My Bone Marrow Transplant Experience | What It's Like | Aplastic Anemia | Chemotherapy | Bone Marrow
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- čas přidán 9. 05. 2023
- Hey everyone! Thanks for clicking on my video. My name is Mark and my channel revolves around educating the public about the extremely rare disease of aplastic anemia. Join along as I share stories of my bout with the disease and teach others how they can help. Don’t forget to like and subscribe!
aplasticanemiamedia@gmail.com
Resources for those diagnosed with aplastic anemia:
1. The private Facebook group - Aplastic Anemia: Your Fight is My Fight.
*Please note this is a private group, and only those diagnosed with the disease or family members of those diagnosed may join. Thank you.
* / yourf. .
2. The AA/MDS International Foudation.
www.aamds.org/
3. National Organization for Rare Diseases (NORD). rarediseases.org/
Resources for those looking to help:
1. Sign up for the bone marrow registry - bethematch.org/support-the-ca...
2. Donate blood - www.hhs.gov/oidp/topics/blood...
3. Donate money - bethematch.org/support-the-ca...
Thanks for sharing your story! I had a bone marrow transplant on 3/15/2021. I had Myleodysplashia, which is rare blood cancer. I am doing good.
I am cancer free now. Take one day at a time!
So this is recoverable. I was just diagnosed and I’m scared to death
Taylor, my apologies for missing your comment. It is 100% recoverable. How are you doing now?
My hubby also had a stemcell transplant 8 years ago. And he is doing so good.
That is so great to hear!
It seems like people who have this procedure done do really well. Strong individuals like us 💪 ✨️
CONGRATULATIONS!! GOOD HEALTH, LONG LIFE AND MUCH HAPPINESS!!!
Lost an infant cousin to this in 1971. Today everyone doesn’t have to die, and someday nobody will!
Thank you, I am very grateful for the medicine today. I'm sorry to hear about your cousin. May they rest in peace.
Such a well-done video with good explanations! You ROCK Mark!! Will continue praying for you 🙏!
Thank you for recording your story! Awesome!!!
I clicked on thus and started watching and was thinking … you look so familiar then realized I know your mom and dad (you look like your dad!). My prayer group and I have been praying ever since you became ill. I remember you mom telling me you couldn’t have ice out of fast food places. That stuck with me and reminded me to add extra prayers whenever I was near an ice machine. Now I get the story behind the person I have been praying about for so long. God is so good! Suzanne Cabrera
Thank you so much for your prayers. A lot of people I know have stopped having ice in their drinks for that very reason! Sending my best your way. Thank you for your kindness.
I’m so glad to have had the opportunity to watch your journey. I teared up because I’ve taken every single step you did as well and the feelings you had are so relatable. I forget how grateful and happy I was. It’s a fight that you never give up on.
Thank you for sharing your brave story . I can imagine how much you & family might have gone through emotionally. I have been diagnosed with aplastic anaemia last week. Will watch your vedios for hope & strength 🙏🏼
Me and my dad watched your video today during a transfusion. We met at Moffit so it was great to see u ring that bell. My dad can consider all aspects of what a bone marrow transfusion would be like. Thanks so much for your willingness to share your experience.
WOW… that was fantastic words cannot explain the joy that a person has for you and your family. Thanks to everybody at the hospital. It’s amazing what they can do….. my head is off to the gym. Doctors and nurses excellent video..
Thanks for the information! This is helping a lot to understand a lot better the process from a first hand experience patient. I really hope your recovery is prompt and wish you the best.
Thank you to you and your beautiful wife for this video. My husband will be admitted to UAB on July 13, 2023 for his BMT. Your video is very uplifting.
Thank you for sharing. I will be praying for him. Please keep me updated on his progress. Your husband is a warrior!
Hey man good to see you!! Hopefully I will be admitted on this Tuesday coming up. I'm following you so I have a better understanding of what's involved. Nice to have your family sending you videos etc. Keep up the fight. Happy you could finally ring the bell.
Big day coming up for you, Eric! You are going to crush this thing. I am here if you need anything, do not hesitate to reach out.
I was crying of happiness, God bless you always.
Aww I'm so happy for you Mark! You are a superhero 🤗❤
Cant wait to see more updates from you. Hope you are doing well. Thank you for sharing your story. 💪💪
FYI - I use my maiden name on this channel but everyone knows me by Cabrera. I will continue to pray for you and all the family. So strong … so beautiful!
Thanking of you my friend. Thank you for the outstanding example you set of courage and self discipline.
And all of this with a smile on your face. You only deserve the best of outcomes.
Thank you for sharing your journey!!!
So grateful for you and your family for making this. Besides it being a beautiful testament to family and to the effective work of a medical team…I’m brand new to my hospital’s BMT unit and this has given me a muuuuch better understanding about the treatment process and what my patients are experiencing. I feel much more prepared to help my patients through their transplants. Thank you. And I hope you are doing well!
Thank you for taking care of us! I'm glad the video gave some insight on what it's like for people going through BMT. It's not easy, but it is possible with great nurses, doctors, and other staff!
My son will be doing this same thing in the coming weeks. Thatnks so much for being so informative. Its helped us wrap our minds around the whole thing and makes it a little easier to understand. So happy it worked for you. Hopefully we have the same good fortune.
Your son is going to crush it. Please let me know if you have any questions or anything!
Just found your channel. Sending love and healing thoughts! ❤
Blessings and healing for you
Thank you for sharing you are so brave and God will continue to heal you ❤❤
My mom had car-t on 4west at Moffitt two years ago. Those drs and nurses are the best. Watching your video brought back a lot of good memories. She’s pre-MDS from prior therapies so might be checking back in for an allo sooner than later. Thanks for sharing your experience.
Moffitt is the best. Your mom is in great hands there in the BMT department. Please keep me updated on her progress.
Hi I’m so glad you are well - I’ve been diagnosed the day when you post your last video. Haven’t seen you posed for a month made me start to wonder how’s everything going with you. I’m so happy that you are strong and positive with family surrounded, and most importly, still have your hairs 😂 Please stay safe and healthy, I made a wish that I (and everyone else who’s having aa) will find a perfect donor and will be as lucky and strong as you. Recover well!🎉
Thank you so much for the kind words.
I am sorry to hear about your diagnosis. You can get through it! It's not going to be easy, but you have a lot of things on your side. Please keep me updated on your progress. My email is aplasticanemiamedia@gmail.com
Hi Mark, yes, yes, yes ❤... Thank you for sharing your jjourney. I have not gotten an actual date for my transplant due to a surgery I am going to have. This surely makes things easier.. Much success to you and may you continue to excel.
Many apologies for the delayed response. Have you gotten a date scheduled yet? It will go by fast and you will be on the other side soon enough!
Thank you so much for sharing. This is really much appreciated help us understand what to expect and prepare ... we are praying for all....
Sending many prayers your way. You guys got this
I am watching this on june 1 2023 i hope and pray you are feeling great and moving on with your life god bless
Hi Mark! I just stumbled across your videos. I also have Aplastic Anemia and got ATG about a year ago. So far my counts are high enough for me to continue my life for now. I have worried about relapsing. I’m in college right now and hoping that both my husband and I can make it through school before I would need a transplant. Your videos have eased some of my anxieties about the possibility of a transplant someday. Thank you!
Thank you for sharing your story. I'm sorry you've been diagnosed with this dreaded disease. The transplant wasn't exactly a fun experience, but I am glad I did it. Whatever happens, please keep me updated!
LETS GO BABY!!
Congratulation my brother have cancer and we in turkey for treating and am happy am his march and I have donated seeing your recovery I have hope him thanks for sharing
How is your brother doing? How are you doing?
Thanks for sharing your story. I hope that you are doing well. I found it very interesting, because I I'm also a survivor of aplastic anemia, now 20 years post transplant. Just want to give everybody hope out there, I've led a normal and happy life. Thank you Jesus 🙏 and my doctor and nurses❤
I dont know if you'll see this but I see that you believe in our Lord and Savior Jesus. I was diagnosed 2 years ago, and I've been doing great. I got the ATG (horse)
I had a meeting with my doctor and he said I had a match. It's up to me. I'm trying to decide if this is whatbthe Lord would have me do. Can you tell me of your journey and how the Lord has guided and helped you through it?
Thank you for sharing and I too had my bone marrow transplant for AML @ Moffitt. I'm coming up on a year and my new birthday is December 28th!! I did receive my bone marrow from an anonymous donor and I look forward to the day that thank him for this life saving gift. I will have my one year bone marrow biopsy in a few weeks and I hope for "no blasts"!! My new mission is to promote the need for bone marrow donors. I hope you are doing well and getting stronger every day.
That is so great, and happy re-birthday! The transplant process is scary, so if you are able to share your story and encourage others to sign up, that is incredibly noble. I am so happy to hear you are doing well!
Mark thanks for the video I was just diagnosed with mds bone marrow transplant in 3 months
You will do great! Please keep me updated on your progress.
Hi man my name is gaz and I have a rare blood cancer named mylofibroasis .. I get admitted in 2 days .. Glasgow’s Scotland .. I need a bone marrow transplant and chemotherapy and blood transfusions.. pretty scared .. I have 3 kids that need me and I them .. well done for posting and keeping safe and well congratulations
You are going to crush it, Gaz. Please keep me updated on your progress. Good luck!
Congratulations on your procedure. I had something very similar a half a year ago, a Stem Cell Transplant for leukemia, AML. I think I had a rougher time as my chemo caused me to have incontinence, bowel and bladder, for the entire time and that caused a great deal of pain and difficulty. Though what was most surprising in your video is that your Hemoglobin stayed so high, while I had to get almost daily transfusions to keep mine above 7, and that your medical team saw no reason to elevate your platelets when they hovered around 10, as my team would give me platelet transfusions every time I fell below 20, which was often. Also, my white cell count went to 0.0 and stayed there for two weeks after the transplant, afterwards slowly rising to about 1.0 at three weeks. Back to the similarities, I was allowed to go home on day 20 after the transplant and in my hospital they also had departing patients ring the bell, with all the medical staff present cheering. That was nice.
I did receive a few blood and platelet transfusions, but not many. It's wonderful to hear you are doing well. AML is a whole different beast, and I pray the disease is no longer negatively affecting your life.
@@aplasticanemiamedia1 Thanks for the kind wishes. I guess I was mistaken about your transfusions because I didn't notice any jumps in platelets and hemoglobin from day to day in your chart. Maybe I missed them or incorrectly read your chart. Anyway, my bone marrow biopsies have been clear since the transplant, and I'm scheduled to have one last big biopsy in August. If that's clear, I will be declared to be in complete remission and possibly even cured.
Good luck to the both of us!
@@jmnightingale9055 , bone marrow taken from ur siblings or where, my brother suffering from aplastic anemia, no HLA matches from siblings, how to find unrelated stem cells
I’m going to be getting my bone marrow transplant at Moffitt soon and I was wondering what the rooms would be like!!! Thx for posting!!
Sorry for the delayed response. How are you doing?
I was in hospital three weeks ago for three days, had bad gastro and a really bad cold all at the same time
God bless you dear.
Thanks for sharing
Thank you for posting and sharing your video. My dad 70 yrs old was diagnosed with multiple myeloma in Dec 2023. He is going to have auto stem cell transplant in mid July. I am very nervous and worried about the uncomfortable and side effects he will have after the transplant.
I'm sorry to hear about his diagnosis. The fact his doctors are going to transplant at his age shows they have a lot of confidence. It's not a fun journey, but it's one that can save his life. Please keep me updated on his progress!
hey thats so amazing your so strong for completing this!! my dad is going in at the end of the month and im feeling really nervous for him, so i searched to see what the process is going to be like, but its going to be tough seeing my "strong dad who can beat everything" and the person i always go to being so vaunrable. Im going to try see him 5-6 times a week but I need your opinion/thoughts. is that too much? even though I have high school and sports im going to make him a priority but i dont want him feeling he has to be strong or happy for me when im there but i want him to know were by his side 24/7 and it kills me thinking about him being alone in the room (even at night). i want to make him a little goodie basket to take in with him, what are things you wish you had/were really helpfull? blankets, or home baking? im really nervous for him so if anyone can please keep him and all those going through this procedure in your thoughts and prayers.
Sending many prayers for your father's upcoming transplant. To answer some of your questions:
In regards to visits, it all depends on what he wants. I had visitors every day and it was great because it can be isolating in the room.
Also, home-cooked meals are HUGELY important. If I only had hospital food, I would have gone nuts.
We brought a twin-sized mattress topper and our own pillows and blankets. Those items I cannot recommend enough, especially the mattress topper.
I plan to make another video soon about what I brought and what I'd recommend.
If you have more questions, feel free to reach me at aplasticanemiamedia@gmail.com
@@aplasticanemiamedia1 thanks!!
Thanks for sharing your story Mark, I have some questions:
How long did it take for you to find a donor? I have aplastic anemia too and I'm at the stage where I'm seeing if my sibling is HLA compatible or not. Also, after you found the donor, how long was it until you started treatment? Did the treatment put your life on pause for a while? My doctor said the whole bone marrow transplant process + recovery would take like 6 months, and I'm 20 right now and in college so I'll have to take a break from it to deal with this, but at least I'll be cured after.
Hey Matt, thank you for reaching out. First off, I’m sorry to hear of your diagnosis. AA is an unforgiving disease, but is is manageable. I hope your sibling is a match because those BMTs tend to be very successful. Unrelated BMTs are pretty successful, too…heck, look at me.
My story is a bit murky as I was diagnosed in December 2018, got ATG in January 2019, relapsed August 2021, and finally received the transplant in January 2023. I’d recommend watching my video “my aplastic anemia story” for more details about my diagnosis.
Yes, your life will be put on pause for a while. You’ll be stuck in purgatory many times, too. But it’s important you remain patient and trust the process.
Email me at aplasticanemiamedia@gmail.com and I’d be happy to answer as many questions as you’d like. Take care.
God Bless You 🙏🙏🙏
It’s amazing to see how different the transplant process is for me in Australia compared to the US. AGT was done years ago - not right before the transplant. I thought they were two different treatments?
They gave me a lollipop to suck on while the stem cells were going in. Had a funky taste and smell.
I received the horse ATG treatment a few years ago (I have another video on that) but unfortunately relapsed in Aug 2021. Part of the transplant regiment included receiving rabbit ATG to help the transplant "stick," as they called it.
So yes, you are right, they are two different treatments, but ATG has multiple applications!
I'm in Canada and also had the horse ATG a couple of years ago. Apparently the rabbit ATG is also part of my pre transplant regime.
I'm doing a bone marrow transplant with my own cells and I'm on day +7 an feel soooooo horrible with mouth sorces an nausea to the max
That diluted is sooooo good
Thank you for sharing your journey. Do you mind sharing what your response was from the initial induction therapy was? Going forward with the transplant is such a big decision and I am struggling with it. I actually fainted just watching your video.
My response was actually pretty minimal. Chemo wasn't my biggest problem - it was rabbit ATG. Though I did feel nauseous and had some gnarly headaches, it wasn't anything terrible.
A transplant is scary on the surface. And it'll be difficult. But it's way worse in our heads than reality. If you'd like to talk more about it, please email me aplasticanemiamedia@gmail.com
Thank you. I have just finished cycle 1 of Induction therapy and had a VGPR after the first cycle. Cycle 2 is almost done. Have an appointment at our regional hospital to discuss the transplant option. As of now I am not convinced that the transplant is the right option for me personally.
How are you doing ? I hope you are getting stronger and doing well.
My goal is to move forward from MM and not have it so all consuming. Was diagnosed in Dec then my mother died, I started induction therapy Dec 15th. Plan is for 4 months.
I can say I've never heard of someone receiving chemo as a treatment option for Aplastic Anemia. But hey, if that's what the doctors say! And I am doing well. I posted my one year update video recently.
Waiting for your response.. really thanks sir
I was diagnosed last year for aplastic anemia I drove to the doctor's to have a blood test my hemoglobin was 32 I did the ATG in November for 12 hours a day for 4 days currently taking medication to keep the ATG active
My everything hurt when I did my ATG it felt like I went to the gym 90 times in a row then got hit by a truck while also having a weird burning sensation
@@Lemmispeak thank you for sharing your story. How your counts looking now after ATG? And I saw your comments on the other videos, so I’m going to stick to replying here 👍🏻
@@aplasticanemiamedia1 my blood is looking good right now my bloods are on the border of just about level but on the lower side
@@aplasticanemiamedia1 I can't say counts because I havnt been in about 2 weeks now next week I'm back in for more bloods
God bless you brother,, take care of your health,, my brother is also suffering from aplastic anemia, no HLA matches from siblings, present ATG treatment was going, is this work, how to find unrelated stem cells
Hi Rohini, thanks for commenting. The ATG treatment does work for a lot of people. It did not work for me in the long term. However, everyone is different.
In regards to finding a match, talk to your doctor about the worldwide bone marrow registry. The registry in the United States is called "Be the Match." My doctors worked with that organization to find a match for me. Please keep me updated on your brother's progress. God bless.
TQ for ur reply brother,, how is ur health , now hemoglobin, platelets all are in normal range
@@rohiniedunuri8544 My counts are all looking great
@@aplasticanemiamedia1 kk ,, take care
I have to undergo a Stem Cell transplant in 2024 because I developed a rare T Cell Lymphoma called Mycosis Fungoides which has become more and more aggressive and nothing seems to reduce it's progress.Misdiagnosed originally as Eczema and then Psoriasis until the tumour stage developed and they discovered what actually ailed me .
I am sorry to hear of your diagnosis. When is your transplant scheduled? You will crush it!
Depends on how long it takes for the Brentuxinab chemotherapy to stabilize the Mycosis Fungoides so guessing late 2024?
@@kevanhubbard9673 Understood, thank you. If you'd like to talk more about it, please email me at aplasticanemiamedia@gmail.com
Would this work for neurological disorders? And I hope you are keeping well
That is a question for your doctor. I can only speak on my own experience.
Brother i have NK-T cell lymphoma refractory 😭 and doctor of Aiims (India) told me about bone marrow transplant when will i get fine after transplant (allogeneic transplant)
I’m sorry to hear of your diagnosis. But a transplant is great because it can cure you. The recovery time takes a while, at least one year. But everyone is different. You can view my update videos to get more information.
I have cancer tooo…the best thing during chemo is the benidril lol
I had different drugs during my chemo, but once the Benedryl hit my bloodstream, it was lights out!
Oh yes, the Benadryl hits you like a truck!
Hope you are well.
My mom has this and is on chemo 5 days a week. 😢
Sending many prayers her way.
In which country & hospital u r doing u r bmt plz give me the information
Moffitt Cancer Center
@@aplasticanemiamedia1 how is u r health now , u r counts r improving or not plz update about u r health
@@swadkitchenbyruchirinki6455 my counts improved pretty quickly following transplant and I am doing great today. I plan to make an update video soon.
What The exact date of you transplant...and now a days what are your counts...and what medicine you will have to continue throughout the year...I am asking the information because my wife had transplant recently by 25th. May night...so kindly inform me...plz I have to give courage to my wife as well.. from Pakistan
I had my transplant January 31. I engrafted twenty days later on February 20. I’m on many medications and will be for the foreseeable future. They include acyclovir, bactrim, magnesium, cresemba, tacrolimus, and letermovir. How is your wife doing?
@@aplasticanemiamedia1 Thanx for response sir.. currently she is waiting for engraftment...
@@constructivelines engraftment takes time. Twenty days for me. 17 days is the average.
@@aplasticanemiamedia1 really very thanx can you share any other medium to conversation if convenient for you..
@@aplasticanemiamedia1 How many blood bags and platelets you transfused before your engraftment..kindly mention
Hi,..my baby also hve epelipsy diagnosis
Done ,. sending support pls thanks
Watching this on day +4
Apologies for my delayed response. How are you holding up?
@@aplasticanemiamedia1 doing good got out yesterday. Go back on the 16th for the final admission
is this different than a stem cell transplant?
Bone marrow transplant is an archaric name no?
No, it is not different than a stem cell transplant. Personally, I've always referred to it as a bone marrow transplant because that's what the general population calls it. Is it archaic? Probably.
Praying for a healing for him amen try cannabis oil and thc for cancer and worm medicine for animals to kill cancer amen
LGM!!!
🚶♂️🚶♂️🚶♂️
John 14:6
6 Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father, but by me.
John 3:7
7 Marvel not that I said unto thee, Ye must be born again.
Romans 3:23
23 For all have sinned, and come short of the glory of God;
Job 12:7-9
7 But ask now the beasts, and they shall teach thee; and the fowls of the air, and they shall tell thee:
8 Or speak to the earth, and it shall teach thee: and the fishes of the sea shall declare unto thee.
9 Who knoweth not in all these that the hand of the Lord hath wrought this?
Romans 10:9-10
9 That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved.
10 For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation.
JOHN 3:18
“He that believeth in Him is not condemned; but He that believeth not is condemned already, because he hath not believed in the name of the only begotten Son of God.
Yeah uh brown urine is a sign of kidney failure
Cant wait to see more updates from you. Hope you are doing well. Thank you for sharing your story. 💪💪
Congratulations, hope everything works out for you, my wife is day +18 and still her numbers have not moved but we are keeping our heads up that soon we see something move in the right direction.
Keep the faith. Waiting for engraftment was difficult. It sounds like she’s almost there. Please keep me updated on her progress.