Bone Marrow Transplant Advice | Tips for the Patient | Leukaemia | Lymphoma | Cancer
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- Опубліковано 19 жов 2024
- Here's a video that felt like it was needed! I hope this helps you in preparing, or supports someone else that is needing to prepare as well. Remember to please chuck below your comments of your own advice!
Let me know which videos you would like to see next !
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For myself being 2 and a half years post transplant, the best advice I can give anyone is to take things day by day and look at small advances as achievements. The first time I formed a halfway decent blood clot and saw my hemoglobin level above 11 excited me a lot. I would also suggest for someone to have a good support system of people who are easy going and are going to help you when you need it. Life is too short and with a BMT, there is no room for people who are unwilling to help you. Final word of advice: accept that whatever happens, happens and sometimes circumstances are just out of your control. You can’t control what happens, but you can control how you act, feel and view it.
Great advice Andy 👌👍 Congrats on 2.5 years 🎉
This is nice. Thanks 😊
God bless you all❤
My advice to everyone is like you said to EAT! gain weight and muscles! Personally after the complete remission i had 3 weeks to do the transplant and i started to lift weights at home and ate a alot.. you should eat everything you see infront of you.. but make sure you eat also clean and vitamins that would help you during the transplant.. back to the story, these 5 kilos i gained helped me and i lost them during the operation and that’s it! I didn’t lose more weight
My second advice is to not be influenced by others who had a transplant.. everyone is really different and has his own genetics and body.. and the Age/ Gender/ HLA identity/ if the Donor is your sibling or you get it from a stranger/ the type and intensity of conditioning regimen/ and there are more things which play a role.. so focus on yourself and DO EVERYTHING the doctors tell you and be positive and you will be fine my friend 🤞
Really appreciate this advice. Thank you. I am completing chemo at the moment with a plan to have STEM cell transplant. Am exercising every day and am on a plant based diet.
I have multiple myeloma and my bloodwork says ready for transplant. I’m excited and scared!! I was just happy I was losing a little weight. Now I will exercise and eat!! Thank you!! I want to get a great result!!!!! Thx thx thx
@@marshabohstedt1641how are you right now
I have not had my transplant (yet), however I have had one 30 day initial chemotherapy stay in the hospital and another much shorter round of chemotherapy for a 7 day stay. also in hospital. In addition, I had an unplanned 17 day stay in the hospital for a myriad of infections, not chemo, but definitely related to being immunosupressed. In any case, I found quite a few things that made my stays more comfortable. This included: my weighted blanket and another cozy blanket, a variety of chapsticks and lotions, photos of family, friends and of YOURSELF as a healthy person, lots of comfortable pajamas, my iPad and laptop, my own case of bottled water and electrolyte drinks to stay hydrated, and some citrus essential oils (just to sniff to brighten my spirits because the smell of hospital is kinda yucky). Hope this helps someone else!
Hey Theresa! Good to here you had your initial chemo therapy I hope you have found a donor and can start the process the sooner the better because the disease is aggressive so you want to stay ahead of it! I was diagnosed with AML & went into remission also and my brother is a donor so many blessings to you and may god be with you ❤
I just had the transplant 12 days ago. I feel that I’m doing well so far. My doc says that if my bloodwork results are where he wants them then I’ll be going home in 3-4 more days to a minimum 100 day isolation with a full time caregiver. I’m hoping for the best. Thanks for the emphasis on fluids and eating. I’m pretty bad on that.
I hope you’re going well and all the best for you recovery !
Congrats man. Hope you’re doing better 90 days later.
My daughter is on day +3
@@TV-ob1ifmiss how was it?? Am going to do it in 2 weeks
@@theoggaming8890 well. i can only give you a 3rd party point of view and i will say that she's in her recovery period now and doing wonderfully. That being said, I do realize you're probably scared and I hope i can give you some comfort that no matter how you feel during the prep and post recovery, stay focused on the other side which is going to be amazing. As far as my daughter goes, she mostly got sick from all the prep and recovery drugs, etc. etc. (vomiting and stomach issues mostly) and often times the drugs will mess with your mind so if you have someone there with you, that will be amazing. I am a big believer in God and Jesus so heavy prayer is always very good and positive during this time-frame. I don't know your name but I will pray for you that you recover fully, your numbers go up and that it never comes back.
My brother got AML on August 3, 2021. Then he underwent chemo for 5 days, but the chemo had to be stopped temporarily because harmful bacteria were found in the heart. Last month he had surgery on his heart. I hope he continues to improve and can continue chemo until he recovers
All my strength to your brother Mia! This is without a doubt a very difficult time for you and your brother. All the best with his recovery
I had very severe aplastic anemia. And 7 month post transplant. The most important part is a good support system, and anything easy to digest food. Nutrition is everything post Day 0. I have a pair up dietitian during the transplant, and it worths 100%!
L-glutamine supplements - reduces mucusitis and peripheral neuropathy side effects. (Approved by the transplant team)
Walk and walk as much as you can. It helps blood recovery.
I also brought my own pillow where I can barely sleep at the time, but it’s super helpful.
Honestly documenting and making videos similar to yours help me feel productive and seen (despite so much quarantine and hospital time).
Yes that’s very true! Thank you for sharing
Thanks for the pointers. My 9yo son needs a transplant for aplastic anemia. This def helps!
Thank you Tyler! Your videos have helped a lot. I have aplastic anemia and will be getting a transplant 1 week from today. I have been terrified, but seeing your journey has given me a lot of hope! 💙
I hope you are keeping well 🙏
And how are you at this time
I just got got diagnosed with treatment caused AML after beating Ewing sarcoma, and I’m suppose to get a transplant at some point and you’re videos have helped a lot.
Thank you Stone Curran, all my best to you with AML diagnosis and treatment. Always feel free to pop by
Thank yo for this. I have just opted for a stem cell transplant. Your tips will come in very handy.
I ~am~ significantly different from your situation. I'm 74. I had a heart attack at age 48. I am diabetic for the past 12 years, now mildly insulin dependent. I have CLL with a Richter transformation. Look it up, and it shows I should have died within 10 months post-diagnosis. I survived 36 months before things went south last April.
On the other hand, I just completed six weeks in hospital on 24/7 chemo infusion (1 wk on, 2 wks off, six cyles from June to mid September). Result: "100 percent metabolic response" and a PET scan that was tee-totally dark. Yippee!
The oncologist admitted that he doubted I would complete this chemotherapy. Honestly, I felt my best when undergoing the chemo (!). Doc says if I am EVER to undergo a transplant, NOW is the time to go for it. I am going to scour your videos for additional insights that will prepare me to weather what may lie ahead.
Best of luck to you, you got this! ❤️🙏
All my strength to you!!!
Thank you for share this with. I will get BMT on next few weeks. This video is really help me. Happy New Year. God blessed you all 🙏❤️
Hi IAM going in for a transplant , soon but in my 60 , and not looking forward to it. At all but thanks for the video , and all the best in life x
Tyler, I've learned a lot watching your VLOGs on BMT. Thank you. I have a very close friend about to embark on that stage of her Leukemia treatment. I will be by her side for the first couple months she gets home. I'm hoping you could do a video on things the layman caregiver/support system and friend/family can expect to deal with and hints on making it as comfortable as possible. Thank you.
Awesome tips, I'm set to get my BMT on July 22nd. Maybe I'll be able to come back to this video with some of my own advice.
Best of luck with it and please do !!
Make sure to leave your advice down below. And let me know what videos you'd like to see next !
tyler what an awesome support you are to others facing this battle.
I would tell anyone have a good support system in place. Make sure you take your own clothes for daily changing and keep a positive attitude. Side effects that they tell you to expect don’t focus on them. Everyone’s experience is different. Plan on just being there long enough to get the stem cells and recover. Expect to receive a transfusion or two of platets. The food normally sucks so if you have a support person whose willing to bring you dinner everyday that would be perfect.
That’s super advice! Thanks for sharing this 😊👌👍
My biggest fear is the side affects I was told I could have. Including death! I have 5 kids so afraid 😱 so I will try BLINATUMOMAB as option for now from MD Anderson. I’m in molecular remission. If that doesn’t work out I’ll have to do the dreaded transplant.
A Canadian gal here!! Thank You for this information I will be on that journey in the next month!! What are super dupers???
Eat eat eat (best advice) and try gain some muscle if possible, but gain wait before BMT
You are very brave and thanks for sharing the journey!
I was borderline diabetic with high blood sugar and so I felt limited in my diet as I tried to gain weight before the transplant. I also felt limited afterwards and so now, 10 months post transplant, I have still only put back on half of the 50 pounds (23 kg) that I lost (virtually none of which was fat as I was quite lean). I didn't want to solve my AML problem only to come out of it with full-blown diabetes.
As for things to bring, you may want to bring your own adult diapers. I developed bowel incontinence and really needed them and my hospital only had the cheapest and most difficult-to-use kind.
Great advice !
Keep trying. It took me 6 years to gain more muscle than fat partially due to medications and partially to not being able to exercise.
Hi. Whas your donor a 100% match? The Dr told me yesterday they can only find a 9/10 match for me
My BMT done
Hi Tyler my neice recently had her transplant interested in how long to wait to message her give her some time to recover and extra time to feel better very courageous young mum.
Hi Craig! :) If there is someone with her, ask them how she is going and if she is in a state to speak to others. Some patients after BMT are very good for visitors (I know I was), but others like their own privacy window. It can vary a lot!
@@TylerBlah need to give her some time do you think 4 weeks she will be feeling better just to give her encouragement message and how much we are thinking of her.
I’m scheduled for hospitalization on February 13th for my chemotherapy and transplant is 20th.
I have no support for this. What can I do?
Thank you,
You are welcome! :)
My husband is 62 years old.. We found out last Sept 2020 that he has a aml.... He undergo already the remission and the 4 consolidation ...he is now waiting for the bmt.... What advice would you give to him? Thank you
I’m 24 years out. Stay positive don’t ever think the worst. Just expect to be very weak but to get your energy back little by little and stay very safe as your immune system comes back. Stay positive. I did and I was surrounded by positive people. My only issue now is that 24 years later I have a fear of getting blood work for the results. It’s like I have been there and gone through something so traumatic and now I’m terrified to go anymore. So that’s a battle I have but I’m trying to overcome it. You will get through this and go on with life please keep me posted and let me know how it goes. Only think positive go through the process and be well after. God bless, Ryan
Eat lots and know that time heals most things during this treatment. These two simple things helped me a lot
Hi
I am 24 years out from my bone marrow transplant from my sister. How do I survive this health anxiety that I have and ptsd? Like I feel great but I’m terrified to this day to go to the doc anymore and get blood work done. It is just terrifying especially after
My last one that showed elevated enzymes slightly. Any advice? I’ve become a total hypochondriac. Thanks. And god bless you all.
Have you considered therapy or EMDR therapy? May be helpful to manage stress. Best of luck to you!
Thank you for sharing Ryan! This health anxiety is a lot, and I’ve read and discussed with others that this is one of the major side effects of the process! I believe it’s always important to make sure you have a psychologist that is experienced and you can chat to about these things, and then other patient support groups and a reliable network of friends.
Additionally, self awareness of those feelings is very important I’ve found personally. Keeping track of yourself is very important!
Thank you for the kind words. As much as being aware of myself is good it is also bad because then I imagine things and pains that aren’t really there and now I have to have blood work and I’m terrified. I don’t want to know. I feel fine and I just wish I could truly be ok and know that and be free. What are some good strategies leading up to this blood work. My mom is going with me so as to help me stay focused and not beat myself up the whole way to the lab. I will be using breathing techniques and things. I do have a therapist I see weekly about. So I’m just trying to get through this test now and trying to get through this week because I go Friday. I feel like a nervous breakdown at times. Then the waiting for results part and if something’s off my mind will race. I just get so exhausted. Thank you both for the replies.
Which hospital did you get your transplant done ?
At RPA in Sydney 😊
Cycle cells disease/ chemotherapy and bone marrow from the donner
Do you lose hair after bmt? Do you lose weight like after chemo? What was the worst symptom?
You can lose hair and you can lose weight, they are quite common symptoms, but multiple things can lead to different results. Worse symptoms vary from person to person. For me though, the worse is haemorrhagic cystitis from my own experience
@@TylerBlah thank you for your response! Did the chemo you got right before the BMT make you feel the same as the very first one you got? I’m so happy to know you’re doing well btw! 😃
hey Tyler, can I do a bone marrow transplant without being in remission? I have active Hodgkin's lymphoma, tried ICE chemotherapy and keytruda , and I couldn't get to remission before the bone marrow transplant, so can I do it without being in remission?
Hi Abed. I have Hodgkin’s lymphoma. I tried ABVD, ICE, Adcetris and with keytruda the cancer was stable but not gone. I did an BMT last month and I’ll do another one in May.
hey Lana, i really wish you a good luck in beating cancer.
I meet my doctor and he decided that I should take more two rounds of keytruda and then( two months later ) do the bone marrow transplant, menwhile he wants me to do a biopsy to know more about my cancer situation ... why you need to do bone marrow transplant twice ?
I'm newly diagnosed aml patient. I have completed 1st cycle of chemo(3+7 with midostaurin). Now I'm in remission in bon marrow but.26 percent still exist in MRD.do i need BMT in this situation? Plz help me to reply.
Hi Jahidul, each patient is unique and the doctors decisions are unique too. It's hard to guide what your treatment should be, but your doctor should be best to understand the most appropriate treatment for you
My only son expired three months before . Hehad aml diognsed within two months we lost him doinng second chemotherapy he was 28 years old very healthy very active suddenly he got fever by that time onlyhe had blood cancer doctor says 7+3chemotherapy he will be cured but we lost our son ongoing treatment only
So sorry to hear this Vinay. This would have been extremely difficult for you
My heart goes out to you for your son’s passing. Sending utmost prayers to you and your family.💔
I like your video
Thanks!
Question: There is a girl I follow in the Netherlands and she will be getting stem cells. Are bone marrow transplants just used for blood cancers? If you have cancer and it is in remission what is the need for a BMT?
Great question!
So the transplants are principally used for blood cancers. But there are some interesting trials happening around the world looking at their use in Multiple sclerosis.
And if you achieve a complete remission, you don't need one. But in the pre-transplant protocol, the molecular remission is based on the fact that your subtype is already likely to relapse/has in the past already. So the word molecular remission more accurately would say that it is just at a very low level. Rather than it is cured. Just part of the terminology
@@TylerBlah thank you.
I recently had a bone marrow transplant for aplastic anemia, so not technically cancer but still a blood disorder
Subbed!
Thanks Glitch!
What are super dupers?
My only 28years old son daignosed aml March last week go toinduction chemo therepi lot of infections he is in ICU thanone month later he discharged ofter ten days 2ndchemo doctoerstold high dosage of chemo they will give after a week he loss bloodcounts platelets counts lnfections are high 2days later his bp was low oxegen level low then shiffted ICU but no result I lost my son one month before is it correct what doctors do I never seen anybody in mylife this decees I don't no without my son how to live alone past one-month iam crying crying crying what to do some times I think to suiside why God do this cruyalty in my life my son was very good nobad habits very good human being why happpend like this in life
Hey I'm so sorry for your loss. My Dad is diagnosed with same and I'm also having above thoughts. It's just that you have to accept things the way they are. We would never know why us, why are we suffering but at the end we have to be strong and accept things. I think human life is a lot mystry and mysery. So God bless you to overcome the pain. Take care of yourself and at the end we always are on our own! So just try to be happy.
What blood type you had
Do you mean blood group?
@@TylerBlah yeah
Hii @tyler
How r u doing now?
Going very well now, have just posted a vlog update :)
@@TylerBlah i had a question see after the stem cells are giving to the patient! The blood, platlets,wbc count goes down after that or before the transplant after chemo is given ?