This year has been so hard on my family. My 27 year old twin sister was recently diagnosed with ovarian cancer and now my mother has just been diagnosed with myelodysplastic syndrome multilineage dysplasia. My heart is completely broken, please keep my family in your prayers 🙏
My father was recently diagnosed and dont know what to do. Is stem cell therapy the way to go? Or giving bags of blood, platelets. What about white cells?
your comment gives me hope. my mom just got diagnosed over thanksgiving. it sounds bad from what the doctors told her, her platelets are the worst followed by red blood cell. white blood cell seems ok. not sure what the future holds but i'm hoping to have her around a bit longer.
Wow she was a true bad ass. I had to have several months of transfusions and it was rough! Didn't know how long I could keep living on other people's blood. Doing way better now....incredible caring Dr's and loving friends & family saved me.
I just shared your videos with my classmates in Facebook since we recently started hematology and now you're sharing these syndromes with us. I can't even begin to thank you for all of your effort.
Thank you for this video. Although I thought at first I was intermediate risk (5-10% blast), it turns out that I was high risk. Like your video explains the "Clinical Risk Status" is determined by several factors. My bone marrow biopsy indicates that all 3 cells are affected (trilineage) and there are 2 chromosomes missing in my genetic code. I begin Azacitidine next week and then hope for a perfect bone marrow match down the road. I signed up for a clinical study introducing Magrolimab in combo w/ Azacitidine. I pray I respond well.
@@abdelwadoudstelzer8863 Thank you. It has gone well. I've been receiving the combination of the 2 chemos to keep the MDS at bay. I've done 4 cycles. Of course, a few bumps in the road, but hey we found 3 matches in Europe. I hope to be hospitalized by mid March for the transplant. God willing.
@@musicsymphony1461 I'm still kickin'. Sadly, none of my siblings were a good match. So, I received the bone marrow from a non related 9/10 match. She is a 19yo in Europe. Woohoo! I won't have her details until a year past the transplant...May 2023. I'd like to somehow thank her in person. My numbers are great. So far, no rejection. Thank God. My next bone marrow biopsy will be in April. We'll see..
I've been diagnosed with unclassified mds 2 years ago, i've had 21 blood transfusions with no iron build-up and 6 bone marrow aspirates, i'm now on list for a bone marrow transplant in mexico
@@britishlonghorn6815 i am now at 70 blood bags and massive iron overload, but i'm fighting like hell, and according to my blood tests and other medicines i'm taking, i'm apparently winning c:
@@SantyBoyMXcan I ask you what the medication you were starting .? My father has Secondary MSD I am really scared if the medication that he take is enough or not / give me the medical plan for your treatment thank you I hope you will be fine ❤
@@fayhaalmutairi6486 see that's the thing, i'm in no meds since my blood counts are highly variable, one time i can be really fine and next thing you know my hemoglobin, platelets and leukocytes drop to lethal levels, i've had 7 bone marrow aspirates and my doctors agree it's mds, but can't give me any medication yet because of the high variability rates of my stem cells
As a youngster growing up in St. Louis, Missouri, my home was dusted with Utah atomic test radioactive fallout. I collected some. "What" I thought, "this powder doesn't hurt me." I felt nothing, so I thought it couldn't be harmful. WRONG. Decades can pass from exposure to radioactivity and radiation exposure health effects. In my case? Most of my life. I had no clue. In fact long delayed response to exposure to radioactivity has just been recognised by a few medical experts.
I was just diagnosed with MDS, my portal has the results but I don’t see my doctor for another 10 days. I am currently 15% blasts. Do the blasts increase over time and if so is there a way to stop the progression and what’s the treatment for doing so? Thanks so much!
I have MDS with, my platelets are extremely low, virtually no white blood cells. And half of my Red Blood cell count. Mine was caused by pill form chemotherapy for my ulcerative colitis.
I'm 26 and was diagnosed with this about a year ago. Been doing good :D Do you think that it would be helpful if we somehow create a community where we can share our treatment or progress? Stay strong, this is nothing we can't beat :)
@@a01223772 i am also diagnosed with mds recently... Now depended on blood transfusion... I am 28. Can you please suggest me the best treatment for this diaease
Guys pls let me know if mds progresses in 2 weeks? My husband had his bone marrow biopsy done twice but it nothing was found, but his symptoms were related to mds is what doctors are saying. Pls help me guys pls pls plss
Ive had it for about six years. I get cbc blood tests weekly and procrit injections. The blood draws let the mds clinic know my dosage of procrit which changes every few months, sometimes I skip injections when told to. Im weak and dizzy but alive
Is there any evidence that MDS is hereditary/genetic?? My paternal grandfather had MDS (supposedly from radiation). And now i have severe bone pain, rapid weight loss (15lbs in a month), night sweats for 3 months, low appetite, etc. My dr is now ordering more tests. Im female , 45 yrs old
@@_captainmagic First of all, im sorry if my english so bad and perhaps u cant understand what im saying 😞🙏 Since he passed away, i always have desire to kill my self... Its like i keep hurting my self i know its wrong, but i cant hold it anymore and i still cant believe that he passed away 😭😭😭 i keep talking to his photo tell all of my daily activities. Before he passed away, we always telling each other about our daily activities, so me and him always knowing what our daily activities in every single day. And if i remember that hes already gone, suddenly i crying again all day all night long 😭 thats make my tears wont come out anymore just because i always crying 😭😭😭 i really wanna suicide coz i think he will feel alone there and if im with him he wont feel lonely anymore. And also i have no reason to life again. I live with my family but they just suck and not helping me through this 🙂 My question is how do you heal your self from this? Its hard for me i mean really really hard help me 😭😭😭
@@howphancy 72 years with no previous medical history. Within 3 month of diagnosis died. Actually went to the hospital in the DFW area for a blood transfusion,and was planning on firing his oncologist on Monday was admitted to hospital for an infection and by Friday afternoon was dead! Never got to fire the oncologist.
40%-50% chance it turns in leukemia.. I was told you have a 4% chance over your life time it could turn into leukemia???? Someone help me on this bc I just got diagnosed with PV
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This year has been so hard on my family. My 27 year old twin sister was recently diagnosed with ovarian cancer and now my mother has just been diagnosed with myelodysplastic syndrome multilineage dysplasia.
My heart is completely broken, please keep my family in your prayers 🙏
We will! Thanks for sharing! ❤️
🙏🙏
My father was recently diagnosed and dont know what to do. Is stem cell therapy the way to go? Or giving bags of blood, platelets. What about white cells?
My mother had MDS and lived with all the symptoms and blood transfusions for about 10 years. She was a trooper.
your comment gives me hope. my mom just got diagnosed over thanksgiving. it sounds bad from what the doctors told her, her platelets are the worst followed by red blood cell. white blood cell seems ok. not sure what the future holds but i'm hoping to have her around a bit longer.
Even my mom is diagnosed with MDS
Wow she was a true bad ass. I had to have several months of transfusions and it was rough! Didn't know how long I could keep living on other people's blood. Doing way better now....incredible caring Dr's and loving friends & family saved me.
@@scott5107 Wonderful that you're feeling so much better now. Hope it continues!
Sherri thank you!🙏
I just shared your videos with my classmates in Facebook since we recently started hematology and now you're sharing these syndromes with us. I can't even begin to thank you for all of your effort.
Best presentation I've ever seen on this topic. Thank you so much!! :) It helped me immensely to get the studying on MDS started.
Glad it was helpful, Tiago! Best of luck with your studies! 😊
This helps me understand better, my son passed on from having this condition which could not be cured, he was 27 going on 28 this year
I am 39 and scared
Another high quality content, kudos to osmosis team!
Thank you for this video. Although I thought at first I was intermediate risk (5-10% blast), it turns out that I was high risk. Like your video explains the "Clinical Risk Status" is determined by several factors. My bone marrow biopsy indicates that all 3 cells are affected (trilineage) and there are 2 chromosomes missing in my genetic code. I begin Azacitidine next week and then hope for a perfect bone marrow match down the road. I signed up for a clinical study introducing Magrolimab in combo w/ Azacitidine. I pray I respond well.
Hi James! Thanks for sharing! Glad you like our video. Keeping you in our thoughts. 🙏🏼
Hey, how's it going so far? I pray it goes well for you.
@@abdelwadoudstelzer8863 Thank you. It has gone well. I've been receiving the combination of the 2 chemos to keep the MDS at bay. I've done 4 cycles. Of course, a few bumps in the road, but hey we found 3 matches in Europe. I hope to be hospitalized by mid March for the transplant. God willing.
@@jamesbon1 hey !How are you doing ?
@@musicsymphony1461 I'm still kickin'. Sadly, none of my siblings were a good match. So, I received the bone marrow from a non related 9/10 match. She is a 19yo in Europe. Woohoo! I won't have her details until a year past the transplant...May 2023. I'd like to somehow thank her in person. My numbers are great. So far, no rejection. Thank God. My next bone marrow biopsy will be in April. We'll see..
I've been diagnosed with unclassified mds 2 years ago, i've had 21 blood transfusions with no iron build-up and 6 bone marrow aspirates, i'm now on list for a bone marrow transplant in mexico
How are you doing now, Champ?
@@britishlonghorn6815 i am now at 70 blood bags and massive iron overload, but i'm fighting like hell, and according to my blood tests and other medicines i'm taking, i'm apparently winning c:
@@SantyBoyMXcan I ask you what the medication you were starting .? My father has Secondary MSD I am really scared if the medication that he take is enough or not / give me the medical plan for your treatment thank you I hope you will be fine ❤
@@fayhaalmutairi6486 see that's the thing, i'm in no meds since my blood counts are highly variable, one time i can be really fine and next thing you know my hemoglobin, platelets and leukocytes drop to lethal levels, i've had 7 bone marrow aspirates and my doctors agree it's mds, but can't give me any medication yet because of the high variability rates of my stem cells
This is one of the best videos I have seen regarding MDS. Thank you very much.
You're very welcome! 🥰
I love her voice. She sounds very assertive.
My mom died in May at 84 years old. She had MDS for probably 10 years. Treatment was injections to up her % of hemoglobin in her blood.
My father diagnosed with MDS last year and been given blood transfusion every month...
It explains the topic in the most general way
This is a great video! Well presented information and narrator! Well done 👍👍
Thank you so much! 😀
Excellent video, can you make video on treatment as well. It would be really helpful
Thank you so much for explaining in easy to follow and in simple terms.
We appreciate the feedback 💕
Thank you very much to simplify this complicated topic
Glad to help! 😊
Glad to help! 😊
Glad to help! 😊
Amazing videos! I really love osmosis videos ,they are really helpful!
As a youngster growing up in St. Louis, Missouri, my home was dusted with Utah atomic test radioactive fallout. I collected some. "What" I thought, "this powder doesn't hurt me." I felt nothing, so I thought it couldn't be harmful. WRONG.
Decades can pass from exposure to radioactivity and radiation exposure health effects. In my case? Most of my life. I had no clue. In fact long delayed response to exposure to radioactivity has just been recognised by a few medical experts.
I was just diagnosed with MDS, my portal has the results but I don’t see my doctor for another 10 days. I am currently 15% blasts. Do the blasts increase over time and if so is there a way to stop the progression and what’s the treatment for doing so?
Thanks so much!
Please make a video on severe combined immunodeficiencies
I have MDS with, my platelets are extremely low, virtually no white blood cells. And half of my Red Blood cell count. Mine was caused by pill form chemotherapy for my ulcerative colitis.
I hope you'll be okay, cheer up! ❤
Wow so sorry to hear that.
The same thing happened to me. I've been in treatment since Feb. 2019. Still up and about! Hang in there!
My grandpa has been diagnosed with MDS-EB1, I would like to know more about it.
Very informative. Thank you.
Great explain ...thank you....🎉
You are welcome! 🙏🏼
Thank you very much for this great video
Most welcome! 🙏🏼
Very nice presentation
thanks alot best explanition dear i really understood thanks more
Our pleasure! 🤓⚡️ 🙌🏼
The best treatment is imetelstat
(Remissions )
Can you please elaborate...
Wow this is an awesome summarize
Can you get shoulder pain in the joint
With mds
I was diagnosed with high grade MDS 3 months ago. I struggle with shoulder pain. I take Tylenol daily. It helps a little.
Very informative
Short and sweet
This was so great, thanks.
Glad you enjoyed it!
My mother passed away yesterday due to chemo induced MDS, she had cancer thrice before this
We're sorry for your loss 🙏🏼
Excellent
My sister has this. She is 20!!
Much love to your sister. Tell her to STAY strong! She can beat it!
I'm 26 and was diagnosed with this about a year ago. Been doing good :D Do you think that it would be helpful if we somehow create a community where we can share our treatment or progress? Stay strong, this is nothing we can't beat :)
@@a01223772 are u ok rn? I hope u will be okay...
@@a01223772 i am also diagnosed with mds recently... Now depended on blood transfusion... I am 28. Can you please suggest me the best treatment for this diaease
Wow. Thanks for sharing
Thanks osmosis
Any time, Waqas! 💫
Guys pls let me know if mds progresses in 2 weeks? My husband had his bone marrow biopsy done twice but it nothing was found, but his symptoms were related to mds is what doctors are saying. Pls help me guys pls pls plss
Ive had it for about six years. I get cbc blood tests weekly and procrit injections. The blood draws let the mds clinic know my dosage of procrit which changes every few months, sometimes I skip injections when told to. Im weak and dizzy but alive
Thank you so much
🥰❤️🙏🏼
Is there any evidence that MDS is hereditary/genetic?? My paternal grandfather had MDS (supposedly from radiation). And now i have severe bone pain, rapid weight loss (15lbs in a month), night sweats for 3 months, low appetite, etc. My dr is now ordering more tests. Im female , 45 yrs old
thanks a lot!
Can MDS cause severe Bone Pain??
thank u
Just a couple of hours ago we lost an 80 year old DNAR patient with MDS and AKI on CKD due to Pulmonary edema in the ER :/
My dad has this cancer. Cancer in the bone marrow. His cancer can could form in liekuma..
With myloplastic does anyone get pains in there feet .knees .going dizzy.
What is my life expectancy? I never got chemo
good
thanks alot dear
Most welcome, Hamdi! 😊
Great
My dad died from this earlier this year. I'm still trying to understand what this cancer is.
My bf passed away from this too 😞😢
@@helemganteng9560 my condolences
@@_captainmagic yeah it happened on 03 september 2021 😢 a week a go 😭... Thank you.. 😭
Can i ask u question?
@@helemganteng9560 Go ahead and best of luck with your grief journey, the beginning is tough
@@_captainmagic First of all, im sorry if my english so bad and perhaps u cant understand what im saying 😞🙏
Since he passed away, i always have desire to kill my self... Its like i keep hurting my self i know its wrong, but i cant hold it anymore and i still cant believe that he passed away 😭😭😭 i keep talking to his photo tell all of my daily activities. Before he passed away, we always telling each other about our daily activities, so me and him always knowing what our daily activities in every single day. And if i remember that hes already gone, suddenly i crying again all day all night long 😭 thats make my tears wont come out anymore just because i always crying 😭😭😭 i really wanna suicide coz i think he will feel alone there and if im with him he wont feel lonely anymore. And also i have no reason to life again.
I live with my family but they just suck and not helping me through this 🙂 My question is how do you heal your self from this? Its hard for me i mean really really hard help me 😭😭😭
my older brother recently died due to MDS!
So sorry for your loss. How old was your brother? 😢
@@howphancy 72 years with no previous medical history. Within 3 month of diagnosis died. Actually went to the hospital in the DFW area for a blood transfusion,and was planning on firing his oncologist on Monday was admitted to hospital for an infection and by Friday afternoon was dead! Never got to fire the oncologist.
@@jhernellmusic 😢🫂 I lost my brother too (motorcycle accident) I can feel your pain. So sorry.
40%-50% chance it turns in leukemia.. I was told you have a 4% chance over your life time it could turn into leukemia???? Someone help me on this bc I just got diagnosed with PV
My dad passed away from this year
My bf also passed away 5 days ago because of this 😭
Yang milih allah like yg Mili dajal hirawkan 1:39.........m
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❤️❤️❤️
Second!
First