrow test on day 150 and 180 to check my donors cell. And Thankyou for asking
Bless you child
I can understand your pain. God will bless you. Dont worry
Bless you and thanks for sharing
Thank you for your honest videos!!! We also have a family member (age 15) with CML getting ready for BMT. All that you described in your bio is what we have done or what we are going to be doing. If you don't mind me asking, how are you now? Any GVHD?
Hi, sorry for the late reply, hope the BMT has gone well for your family member. I have been aiming to do some update videos, I know it’s always reassuring to see the recovery process as well. I did have some bad gvhd, skin rashes and such, but steroid courses and staying on immunosuppressants helped me get through it. Now being 1075 days post-bmt, I only sometimes get slightly dry eyes, and am only on hormones-replacement therapy medication.
How are you doing
Hi, I am doing really well, over 1000 days now. I will try organise an informational update video soon :)
I'm suffering with myelofibrosis and my Dr told me that transplant will have only 20% success rate I am from India
@@Sanju40-Qmy father from India will undergo BMT next month
How are you doing?
@@naginaiqbal5036how is he?
Hi there, how are you now? Just want to say your video has been remarkably inspiring to me!! And I hope you are recovering well : ) May I ask where is the hospital you had your transplant done? Is that in the UK?
Hello, how are you doing now?! Could I have your instagram or snapchat account
How are you now
How are you now? I have CML and may get a transplant. What type of disease did you have?
Hey, I’m doing good. Day +718 now. I also had CML, diagnosed when I was 17. How are you? Did they say you have to have a transplant? Have the TKI’s not put you into remission? If you do have to have a transplant, it would be tough, but so good knowing you’re finally in remission. Good luck
@@bonemarrowtransplantjourney I have been on TKI's since 2015 and havent been in remission, however my numbers are very low. My Dr. has brought up a BMT since I am on my 4th TKI do to some bad side effects. I am currently on asciminib. Do you feel normal now that youve been +700 days post BMT??
Oh my god when I heard cyclosporine!! Nightmare Made me high blood pressure to my head went to coma And epilepsy … Transplant are not easy guys I wish all peoples will be ok ✅
I have been taking cyclosporine, my BP stays very high. Also different things going on my body specially related to my stomach
R u under bmt treatment? @@Ajaykumarchoreo
I will receive a bone marrow transplant next month and this really helped me prepare myself, thank you so much for sharing your experience!❤️Hope you are doing well. Lots of love from Germany xx
I am so glad that this helped! Best of luck with your Transplant, I am happy for you that you are in Germany, you will be following a great transplant protocol (different countries have slightly different transplant processes, and I heard the Germany one is really good) I will try add more videos soon about what to pack and what to expect afterwards. I am now day +510 :) getting my baby vaccinations now!
Congratulations!! 🎉Getting your vaccines is a huge milestone💪🏼 I am definitely very grateful to receive my transplant here. At least one thing to be happy about in this really not great situation😬 Looking forward to more videos from you 😊