My dad was diagnosed with Multiple Myeloma on July 1st and he died the next day 💔 He didn't complain of pain and I seen him every day! My heart is absolutely broken...I don't understand why or how this happened...The Dr said it had spread everywhere absolutely everywhere! I feel so angry! We buried him Friday 😭 Thank you so much for sharing your story...I've been trying to figure out what this multiple myeloma is... 💔 I'm so happy you are doing so well...Bless you ❤️
My mom had multiple myeloma and her pain was in her leg and she was told the same thing. You have lesions all over your skeleton. she was devastated. I never saw my mom cry like that. She was scared and she even said I wish I didn't know. That was 18 years ago and there really wasnt a lot of choices for her. Glad to hear this woman had a better outcome.
I was diagnosed with MULTIPLE MYELOMA also in 2010. I had tandem autogolous stem cell transplants in 2011. I’ve been in remission since. It was a completely insane experience. My kids were 2,4 and six when I was diagnosed. I have terrible ptsd every year as I’m getting my yearly blood tests.
I was diagnosed with SMM in 2020. FISH showed genetic markers for a high probability for progression to MM with poor prognosis. We are a higher-income household and I still have no idea how we'll be able to afford transplants and treatment even with insurance. At this point, I'm not sure I'm willing to rack up enormous amounts of debt to even attempt treatment with my markers. I think I'd prefer to enjoy as many healthy days as possible and give my family the gift of no debt to worry about and pay for long after I'm gone anyway. With all the wealth in this world, that any of us has to consider the financial ramifications of treatment in the slightest is very sad.
In almost every, if not every other developed country in the world this is not a choice you would have to make. Suggestion. India, has medical tech every bit as advanced as Western countries and I remember reading that stem cell transplants are around 20 or 30k or close to that amount.
@@Elizabeth_Parsons_327 We are lower Income household. My husband received a scholarship for ALL of his Treatments for 4 years. The ONLY thing we paid for were his every day drugs, not related to the Cancer. Thank the Lord, because he didn’t want me to be in Debt, when he was gone.
My 78 year old dad is in the process of being diagnosed with MM. They did the biopsy today, and it was excruciatingly painful for him. His kidneys are failing, and his back is crumbling. They said if he's diagnosed, he has about 3 months left to live.
My husband died from Multiple Myeloma 6/29/22, after 2 years of Treatment, every week. Every week he was told he was getting better, although my husband felt he was getting sicker. Finally on June 19 he went on Hospice Care, he said he had had enough and couldn’t continue. He was in to much pain.
@@marimarxuach7180 Thank you. Time is moving on. This summer I was able to visit our daughter, son in law and Grandchildren. They have lived in a different country for many years. My husband didn’t like to fly, so we never visited. I made myself a promise when he passed, that I would never keep a flight from keeping my family together. I had a wonderful time & am already preparing for next year. That want me to come back 😊. It just gives me so much hope for the future.
@@marshajones8958 Thank you, Marsha. God has been very good to me. I thank everyone that has prayed for me. We were married 37 years before he passed, so becoming a widow, is a new road for me.
I have MM, but with a twist, mine started out as weird skin sores, itching and the ER doctors would dismiss my sores and tell me I was causing them by scratching and to follow up with dermatology. Dermatology told me to stop itching. At one point I developed a staph infection and I knew something wasn’t right and kept sending my pcp photos and she then restricted my access to secure messaging. I developed a sore on my right foot and was told by the ER it was from my shoe! Finally I had a specific test done by a allergist and it confirmed MM
Similar to my late mum's story. She too had a weird skin scar that the dermatologist said was a skin infection but it never responded to treatment. My lesson from that experience: doctors should listen to their patients - if a patient insists that they are not feeling well, do not dismiss their feelings.
I was diagnosed with M/M 12/27/23 , I had no previous symptoms. Just in November I woke up and felt terrible couldn't even speak or a whisper; my spouse checked my BP and it was high. All day and evening my BP kept raising higher and higher . Went to emergency thru tested for a stroke; instead they found a mass on my skull
I’m being diagnosed as I watch this. My MM was held in my “feelings”, seems I needed mental health help, not an oncologist. I pushed until they wanted me gone from our clinic. I was correct, not my feelings!
That's where I'm at now. My doctor kept saying it was menopause and then refered my to a psychiatrist. She fired me when I asked too many questions and said if I didn't trust her I should go somewhere else. New doc took one look at my labs and referred me to an oncologist.
@@jennifersimpson3751 and if you have the Itamaraty to say that it’s not your feelings, your defiant and done know how to listen- to the people who aren’t actively listening. I hope they are listening to you more closely now.
I was so tired! No energy at all. I was overweight and smoking so I attributed it to that. I went on a diet and quit smoking. I lost thirty pounds and had not smoked in six months but I was getting to where I couldn’t make it from the parking lot to my desk without stopping at the restroom just so I could sit for a few minutes. Then I started getting compression fractures in my back. I didn’t know at the time it was actually fractures, I just know that I would get this sudden sharp excruciating pain that might happen from something like sneezing too hard. That was 2016. I had a stem cell transplant in 2017. I’m going into hospice now. I never smoked again and I’m still tired all the time.
Diagnosed with multiple myeloma in 2020. Treatment velcade with dexamethasone and the abnormal proteins became undetectable. Now they are back and are high. I was on revlemid velcade dexamethasone. Then stopped revlimed. Still on velcade and dexamethasone. Should i go back on revlimed?
I was diagnosed at the beginning of 2023 with multiple myeloma. Thank you for sharing. What is your foundation and how do I find through Google? I need a good support group that understands. Do you have a site with contact us field? Thank you. Martha Longfellow
I have WADENSTROM NON HODGKINS LYMPHOMA. I suspect I have MM now. I have rib pain . It feels like costrachronditis which I HAD BEFORE. I am attributing the rib pain to radiotherapy for my breast cancer. H aving been a nurse for over 30 years I knew why my oncologist ordered a skeletal x ray. I have anemia on iron and on VITAMIN B12. I am almost 100% sure I have MYELOMA.
So far, I am on my 3rd evening of watching this video and 14 hours of commercials PREVENTING ME from getting NOT EVEN 15 minutes of this ACTUAL STORY. MY 9th ATTEMPT to watch one of these and have to UNSUBSCRIBE due to ENDLESS HOURS of ads and I CANNOT MOVE MY ARMS WITHOUT 3XTREME PAIN to hit SKIP BUTTON. 🤬
So well said...couldn't agree more. Some people just jump at any opportunity to complain. Regardless of the ads this is a very informative and extremely helpful video for those going through the same horrible disease. Why can't people be thankful to others who give their time to do these videos for the sole purpose of sharing their difficult experiences to hopefully help others understand the complex symptoms, processes and treatments
Diagnosed at age 73 after surviving polio at the age of 3 yrs. Now 1 1/2 years into my 3 year treatment. Living well.
My dad was diagnosed with Multiple Myeloma on July 1st and he died the next day 💔 He didn't complain of pain and I seen him every day! My heart is absolutely broken...I don't understand why or how this happened...The Dr said it had spread everywhere absolutely everywhere! I feel so angry! We buried him Friday 😭 Thank you so much for sharing your story...I've been trying to figure out what this multiple myeloma is... 💔 I'm so happy you are doing so well...Bless you ❤️
so so sorry for your loss ❤
God bless so sorry for your loss ❤
I am so sorry for your loss ❤
Some people prefer to not burden others with their misfortune. Your dad suffered so that you all could live normally. That’s what I think.
That father did not want to burden his family - I agree. Bless him & his family.🙏🏼
My mom had multiple myeloma and her pain was in her leg and she was told the same thing. You have lesions all over your skeleton. she was devastated. I never saw my mom cry like that. She was scared and she even said I wish I didn't know. That was 18 years ago and there really wasnt a lot of choices for her. Glad to hear this woman had a better outcome.
I'm so sorry
I was diagnosed with MULTIPLE MYELOMA also in 2010. I had tandem autogolous stem cell transplants in 2011. I’ve been in remission since. It was a completely insane experience. My kids were 2,4 and six when I was diagnosed. I have terrible ptsd every year as I’m getting my yearly blood tests.
Ps….. I was 38….now I’m 50.
Samantha English where did you get the stem cell transplants done? So happy you’re doing well 😊
Wishing you continued good health.
Just got diagnosed with this bad MM and am only 34 .... Am losing it because the pain in my spine is insane, i can't walk nor sleep right
@@johnsonjohnson4811 I am so sad for you, I hope you can get some help with your condition X
I was diagnosed with SMM in 2020. FISH showed genetic markers for a high probability for progression to MM with poor prognosis. We are a higher-income household and I still have no idea how we'll be able to afford transplants and treatment even with insurance. At this point, I'm not sure I'm willing to rack up enormous amounts of debt to even attempt treatment with my markers. I think I'd prefer to enjoy as many healthy days as possible and give my family the gift of no debt to worry about and pay for long after I'm gone anyway. With all the wealth in this world, that any of us has to consider the financial ramifications of treatment in the slightest is very sad.
In almost every, if not every other developed country in the world this is not a choice you would have to make. Suggestion. India, has medical tech every bit as advanced as Western countries and I remember reading that stem cell transplants are around 20 or 30k or close to that amount.
I am sure you have good insurance. It pays for transplant.
We have a $12,000 deductible and then responsible for 20% of charges after that. Not great at all.
@@susannaa8401
@@Elizabeth_Parsons_327 We are lower Income household. My husband received a scholarship for ALL of his Treatments for 4 years. The ONLY thing we paid for were his every day drugs, not related to the Cancer. Thank the Lord, because he didn’t want me to be in Debt, when he was gone.
My 78 year old dad is in the process of being diagnosed with MM. They did the biopsy today, and it was excruciatingly painful for him. His kidneys are failing, and his back is crumbling. They said if he's diagnosed, he has about 3 months left to live.
My husband died from Multiple Myeloma 6/29/22, after 2 years of Treatment, every week. Every week he was told he was getting better, although my husband felt he was getting sicker. Finally on June 19 he went on Hospice Care, he said he had had enough and couldn’t continue. He was in to much pain.
Sorry for your loss. Pray that you find peace through this trial
My dad denied treatment for his cancer too. I am so sorry. Praying for you.
@@marimarxuach7180 Thank you. Time is moving on. This summer I was able to visit our daughter, son in law and Grandchildren. They have lived in a different country for many years. My husband didn’t like to fly, so we never visited. I made myself a promise when he passed, that I would never keep a flight from keeping my family together. I had a wonderful time & am already preparing for next year. That want me to come back 😊. It just gives me so much hope for the future.
@@marshajones8958 Thank you, Marsha.
God has been very good to me. I thank everyone that has prayed for me. We were married 37 years before he passed, so becoming a widow, is a new road for me.
@@marimarxuach7180 Thank you.
I have MM, but with a twist, mine started out as weird skin sores, itching and the ER doctors would dismiss my sores and tell me I was causing them by scratching and to follow up with dermatology. Dermatology told me to stop itching. At one point I developed a staph infection and I knew something wasn’t right and kept sending my pcp photos and she then restricted my access to secure messaging. I developed a sore on my right foot and was told by the ER it was from my shoe! Finally I had a specific test done by a allergist and it confirmed MM
Can you give us the name of the specific test please. And I'm glad finally a Dr took it seriously
Similar to my late mum's story. She too had a weird skin scar that the dermatologist said was a skin infection but it never responded to treatment. My lesson from that experience: doctors should listen to their patients - if a patient insists that they are not feeling well, do not dismiss their feelings.
I was diagnosed with M/M 12/27/23 , I had no previous symptoms. Just in November I woke up and felt terrible couldn't even speak or a whisper; my spouse checked my BP and it was high. All day and evening my BP kept raising higher and higher . Went to emergency thru tested for a stroke; instead they found a mass on my skull
You are an amazing person. What a truly unselfish and enviable attitude.
Thank you Jenny for all that you do for multiple myeloma. I watch your UA-cam channel Healthree and you are appreciated! 🌟
This is really interesting. Thank you for sharing. I am now being checked due to the fact that I gave the marker for myloma
This is so amazingly helpful and informative. Thank you so much for sharing this.
So glad to hear it was helpful! Thank you so much for watching!
I’m being diagnosed as I watch this. My MM was held in my “feelings”, seems I needed mental health help, not an oncologist. I pushed until they wanted me gone from our clinic. I was correct, not my feelings!
That's where I'm at now. My doctor kept saying it was menopause and then refered my to a psychiatrist. She fired me when I asked too many questions and said if I didn't trust her I should go somewhere else. New doc took one look at my labs and referred me to an oncologist.
@@jennifersimpson3751 and if you have the Itamaraty to say that it’s not your feelings, your defiant and done know how to listen- to the people who aren’t actively listening. I hope they are listening to you more closely now.
I've had rib pain in the hospital and pneumonia and was diagnosed with mgus.
I was so tired! No energy at all. I was overweight and smoking so I attributed it to that. I went on a diet and quit smoking. I lost thirty pounds and had not smoked in six months but I was getting to where I couldn’t make it from the parking lot to my desk without stopping at the restroom just so I could sit for a few minutes. Then I started getting compression fractures in my back. I didn’t know at the time it was actually fractures, I just know that I would get this sudden sharp excruciating pain that might happen from something like sneezing too hard. That was 2016. I had a stem cell transplant in 2017. I’m going into hospice now. I never smoked again and I’m still tired all the time.
I was diagnosed with multiple myeloma to and it’s in my ribs as well I’m doing chemo and radiation
In your ribs? Did the imaging show it at all?
my daughter ALL passed away. Felt like I let her down by trusting only one facility
Diagnosed with multiple myeloma in 2020. Treatment velcade with dexamethasone and the abnormal proteins became undetectable. Now they are back and are high. I was on revlemid velcade dexamethasone. Then stopped revlimed. Still on velcade and dexamethasone. Should i go back on revlimed?
Can I have MM if my immunoglobulins and light chains aren’t out of range?
My son had AML in 2019. He was 19 at the time.
I hope he's doing OK 💜
What was the thing in your virus that the pharma person told you? I can not hear it...
What did your blood work look like?
No holes in my bone. Crab is good. Calcium low. Kidneys look good.
My cousin had the same cancer and treatments still didn't make it. It kept coming back.
so sorry ❤
I mean what treatment have they done?
I was diagnosed at the beginning of 2023 with multiple myeloma. Thank you for sharing. What is your foundation and how do I find through Google? I need a good support group that understands. Do you have a site with contact us field? Thank you. Martha Longfellow
What were the transplants?
I had same question, but I'm assuming bone marrow?
Stem cell transplant
I think I missed something(?) What was transplanted?
I have WADENSTROM NON HODGKINS LYMPHOMA. I suspect I have MM now. I have rib pain . It feels like costrachronditis which I HAD BEFORE. I am attributing the rib pain to radiotherapy for my breast cancer. H aving been a nurse for over 30 years I knew why my oncologist ordered a skeletal x ray. I have anemia on iron and on VITAMIN B12. I am almost 100% sure I have MYELOMA.
So you can have Lymphoma and Myeloma have you ever had constant pain in your skull or neck
🙏🏾
🙏 ❤️ 🙏
❤👍
My doctor said after my body scan that my entire skeleton appeared to be motheaten.😢
🌺🙏✨✨
Do oncologists believe in metabolic therapy, seems to be out there
So far, I am on my 3rd evening of watching this video and 14 hours of commercials PREVENTING ME from getting NOT EVEN 15 minutes of this ACTUAL STORY. MY 9th ATTEMPT to watch one of these and have to UNSUBSCRIBE due to ENDLESS HOURS of ads and I CANNOT MOVE MY ARMS WITHOUT 3XTREME PAIN to hit SKIP BUTTON. 🤬
Most are monetized now, unfortunately and I agree, they are challenging. Unless we spend upwards of $5/month, sadly it is like this now. 😢
Watch it on your laptop/PC and make sure you have an ad blocker installed.
You're welcome
@bohochic2459you legit sound like a PEPSI COLA… MMMM REFRESHING!!! scary individual
@bohochic2459Who the flock MIND YOUR OWN BUSINESS I’m fed up with you holier than though hypocrites. You weren’t part of a solution for her.
So well said...couldn't agree more. Some people just jump at any opportunity to complain. Regardless of the ads this is a very informative and extremely helpful video for those going through the same horrible disease. Why can't people be thankful to others who give their time to do these videos for the sole purpose of sharing their difficult experiences to hopefully help others understand the complex symptoms, processes and treatments
"acclimated"😂 it's "acclimatised"
Both words have the same meaning.
@marioncannon9924
This was a very informative video, and that's the best comment you can come up with? Wow. You must be very proud of yourself.
Acclimated is used far more often. There is nothing to laugh about except your own ignorance of the English language.