My husband has Multiple Myeloma Del 17p. He was diagnosed in May of 2014. Many times, he was offered hospice, but we aren't ready to give up. He just celebrated his 64th birthday and we are going forth in prayer and faith.
my husband was dx with MM at the age of 52. he was high risk, stage 3. he was given 2-3 years. he too was a runner. GOD gave us 14 years. He fought long and hard. I miss my love every single day. May GOD also be with you.
I'm so sorry for your loss, but glad to hear you had more than a decade of time with your beloved. I pray I'll be able to see some grandchildren one day.
My mom was diagnosed with MM in 2013 at 71, she's now 82 and still fighting ❤ She's had an autologous stem cell transplant and many chemotherapy rounds and was in remission for a number of years until early this year so back to the regular chemo treatments. She's probably the most positive person I know and I think that along with her faith and modern medicine is how she's gotten this far. Wishing the best for all of you as you travel through this journey 🙏🏽❤
Sounds like your mom is doing great. My dad was dx'd with SMM in 2018 (t4;14) , progressed into active MM in 2019, did SCT and got about two years of remission before a biochemical relapse. Now he's on darzalex, pomalyst and dex and has been in remission for about a year. Fingers crossed for many more years.
I was told by a consultant that I was not strong enough to have a stem cell transplant. Not only did I prove him wrong and got my transplant, I also had the great pleasure of showing him photographs of me treking in the Scottish Highlands, just four months post-transplant. Ha, that showed him!!
I was diagnosed with MM at 58 quite by accident. My stem cell transplant was a success, but yikes it was rough. I hope you continue to do well Kenny...I love your positive attitude!
Thanks Kenny, I was diagnosed on Friday. It has been a rough weekend. Found through a Blood light chain test. I have a wife and 5 incredible kids. This is going to be rough in so many ways, but I am going to taclle it like you have. I have always been a dead head so I appreciate the reference to Throwing Bones.
Sorry to read this. I am going through testing now. I have blood test results but it’s tough to decipher exactly what they mean. I might read a test as bad, the Dr says it’s nothing to worry about. I just hit the light chain results yesterday & they’re worrying me to say the least. Waiting to hear from Dr now. I hope that things have gotten better for you in the month since you were diagnosed. Or that, minimally, things have gotten clearer & you see the path forward.
Ur wonderful, and wish U so much luck. Somebody above recommended faith and prayer.I'm Jewish, but I love the Lord's Prayer, and Christian Sermons. All the best to U and Ur family.🥀
Thanks! I understand what you mean about “self reading” tests, we really don’t know. I have gone through 4 rounds of Chemo, and have had another light chain blood test after the 3rd round. My light chain reading went from 139 to 80. I know that is going in the right direction and I am happy about that. I hope yours are good! I hope the Dr. explains it well! Heal Brother, that is want I want for both of us!
@@jimwalker221hello brother my mother also diagnosed with mm last week . They had done pet and bone marrow aspiration test . This news has devastasted us . Please can you tell me how you gone through the process and please give me some advice to stand still. I hope your okay I hope your disease heals very fast 🙏🙏🙏
Thank you for sharing your story . Same here have myeloma lots of pain in my bones I have 3 children the youngest is 8 so I have lots of responsibilities and work I am having to do only part time work because of pain and feeling tired all the time . My heart and prayers goes towards everyone who has this incurable disease , personally I tried everything that is natural and holistic including vitamin C intravenous for nearly3 years but didn’t work and I have been a very healthy women all my life don’t smoke or drink or eat junk
while getting the appropriate medical treatments, the best thing to do is to prepare the soul for the next stage by making peace with others and repenting of sins. i'll pray for you.
Thank you for sharing your story! I was diagnosed with MM last year (at 44 years old) and while I didn't have any bone damage, I did suffer some kidney damage. I went through the same treatment plan (including the stem cell transplant just this past February). I'm in awe at the progress we've made in treating this disease and I'm hopeful that you, me, and others can all look forward to living a long and fulfilling life thanks to the incredible things that these doctors and researchers are doing. Shout out to my transplant team at UF Shands in Gainesville - they are also on the cutting edge with these newer treatment options and I'm glad they are on my side in this fight!
@MrsTuckermp Multiple Myeloma can cause bone lesions and organ damage. We caught mine before it had done any damage to the bones, but the misfolded proteins had already damaged my kidneys.
My mum lived just one week after being diagnosed. All the symptomes came so fast...just a couple of months of back pain. Then in June it just exploded, and we had a new symptom almost every single day. And on July 8th she was gone.
Thank you for sharing your story to us , I’m going through the same way you went through, but I’m just starting treatment I’m in pain all my spine fractures. I hope I can go back into my normal life and I want to do for my son he is ten years old. 🙏❤
@@Nonaspoile Just want to encourage you to be positive. My husband was diagnosed in 2015 ,had a stem cell transplant in 2017 and although relapsed he has been on a maintenance dose of Lenalidamide for several years. He has suffered some broken ribs recently but still has a good quality of life. Stay active, eat healthy and lots of turmeric. Praying for you. 🙏💕
Thank you so much for sharing your story! I sincerely hope and pray your health continues in an upward trend, and you can beat the beast that is multiple myeloma! It's actually exciting and inspiring to hear about all the advancements in diagnosing and treating MM, a lot different from 22 years ago when my dear, oldest brother was diagnosed at 47 years young. He fought the good and honorable fight, and I am dedicated to doing what I can, to help in whatever minute way I can, to find a cure. I have joined a study specifically focused on that and feel hopeful one day soon that a cure is possible! God bless and keep you, fine sir, and everyone everywhere! 🕊️🙏❤️🕯️
I just got it. Started with pain in the ribs, then with a tumor in the spine that had to be operated on. Ultimately I have 7 tumors. I started radio and this week I started chimo. I am fighting
@@Sanity_FaireIt is going well. To date I have completed almost 3 immunotherapy stages and they harvested from my blood hematopoietic cells. I have one more immunotherapy to go and then I will have the transplant performed. So far it looks good, the bone marrow shows it is working.
Great story, Kenny. Thank you for taking time and making the effort to produce such an inspirational masterpiece. God bless you with health and happiness. ❤
Thanks Kenny, I was first diagnosed this year. I have been telling Dr.s for sometime that something was wrong with me. The first problem arrived while i was working in the construction field. I was lifting a 14ft beam and while i was fitting it in place I felt three pops in my spine. I told the job and they sent me to their doctor. Who told me i was fine and to go back to work. Which i did until i could no longer move without exptreme pain. I had a few buldges in my spine but they told me they shouldnt cause the pain i was describing. They released me not believing what i was saying and i have been unable to work properly ever since. Its been about 10 years. I just had some problems where I find it hard to move. Im in a new area and have a new hospital. They took some ct scans after i went in thinking i was having kidney stones.which ive had before. I had severe pain in my sides. My dr took a blood test and within the week got test results and looked at me saying, you have cancer, its called multiple myeloma. And put me right on treatment.
My partner just turned 35 and they say he has over an %80 chance of having myeloma based on blood testing and are waiting on the bone marrow biopsy. I'm terrified so I'm very grateful for these videos
I was diagnosed from one blood test. This test should be part of the ACA 100% covered preventive screenings! People w MM suffer broken bones including spinal fractures, kidney failure etc. before they get diagnosed.
What a story, what a person to endure this and be able to carry on, show positivity, and love for his family and kids I going to have some sort of treatment soon It's going to be at home with pills at least to start. The Doctor said there is no cure, just supress it. Really appreciate Kenny making the video and sharing. It means a lot to me. Best to U, Kenny, and Ur beautiful family.🥀
The treatment in incredibly difficult. At this moment if have had my second treatment within a period of 6 years with also the second stem cell transplant. And it took me well over 2 and a half years more or less recover from that treatment. But after 2 and a half years using a new medicine daily called "Leolinamide", my M-protiene levelis still not existend in my blood. At least it's not measurable.
Anyone know how to get tested for the MM gene? What is the test called? My dad passed away from MM 5 years after diagnosis at age 68. He kept telling me to get tested to see if I have the gene for it, but I was afraid. I am willing to get tested for it now.
My mom had this I’m currently experiencing is pain in ribs and back shoulder blade legs groin pelvic bone pain Should I get checked for this Sternum hurts too low back ankle I’m a mess 64 years old female
I have MM with skin sores and my boyfriend just emailed me and said my problem isn’t medical but in my head and I needed help and that he couldn’t help me
Not it’s not a rare cancer, it’s has been for so many years people used to die from it quickly but thanks to the research and treatment patients started to get a little better and leave a normal life .
My husband has Multiple Myeloma Del 17p. He was diagnosed in May of 2014. Many times, he was offered hospice, but we aren't ready to give up. He just celebrated his 64th birthday and we are going forth in prayer and faith.
Amen
Could you please tell me what was the treatment? Did he go through bone marrow transplant?
Do U mean, he went thru it so far without any treatment, or Chemotherapy❓God bless U and Ur husband🥀
my husband was dx with MM at the age of 52. he was high risk, stage 3. he was given 2-3 years. he too was a runner. GOD gave us 14 years. He fought long and hard. I miss my love every single day. May GOD also be with you.
I'm so sorry for your loss, but glad to hear you had more than a decade of time with your beloved. I pray I'll be able to see some grandchildren one day.
I have this disease and my heart goes out to us all who are suffering. My love and best wishes to everyone ❤xxx
Thank you very much. I am from mauritius
Thank you so much.🥀
Best wishes and A sense of daily strength
Many thanks, best wishes 😘 x
My mom was diagnosed with MM in 2013 at 71, she's now 82 and still fighting ❤ She's had an autologous stem cell transplant and many chemotherapy rounds and was in remission for a number of years until early this year so back to the regular chemo treatments. She's probably the most positive person I know and I think that along with her faith and modern medicine is how she's gotten this far. Wishing the best for all of you as you travel through this journey 🙏🏽❤
11 years, that's great--My father only lasted 2 years, back in the 90's, when they had no drugs to treat it
@@Whatt787 Thank you! I'm so sorry about your Dad 😔 I hope with more advancements eventually they'll discover an actual cure 🙏🏽❤️
@@hts1443 Looks like MM may become just a chronic disease instead of a fatal disease, lets hope so
Sounds like your mom is doing great. My dad was dx'd with SMM in 2018 (t4;14) , progressed into active MM in 2019, did SCT and got about two years of remission before a biochemical relapse. Now he's on darzalex, pomalyst and dex and has been in remission for about a year. Fingers crossed for many more years.
God bless U and Ur mother.🥀
I was told by a consultant that I was not strong enough to have a stem cell transplant. Not only did I prove him wrong and got my transplant, I also had the great pleasure of showing him photographs of me treking in the Scottish Highlands, just four months post-transplant. Ha, that showed him!!
Well done
Bravo, I hope you're still out there trekking 🙏🏽❤️
Bravo! Ypu are such a strong person. How did you overcome the horrible fatigue?
@@lindagreening7325 Yoga is very helpful , regular daily exercise with my four legged personal trainer called Maty🐕!
👍👍
I was diagnosed with MM at 58 quite by accident. My stem cell transplant was a success, but yikes it was rough. I hope you continue to do well Kenny...I love your positive attitude!
Is it completely cured ?
I have multiple myeloma pray for anyone that has this horrible disease😢
My Dad had MM and lived many years with it.
BMT in india oct 19. Greetings from mauritius
@@interrupted9671sure very comment now. More as à chronic health issue
My mom was diagnosed with MM she passed 9 months later. It completely destroyed her kidneys.
@@JenniferMoore-q6hI’m sorry to hear that. How long ago was that?
One of my favorite people lived with this disease for 22 years before passing away last year
So sorry. 😢😢😢
Awesome, 22 years!
Thanks Kenny, I was diagnosed on Friday. It has been a rough weekend. Found through a Blood light chain test. I have a wife and 5 incredible kids. This is going to be rough in so many ways, but I am going to taclle it like you have. I have always been a dead head so I appreciate the reference to Throwing Bones.
Sorry to read this. I am going through testing now. I have blood test results but it’s tough to decipher exactly what they mean. I might read a test as bad, the Dr says it’s nothing to worry about. I just hit the light chain results yesterday & they’re worrying me to say the least. Waiting to hear from Dr now.
I hope that things have gotten better for you in the month since you were diagnosed. Or that, minimally, things have gotten clearer & you see the path forward.
Ur wonderful, and wish U so much luck. Somebody above recommended faith and prayer.I'm Jewish, but I love the Lord's Prayer, and Christian Sermons. All the best to U and Ur family.🥀
Thanks! I understand what you mean about “self reading” tests, we really don’t know. I have gone through 4 rounds of Chemo, and have had another light chain blood test after the 3rd round. My light chain reading went from 139 to 80. I know that is going in the right direction and I am happy about that. I hope yours are good! I hope the Dr. explains it well! Heal Brother, that is want I want for both of us!
@@jimwalker221hello brother my mother also diagnosed with mm last week . They had done pet and bone marrow aspiration test . This news has devastasted us . Please can you tell me how you gone through the process and please give me some advice to stand still. I hope your okay I hope your disease heals very fast 🙏🙏🙏
Pls tell us about symptoms
I am on my 15th year or of the roller coaster ride known as plasma, cell cytoma or multiple myeloma I encourage all of you to gain faith
I have had it in my rib, shoulder femur jaw skull started in the back vertebrae now there again
@@drlarrylammers2829 did you do bone marrow biospy?
Yes, marvellous advice. O love the Lord's prayer.🥀
Thank you Kenny I was diagnosed with multiple myeloma this year. God bless you
Thank you for sharing your story . Same here have myeloma lots of pain in my bones I have 3 children the youngest is 8 so I have lots of responsibilities and work I am having to do only part time work because of pain and feeling tired all the time . My heart and prayers goes towards everyone who has this incurable disease , personally I tried everything that is natural and holistic including vitamin C intravenous for nearly3 years but didn’t work and I have been a very healthy women all my life don’t smoke or drink or eat junk
while getting the appropriate medical treatments, the best thing to do is to prepare the soul for the next stage by making peace with others and repenting of sins. i'll pray for you.
Keep being true to yourself amd being a supermom your kids will remember. I'm doing test now at 44 amd have three daughters 4,6, amd 8 😢
From one Cancer survivor to another, all the best to you and God bless you.
Thank you for sharing your story! I was diagnosed with MM last year (at 44 years old) and while I didn't have any bone damage, I did suffer some kidney damage. I went through the same treatment plan (including the stem cell transplant just this past February). I'm in awe at the progress we've made in treating this disease and I'm hopeful that you, me, and others can all look forward to living a long and fulfilling life thanks to the incredible things that these doctors and researchers are doing. Shout out to my transplant team at UF Shands in Gainesville - they are also on the cutting edge with these newer treatment options and I'm glad they are on my side in this fight!
What is the bone damage that happens? I’m sorry I’m learning
@MrsTuckermp Multiple Myeloma can cause bone lesions and organ damage. We caught mine before it had done any damage to the bones, but the misfolded proteins had already damaged my kidneys.
On what medications were you in before the stem cell transplant ? VRD ?
@RahulPal-mz4oj Yup! Velcade, Revlimid and Dex. I'm currently on 10mg Revlimid with low dose dex for maintenance
Did your kidney issues start first? Did you by chance have hypokalemia?
My brother went from Specialist to Specialist for 2 years. Diagnosed 2 weeks before his death - Multiple Myeloma
Sometimes it is hard to diagnose. Many practitioners think is a rheumatic disease. I was lucky to get diagnosed really fast.
Sad
We often get misdiagnosed for years....
My mum lived just one week after being diagnosed. All the symptomes came so fast...just a couple of months of back pain. Then in June it just exploded, and we had a new symptom almost every single day. And on July 8th she was gone.
sorry for your loss
Thank you for sharing your story to us , I’m going through the same way you went through, but I’m just starting treatment I’m in pain all my spine fractures. I hope I can go back into my normal life and I want to do for my son he is ten years old. 🙏❤
May I ask how we're you diagnosed? What test have u had done?
Don't worry, if this guy is still alive after 10 years, you will too. Just worry about getting fine one day at a time
And no worries.. you will be fine
Hi, I found out this cancer disease Multiple Myeloma by biopsy was done by my orthopedic when he was doing surgery kyphoplasty for my spinal .
@@Nonaspoile Just want to encourage you to be positive. My husband was diagnosed in 2015 ,had a stem cell transplant in 2017 and although relapsed he has been on a maintenance dose of Lenalidamide for several years. He has suffered some broken ribs recently but still has a good quality of life. Stay active, eat healthy and lots of turmeric. Praying for you. 🙏💕
Thank you for sharing this. My mom passed away from multiple myeloma 22 years ago.😢
Same with my father, and he was a running athlete like this guy
Kenny, I had the same treatment process. Had the CAR-T infusion process in Feb 23. Holding up so far.
I'm getting ready to have Car- T, is it rough?
I’ve just been diagnosed and this video has given me great hope. Thank you.
Diagnosed 3 years ago. Transplant Chemo Relimid for 2 years. So far in remission? It’s walking with a time bomb. Wish everyone well. Don’t give up.
Kenny! Im here w You brother, fighting same from Wa State much lov keep battling!
Thank you so much for sharing your story! I sincerely hope and pray your health continues in an upward trend, and you can beat the beast that is multiple myeloma!
It's actually exciting and inspiring to hear about all the advancements in diagnosing and treating MM, a lot different from 22 years ago when my dear, oldest brother was diagnosed at 47 years young. He fought the good and honorable fight, and I am dedicated to doing what I can, to help in whatever minute way I can, to find a cure. I have joined a study specifically focused on that and feel hopeful one day soon that a cure is possible!
God bless and keep you, fine sir, and everyone everywhere! 🕊️🙏❤️🕯️
I just got it. Started with pain in the ribs, then with a tumor in the spine that had to be operated on. Ultimately I have 7 tumors. I started radio and this week I started chimo. I am fighting
DAMN BRO CLOT SHOT INDUCED
How is it going?
@@Sanity_FaireIt is going well. To date I have completed almost 3 immunotherapy stages and they harvested from my blood hematopoietic cells. I have one more immunotherapy to go and then I will have the transplant performed. So far it looks good, the bone marrow shows it is working.
God no ! I am having Lower Rib pain at the moment
@@imviiku DONT WORRY
God bless everyone here.
Glad you are doing great!
This video has helped me so much. Thank you for posting.
Thank you for sharing your story Kenny.
All the best to you 🙏🙏
Great story, Kenny. Thank you for taking time and making the effort to produce such an inspirational masterpiece. God bless you with health and happiness. ❤
I was just diagnosed with mm, thanks for sharing with us.
Lost a beloved doctor to this. Not fair. Hang in there. ❤🙏👏🏻
God is great to heal you and we are praying for you and thinking of you too
Now I would love to be living there as it is so beautiful. Best of Luck Kenny
Thank you for posting!
Hell yeah, Kenny.
Great video, perspective, and hope for those enduring this sickness. Praying for you and any others enduring MM. 🙏🏼
Great video and inspirational gives me hope. I'm scheduled for Transplant in June 2023
Thanks Kenny, I was first diagnosed this year. I have been telling Dr.s for sometime that something was wrong with me. The first problem arrived while i was working in the construction field. I was lifting a 14ft beam and while i was fitting it in place I felt three pops in my spine. I told the job and they sent me to their doctor. Who told me i was fine and to go back to work. Which i did until i could no longer move without exptreme pain. I had a few buldges in my spine but they told me they shouldnt cause the pain i was describing. They released me not believing what i was saying and i have been unable to work properly ever since. Its been about 10 years. I just had some problems where I find it hard to move. Im in a new area and have a new hospital. They took some ct scans after i went in thinking i was having kidney stones.which ive had before. I had severe pain in my sides. My dr took a blood test and within the week got test results and looked at me saying, you have cancer, its called multiple myeloma. And put me right on treatment.
My partner just turned 35 and they say he has over an %80 chance of having myeloma based on blood testing and are waiting on the bone marrow biopsy. I'm terrified so I'm very grateful for these videos
Thank u for sharing, prayers 🙏 lifted for you
Amazing and very motivating Kenny!
Got the news 3 weeks ago as well! Your story and results give the spirit to fight this! John, Bangkok, Thailand.
Running helps me relax & concentrate & indeed helps with sleep. When one can have 8 hours of good sleep that makes one feel ready for the next day.
God is Great to heal you.
❤
Also, just FANTASTIC to make him sick in the first place. Evolve!
@@EarthFirstGoVeganvegan checks out
OMG I am trying to stop laughing as I keep waking up my hubby. Kris thank you for your wonderful sense of humor. You made my day better. ❤
My husband passed away from Multiple Myeloma 6/22.
I am so sorry for your loss. You’re in my prayers.
So sorry for your bereavement ..
I'm so sorry. I lost my birthday other in 2004. 💔💔💔
How old was he?My father was 81 but the cancer was better ,but i got the flu.
Prayers
My biggest concern is letting my family down
No dont think like that
Thank you for sharing. I'm in Asheville. Would love to connect and pick your brain. I believe I'm being diagnosed with this.
You look great.
I was diagnosed from one blood test. This test should be part of the ACA 100% covered preventive screenings! People w MM suffer broken bones including spinal fractures, kidney failure etc. before they get diagnosed.
Hey. What is the blood test called?
@@Mustacioara6 no idea
What a story, what a person to endure this and be able to carry on, show positivity, and love for his family and kids I going to have some sort of treatment soon It's going to be at home with pills at least to start. The Doctor said there is no cure, just supress it. Really appreciate Kenny making the video and sharing. It means a lot to me. Best to U, Kenny, and Ur beautiful family.🥀
God bless you!
Im startingchamotology Feb im from uk its my first time abnormal bloods
I can't imagine being told you have cancer.
It took a while to take it all in. 4 years ago.
What a boss!
Thank you Kenny for sharing your story. I wish you and your family all the best as you continue your journey.
REALLY GREAT NEWS ABOUT TREATMENT !!!
Thanks kenny, 😮
The treatment in incredibly difficult.
At this moment if have had my second treatment within a period of 6 years with also the second stem cell transplant.
And it took me well over 2 and a half years more or less recover from that treatment.
But after 2 and a half years using a new medicine daily called "Leolinamide", my M-protiene levelis still not existend in my blood.
At least it's not measurable.
Anyone know how to get tested for the MM gene? What is the test called?
My dad passed away from MM 5 years after diagnosis at age 68. He kept telling me to get tested to see if I have the gene for it, but I was afraid. I am willing to get tested for it now.
Test : Globulin and total protine ratio
Sometimes I think too much running /exercise is not good for the body..
Hope you are OK. 🙏
You can get A-Fib from too much running
Marathon runners are four times more likely to get A-Fib
Can be hard on the body, but as far as increasing the chances of cancer, I do not think so.
I have the gene for multiple myeloma lately i have had a load of back and arm pain im a little bit worried about going for another test
How do you know you have the gene for it?
How did you get tested for the gene? What is the test called?
My mom had this
I’m currently experiencing is pain in ribs and back shoulder blade legs groin pelvic bone pain
Should I get checked for this
Sternum hurts too low back ankle
I’m a mess 64 years old female
Yeah you should go get check please
Next week I will have stem sells collection. But I am going to postpone the transplant.
Supposedly guava leaves cures this cancer.
Do you know someone who tried guava leaves and the outcome?
Supposedly no
I have MM with skin sores and my boyfriend just emailed me and said my problem isn’t medical but in my head and I needed help and that he couldn’t help me
Is this a rare cancer?
Not it’s not a rare cancer, it’s has been for so many years people used to die from it quickly but thanks to the research and treatment patients started to get a little better and leave a normal life .
@@Nonaspoile were you having any symptoms?
@@crystalr9633 inflammation to all my joints. Stiffness and hurting .
@@Nonaspoile what tests confirm diagnosis?
@@bookbeingBlood tests. Pet scan, mri and cat scan.I had a growth on my spine and that's how they found it.
Why money rising? Does amerikas health security not pay for it?
❤❤❤🙏🙏🙏🙏