Being comfortable while uncomfortable, I can relate! I've had Multiple Myeloma for 8 years and treated non stop. I was diagnosed in 2003. I was treated and I did have 7 years of bliss along the way. Unknown and waiting for the shoe to drop can be scary. You are the only person who I know say Avascular Necrosis from steriods. I had it for years. My hip hurts daily. I look for joy in everyday!
Really glad that you described the difficulties after cancer treatment…the aftereffects hit me hard too I had lymphoma ( mix of Hodgkin/Non Hodgkin) then years later metastatic breast cancer two times in a row It damaged my heart and I got lupus of the skin during treatment for example..not to mention fungus diarrhoea lunginfection etc Now that I am over it and waiting for it not to strike again I am weak and depressed a lot of times. I am so angry with myself..my survival costed society so much ,I only should be grateful,shouldn’t I? Fought so hard to live and now this dear Meredith..I really liked your type of telling the story ..itresonated in so many ways.. If you would like to contact people ..please leave a comment I am not some criminal ..60 year female..retired small animal doctor mother of three😁👍🏻🇧🇪from Belgium
Meredith, I have so much respect for your courage and strength ( I appreciate it hasn’t been an easy path for you) I can relate to your health issue(s) regarding steroids ( I have Sarcoidosis and, will probably be in them for life, a small dose 5mg) I have been in them for nearly 5yrs at the start it was a higher dose, then last year my Consultant decided to tapper my dose down to 1mg . I wanted to come if them completely. But, it just didn’t work for me,One of the reasons why I wanted to come off them was my hair was thinning and falling out. When I did get down to 1mg and off them for a week or so, I found I was so tired and lethargic. Also I became horrendously plagued with anxiety. So, I’m still on them. I apologise Meredith, for the rant. You are such a beautiful human being and relatable. I truly wish and pray to God that your health will be fully restored ( I believe in Miracle’s) I wish YOU all the very best. ( you have the warmest, beautiful smile) Courageous and a Real Inspiration not only to me, but, to others. God Bless You Meredith much love From Northern Ireland.💚♥️💚♥️💚
So nice to watch this. Our family has attended your GVHD conferences and we appreciate them very much. IveI am a cancer and GVHD Mama with a wonderful son who lives with us. He has tried many therapies for his sclerotic skin. We need more treatments! Thank you for bringing awareness and education re: GVHD. We need a cure!
I am survivor of AML with Flt 3 mutation was given a bone marrow transplant June 8th, 2017. I was told I had allergies over having a cough and hearing my heartbeat loud in my ears/head, to the point I couldn't be in a quiet room, was given medicine for allergies and to go home. Finally my right eye went almost blind after dealing with colds back to back, extreme fatigue, lost weight, etc. I was sent to emergency from urgent care because urgent care thought my eye was the problem and that I would die if I didn't get it taken care of NOW. I will never forget the Dr in ER telling me that I had Leukemia. First thing out of my mouth was am I going to die? My white blood count was through the roof, and I had tachycardia. I was treated at Keck USC Norris Cancer hospital in L.A 2 hours away from my home. So I had to stay in L.A for the recovery of my transplant the 100 days. Insurance doesn't cover a place to stay even though it is mandatory that you stay close to the hospital with caregivers in place, otherwise they will not proceed with a bone marrow transplant. I have GVHD of the skin and eyes that was acute and went over into chronic. Oncology is blunt! they have to be they can not sugar coat cancer. I remember the Drs would scare the hell out of me! I can not thank them enough though.
Glad that you came through it. I can’t imagine what you have been through. It’s a struggle you didn’t ask for, and at such a young age, but I’m sure that it made you stronger in the long run. God be with you 🙏🏼
I am so sorry the doctors allowed you to hear their argument outside your hospital door. Highly unprofessional and something hospitals have had to address, unfortunately with policies to protect privacy and patients. I am an experienced Medical Technologist (laboratory) and it is extremely difficult to differentiate Mononucleosis and Leukemia. I worked in a clinic on campus and seen it missed by experienced technologists. I happened to work in Pediatric cancer prior to my campus job and looked at the slide the next time a patient just like you presented and knew it wasn’t Mono. I could definitely see WHY it was missed-that age group always has positive Mono and their cells look all kind of crazy. Sometimes their platelet counts even drop (mimicking a common leukemia symptom). I knew the difference by scanning the entire slide and also by the symptoms that not only platelets were dropping but also hemoglobin and hematocrit (red blood cells) that it was not Mono. Leukemia blasts (the cancer cells) look different than the reactive cells seen on a slide from a Mono patient but the difference is subtle, a difference only techs that have seen hundreds of cancer cells might detect. The other issue is that childhood cancer is so extremely rare it throws off caregivers as an initial diagnostic possibility. I am so sorry for your experience at diagnosis. Hopefully that scenario wouldn’t still happen today but I still suspect it happens.
Thank you. In 1959, when I was eleven, I developed symptoms of either mono or leukemia. I had a pediatrician but for some reason the Health Department came to my house to do blood work (maybe because mononucleosis is contagious so I wasn’t allowed to leave the house). They needed to know if I had mono or leukemia. Fortunately, it was mononucleosis. When I got older, I learned how similar the symptoms are.
Your story hit me because i have swollen lyphnodes and night sweats to the point of every nite the doctors refuse to take me seriously i feel desperate im doing the diet and following natural advise but feel like giving up it hurts under my arms i have no appetite weight loss joint pain and swelling
My brother was just diagnosed. He is having the state of the new art treatment using his DNA to formulate the custom protocol to fight the cancer cells. He was told they will put this formulated "medicine" into his body 7 days in row and he will be done with his treatment. This is being done at the Ann Arbor, Mi VA by U of M cancer physicians.
Hello Donna, 22 year survivor of AML MM2 here. It's exciting how protocols have changed. At the time my treatment was state of the art. They don't even call my leukaemia MM2 anymore; they reclassified everything. I had no translocations and was considered intermediate risk and I underwent an autologous PBSCT (peripheral blood stem cells transplant) which obviously worked. It wasn't easy or fun but nor was it all doom and gloom. I got through it by putting life as I knew it on hold for the duration and took each day one step at a time. I wish your brother all the best navigating his treatment.
I’m so sorry she spent time feeling survivor’s guilt. Her bone marrow would probably have not helped even one person during and right after 9/11. And her dying would have helped no one and devastated those who loved her. As a breast cancer survivor, I think most cancer survivors have some degree of PTSD. I wish Meredith all the best.
My daughter has aml and the doctor has giving her 85percent chance of beating this but she’s terrified it will come back.she has two kids and fighting hard
I work in a blood bank. I have to check diagnoses in patient's charts. For new leukemias, its almost always starts as a fever, up to a few weeks. Ive noticed we get more new leukemics in the winter. Totally unscientific, but just an observation. Also, flu season brings more blood antibody problems like warm autoantibodies. Dont see as many in the summer months. Covid tends to bring on cold autoagglutinin antibodies.
Just wondering how did your relationship progress with the boyfriend you had at diagnosis? And were you able to go back to art school and complete your education? Or did the experience with AML cause you to take a different path in life?
Did you have any problems with extreme anxiety and depression with the disease but adding the high dose steroids too. I am unable to sleep on high doses of steroids and the cause extreme mood swings.
Did you have any problems with extreme anxiety and depression with the disease but adding the high dose steroids too. I am unable to sleep on high doses of steroids because they cause extreme mood swings. I would be happy, mad and sad and crying uncontrollably over things that don’t normally bother me. I had terrible stomach pain on them too.
Being comfortable while uncomfortable, I can relate! I've had Multiple Myeloma for 8 years and treated non stop. I was diagnosed in 2003. I was treated and I did have 7 years of bliss along the way. Unknown and waiting for the shoe to drop can be scary. You are the only person who I know say Avascular Necrosis from steriods. I had it for years. My hip hurts daily. I look for joy in everyday!
Really glad that you described the difficulties after cancer treatment…the aftereffects hit me hard too
I had lymphoma ( mix of Hodgkin/Non Hodgkin) then years later metastatic breast cancer two times in a row
It damaged my heart and I got lupus of the skin during treatment for example..not to mention fungus diarrhoea lunginfection etc
Now that I am over it and
waiting for it not to strike again I am weak and depressed a lot of times.
I am so angry with myself..my survival costed society so much ,I only should be grateful,shouldn’t I?
Fought so hard to live and now this
dear Meredith..I really liked your type of telling the story ..itresonated in so many ways..
If you would like to contact people ..please leave a comment
I am not some criminal
..60 year female..retired small
animal doctor mother of three😁👍🏻🇧🇪from Belgium
OMG - SO SORRY FOR YOU
My heart goes out to you❤
@@junefreeman7955 thank you💕
@@deedt8279 thank you💕
Your positive attitude is so refreshing!!! Love your haircut on it! It’s perfect! God bless you!
May you continue to live your life by being grounded.
It's NOT EASY at all
You have amazing courage- God bless you
Meredith, I have so much respect for your courage and strength ( I appreciate it hasn’t been an easy path for you) I can relate to your health issue(s) regarding steroids ( I have Sarcoidosis and, will probably be in them for life, a small dose 5mg) I have been in them for nearly 5yrs at the start it was a higher dose, then last year my Consultant decided to tapper my dose down to 1mg . I wanted to come if them completely. But, it just didn’t work for me,One of the reasons why I wanted to come off them was my hair was thinning and falling out. When I did get down to 1mg and off them for a week or so, I found I was so tired and lethargic. Also I became horrendously plagued with anxiety. So, I’m still on them.
I apologise Meredith, for the rant.
You are such a beautiful human being and relatable. I truly wish and pray to God that your health will be fully restored ( I believe in Miracle’s)
I wish YOU all the very best. ( you have the warmest, beautiful smile)
Courageous and a Real Inspiration not only to me, but, to others.
God Bless You Meredith much love
From Northern Ireland.💚♥️💚♥️💚
So nice to watch this. Our family has attended your GVHD conferences and we appreciate them very much. IveI am a cancer and GVHD Mama with a wonderful son who lives with us. He has tried many therapies for his sclerotic skin. We need more treatments! Thank you for bringing awareness and education re: GVHD. We need a cure!
You're a lovely person, thanks for the video.
I am survivor of AML with Flt 3 mutation was given a bone marrow transplant June 8th, 2017. I was told I had allergies over having a cough and hearing my heartbeat loud in my ears/head, to the point I couldn't be in a quiet room, was given medicine for allergies and to go home. Finally my right eye went almost blind after dealing with colds back to back, extreme fatigue, lost weight, etc. I was sent to emergency from urgent care because urgent care thought my eye was the problem and that I would die if I didn't get it taken care of NOW. I will never forget the Dr in ER telling me that I had Leukemia. First thing out of my mouth was am I going to die? My white blood count was through the roof, and I had tachycardia. I was treated at Keck USC Norris Cancer hospital in L.A 2 hours away from my home. So I had to stay in L.A for the recovery of my transplant the 100 days. Insurance doesn't cover a place to stay even though it is mandatory that you stay close to the hospital with caregivers in place, otherwise they will not proceed with a bone marrow transplant. I have GVHD of the skin and eyes that was acute and went over into chronic. Oncology is blunt! they have to be they can not sugar coat cancer. I remember the Drs would scare the hell out of me! I can not thank them enough though.
Glad that you came through it. I can’t imagine what you have been through. It’s a struggle you didn’t ask for, and at such a young age, but I’m sure that it made you stronger in the long run. God be with you 🙏🏼
I am so sorry the doctors allowed you to hear their argument outside your hospital door. Highly unprofessional and something hospitals have had to address, unfortunately with policies to protect privacy and patients. I am an experienced Medical Technologist (laboratory) and it is extremely difficult to differentiate Mononucleosis and Leukemia. I worked in a clinic on campus and seen it missed by experienced technologists. I happened to work in Pediatric cancer prior to my campus job and looked at the slide the next time a patient just like you presented and knew it wasn’t Mono. I could definitely see WHY it was missed-that age group always has positive Mono and their cells look all kind of crazy. Sometimes their platelet counts even drop (mimicking a common leukemia symptom). I knew the difference by scanning the entire slide and also by the symptoms that not only platelets were dropping but also hemoglobin and hematocrit (red blood cells) that it was not Mono. Leukemia blasts (the cancer cells) look different than the reactive cells seen on a slide from a Mono patient but the difference is subtle, a difference only techs that have seen hundreds of cancer cells might detect. The other issue is that childhood cancer is so extremely rare it throws off caregivers as an initial diagnostic possibility. I am so sorry for your experience at diagnosis. Hopefully that scenario wouldn’t still happen today but I still suspect it happens.
Thank you. In 1959, when I was eleven, I developed symptoms of either mono or leukemia. I had a pediatrician but for some reason the Health Department came to my house to do blood work (maybe because mononucleosis
is contagious so I wasn’t allowed to leave the house). They needed to know if I had mono or leukemia. Fortunately, it was mononucleosis. When I got older, I learned how similar the symptoms are.
Really appreciate you sharing your story. You are a real inspiration. Just to keep going against all odds. Love you 😘🤗🙏
In 1991 my mum died with six days from this she was 43 xx
🙏 ❤️ 🙏
For You
Always & Forever
God bless you, I wish , a long healthy , happy life for you 🇦🇺🙏🍀
I am glad you found your way to the Cleveland Clinic.
UFF - 23 YEARS OF BAD HEALTH - HOW CAN YOU STAY SO POSITIVE - I FEEL FOR YOU
Your story hit me because i have swollen lyphnodes and night sweats to the point of every nite the doctors refuse to take me seriously i feel desperate im doing the diet and following natural advise but feel like giving up it hurts under my arms i have no appetite weight loss joint pain and swelling
I would insist on tests.
You need a second opinion drs don't know everything you need to b your own advocate
GO TO THE ER!!
Just walk in to the ER
It’s your life
Be proactive
It’s time to get a new doctor
R2i1rtyy
Currently I also have leukemia I am in a CA hospital
My brother was just diagnosed. He is having the state of the new art treatment using his DNA to formulate the custom protocol to fight the cancer cells. He was told they will put this formulated "medicine" into his body 7 days in row and he will be done with his treatment. This is being done at the Ann Arbor, Mi VA by U of M cancer physicians.
Hello Donna, 22 year survivor of AML MM2 here. It's exciting how protocols have changed. At the time my treatment was state of the art.
They don't even call my leukaemia MM2 anymore; they reclassified everything. I had no translocations and was considered intermediate risk and I underwent an autologous PBSCT (peripheral blood stem cells transplant) which obviously worked. It wasn't easy or fun but nor was it all doom and gloom. I got through it by putting life as I knew it on hold for the duration and took each day one step at a time. I wish your brother all the best navigating his treatment.
Bless you
I’m so sorry she spent time feeling survivor’s guilt. Her bone marrow would probably have not helped even one person during and right after 9/11. And her dying would have helped no one and devastated those who loved her.
As a breast cancer survivor, I think most cancer survivors have some degree of PTSD. I wish Meredith all the best.
Please tell me you're still with us 🙏❤️🙏❤️....
What did your blood labs looked like?
My daughter has aml and the doctor has giving her 85percent chance of beating this but she’s terrified it will come back.she has two kids and fighting hard
Doctors have to take a training how to communicate with patients 😢😮....Be compassionate ❤
Yes they have to think what this was me or my family member going through this or what if I or a family member do in the future.
I work in a blood bank. I have to check diagnoses in patient's charts. For new leukemias, its almost always starts as a fever, up to a few weeks. Ive noticed we get more new leukemics in the winter. Totally unscientific, but just an observation. Also, flu season brings more blood antibody problems like warm autoantibodies. Dont see as many in the summer months. Covid tends to bring on cold autoagglutinin antibodies.
❤
Just wondering how did your relationship progress with the boyfriend you had at diagnosis? And were you able to go back to art school and complete your education? Or did the experience with AML cause you to take a different path in life?
Did you have any problems with extreme anxiety and depression with the disease but adding the high dose steroids too. I am unable to sleep on high doses of steroids and the cause extreme mood swings.
If the bones die..did you have broken bones?
Interesting. So many drugs yet still ill. 😳
Did you have any problems with extreme anxiety and depression with the disease but adding the high dose steroids too. I am unable to sleep on high doses of steroids because they cause extreme mood swings. I would be happy, mad and sad and crying uncontrollably over things that don’t normally bother me. I had terrible stomach pain on them too.