Diagnosed in 2020. MM presented itself as a lytic lesion on my right humerus. By that time, it had grown to where the bone broke one day, when I was reaching for some shampoo. Prepare yourself, because, although the treatments are amazingly better presently, you will have to endure a number of insults to your mind and body before you get on the other side of it. You will have to roll with the punches like you never have before. God bless you and strengthen you for this.
Litening to this is similar to listening to my oncologist but it gives me more time to clearly understand. This way, when i meet my Doc, i make more educated choices. These videos are invaluable. Thank you from the bottom of my heart.
I can relate to your story. I had my stem cell infection and was in remission for 100 days and was getting ready for my second stem cell infusion when things started to go wrong, and I developed testicle cancer in the left one and had to have it removed as well as some other problems. I'm still fighting my plasma cell leukaemia one year on. Hope you are doing well now Mike.
Dexamethasone has been a really nice aid to my knee arthritis and my back. It does keep me up at night but I’m willing to pay that price. Getting prepared for a transplant now. Thank you for a fine presentation.
I’ve just been diagnosed with mm. I’ve had large B cell lymphoma in 2014. It had been in remission. Now I’m stage two with heart disease also. I only have one main artery feeding my heart as a result the treatment is going very hard on me! I’m praying that I can hold up long enough to get through this.
@justincase1575 I cannot begin to understand what you're going through now - it sounds like you have lived experiences that will hopefully help you as you get through the current treatments. Sending you only the best thoughts/vibes. Thank you for sharing.
A couple of things I would like to have heard about; -what is done with back pain after remission? - does smoldering myeloma count as initial detection?
It is so important to have the date of these videos. the only thing I can see is that comments were 3 months ago....but ?? otherwise, thank you for all this information
I am 54. This year I had back pain and I was diagnosed with multiple myeloma. My health is good, my kidneys are working well, and there was no sign of disease in the bone marrow collected from the chest. A PET CT scan revealed 7 tumors. I will start radiotherapy tomorrow and chemotherapy later this month.
@@trudikirby1410When the doctor told me I had multiple myeloma, I googled it and found that the average life expectancy is 44 weeks. It took about 5 days to learn that it isn't so bad. Now I am getting treated with a new treatment that works well. So, I hope I will be able to beat it at least for the next 10 years.
@user-eg3nw1ms4b T9, T10, sacral bone, right femur, one left rib. The T10 needed surgery and then radiotherapy. The ones in the leg made me walk in a wheelchair, but after starting immunotherapy and radiotherapy, I was able to walk again as the tumors probably retroceded. I will know more when the radiotherapy will end and I will get a CT to evaluate it.
Holistic approaches shorten your life so drastically for MM. I don’t know that I’d even try that at this point if you’re wanting to live. Maybe future treatments will allow this, but it is cancer nonetheless.
I understand your views to big pharma toxic drugs as I have been on the toxic side and have been on Ayurvedic and Chinese herbs for other diseases. With that said, these herbs don't act as fast or as good as big pharma drugs. I have hypothyroidism, vasculitis, celiac disease and vitiligo. I have so far avoided pharma drugs for the vasculitis for 2 years, but pharma drugs are coming as I can't seem to get on top of the inflammation. I researched the living daylights out of each pharma drug and found the natural version backed by science, but the natural herbs still can't act as fast or act at all in the same way. There are no natural herbs that completely kill mm that I have found. You can avoid inflammatory foods and keep your vitamin and minerals in check to help with pharma drugs. Even with mm, I found ayurvedic treatments that say only use along side conventional treatments.
Holistic approach is modern medicine treatment plus good diet, Phisio, psychological help. Anti inflammatory lifestyle as much as possible. But easier said than done.
This is exactly what my husband was diagnosed with in January 2020 but he has the high risk Gene. Thank you for sharing. Is your MSpike up? My husband’s is back up to 0.6 even though he’s on bi weekly Velcade. I just started listening so I’ll probably learn a lot! ❤
Hello ma'am. It's sad to hear that your husband diagnosed with mm. I hope he is good. Can I know in which stage did he get mm. Because my mother also diagnosed with mm . I am so worried about it.
New subscriber, I follow you on Facebook also. I am a lambda light chain myeloma patient since 2012. I am going through testing right now as it seems to be coming back
Great video. Newly diagnosed (struggling to get a Dr who specializes in myeloma with my insurance who feel any old oncologist is fine and dandy) and this covered a lot of my questions. Really wish the Fast Car T info wasn't out of China where cutting corners to ensure a profit are ingrained in society. Wish there was a discussion on Car T vs stem cell for newly diagnosed. Seems some feel that is the future.
The Leukemia and Lymphoma Society has a great resource called the Clinical Trial Support Center → www.lls.org/support-resources/clinical-trial-support-center-ctsc
I have just been diagnosed with MM. I live alone and have no caregiver. I'm not sure how I am going to get through the treatment, making doctors appointments, etc. I'm thinking I may be better off just giving up and going into hospice. I am 66 years old. God help me.
There is help. There are people who will help. Ask you might be surprised . It is difficult to go through this by yourself. My brother would drive me to my appointments and pick me up but he hates hospital and never stayed. There were the nurses etc.
Im only on revlimid for my MM. After my stem cell transplant at age 50. I'm 54 now. Is there any way to bring down my kappa and lambda numbers? Just read a study by an italian and German doctors. They mixed probiotics with other drugs and the case study brought numbers down.
Yes, there are alternative things you can do to help bring down your kappa/lambda numbers...one of which is fasting and a change in diet, which excludes sugar/white & wheat flour. Look into eating a more organic plant-based diet (not vegan, just heavily plant-based). Check out Dr. Berg's channel, Dr. Thomas Lodi's channel and look into Valter Longo's studies on fasting. Research the benefits of Essaic Tea for blood cancers and soursop tea. Eating clean is crucial when you have any blood cancer. God bless 🙏
Dr. Urvi Shah at MSK is running some diet trials in patients with MGUS. Her research on plant based diets and microbiome provides more clues on how to optimize diet.
I am 41. Got diagnosed with MGUS 2.5 years ago. Currently my symptoms are quite alarmingn. Blood test are worsening and have ongoing back pain. Is myeloma always visible on x-rays? My hematologist sent me only for the chest xray for my rib / pack pain.
If you are suspecting full blown MM please get an SPEP, SFLC, and SIFE done as soon as possible. These along with comprehensive blood chemistry panel will give you a definitive answer if a bone marrow biopsy is not easy to obtain. It is not easy to diagnose MM from imaging alone but usually an MRI, CT and PET scans are needed to detect clear lesions.
My mum has MGUS & her numbers have come back bad. She’s had MGUS for 7 years & her blood tests have come back bad. Her heart isn’t good & she might need stents now too (Coronary Artery Disease)She’s worried that if she has stents then she might not be able to have treatment for myeloma later on. For example Plasma treatment, etc Is this correct? I think she should have full scans & maybe check bone marrow first?
I have WADENSTROM NONE HODGKINS LYMPHOMA. I also had a lumpectomy for breast cancer. This is rare. Now my doctor suspects MULTIPLE MYELOMA. She did not tell me but I put 2 and 2 together being a retired nurse. I have one light chain elevated , protein up . VITAMIN B 12 LOW , IGA up but that is also up in WADENSTROM. I have rib pain. My CA breast doctor ssid it could be from the radiotherapy. My family doctor said I was premature in diagnosing my self. I said I am realistic. I am having skeletal xrays in JANUARY. How many cancers can one person have. .
I too grew up in the age of "the Doctor Knows Best". Two years ago I began taking control of my health with Diabetes. I handle it as I think BEST. 6 months ago my husband was diagnosed with Kidney failure....several days later Multiple Myeloma. It has been rough and I had to give up any control of him and trust that the doctors know best.
Linda, we are so sorry to hear what you've been through. But it's so empowering to hear that you've put your health at the forefront. Please let us know if there are any topics that would be helpful for us to cover. Thank so much for watching!
Doctor does NOT know best...in fact they are some of the most misinformed and tunnel visioned humans on this planet. Most of them anyway and this has become increasingly more controlled since Fauci came in board. They are controlled by the CDC who will yank their license and discredit them if they practice outside the CDV guidelines which are made to keep people sick and paying for medical care and pharmaceuticals.
Love this video - so much great information in a friendly format. BUT … the background music in the first part is very sad and depressing. Needs more upbeat, positive music. If someone has just been diagnosed, they are probably emotionally fragile and music can influence their emotional state.
My mother is 64 year she diagnosed MM now undergoing treatment bt having weakness loose motion after taking weKly injection her micro billuglunin level is 10.5 mg/l is this really high value ? How long will my mother survive pls suggest she doesnt have any other illness like BP diabetes will my mother be able to fine with treatment pls advice someone😢 her hemoglobing also drops 3 time to 7 and infused blood 3 times pls advice someone what should we do
@@mahipanchal2650 Always try to think something different from doctor Because even doctor has also no clear treatment to this disease Always protect your mother from any kind of infection like Fever is much dangerous Less medicine better results
Diagnosed in 2020. MM presented itself as a lytic lesion on my right humerus. By that time, it had grown to where the bone broke one day, when I was reaching for some shampoo. Prepare yourself, because, although the treatments are amazingly better presently, you will have to endure a number of insults to your mind and body before you get on the other side of it. You will have to roll with the punches like you never have before. God bless you and strengthen you for this.
Did u survive?
This female doctor is outstanding
I got my Diagnoses just a few days ago. This story inspires me. Thanks for sharing your story.
Best wishes to you.
What did u do for treatment?
Litening to this is similar to listening to my oncologist but it gives me more time to clearly understand. This way, when i meet my Doc, i make more educated choices. These videos are invaluable. Thank you from the bottom of my heart.
I can relate to your story. I had my stem cell infection and was in remission for 100 days and was getting ready for my second stem cell infusion when things started to go wrong, and I developed testicle cancer in the left one and had to have it removed as well as some other problems. I'm still fighting my plasma cell leukaemia one year on. Hope you are doing well now Mike.
Dr. Costello is way ahead of the game
Good Evening
I was diagnosed with Myeloma Dec 2021. Eight month post stem cell transplant.
Thank you for sharing
Thank you for watching! Is there anything that would be helpful for us to cover in the future?
Using CarT vs Stem cell and also using CarT in the first line of treatment for high risk for newly diagnosed (possibly after their induction)?
Dexamethasone has been a really nice aid to my knee arthritis and my back. It does keep me up at night but I’m willing to pay that price. Getting prepared for a transplant now. Thank you for a fine presentation.
I’ve just been diagnosed with mm. I’ve had large B cell lymphoma in 2014. It had been in remission. Now I’m stage two with heart disease also. I only have one main artery feeding my heart as a result the treatment is going very hard on me! I’m praying that I can hold up long enough to get through this.
@justincase1575 I cannot begin to understand what you're going through now - it sounds like you have lived experiences that will hopefully help you as you get through the current treatments. Sending you only the best thoughts/vibes. Thank you for sharing.
Praying for you 🙏
This cancer took my dad's life. He didn't live very long once diagnosed.
A couple of things I would like to have heard about;
-what is done with back pain after remission?
- does smoldering myeloma count as initial detection?
Smoldering myeloma counts as initial detection
It is so important to have the date of these videos. the only thing I can see is that comments were 3 months ago....but ?? otherwise, thank you for all this information
Thank you for this video. This is a really informative video!
I am 54. This year I had back pain and I was diagnosed with multiple myeloma. My health is good, my kidneys are working well, and there was no sign of disease in the bone marrow collected from the chest. A PET CT scan revealed 7 tumors. I will start radiotherapy tomorrow and chemotherapy later this month.
Good luck on your journey. I hope you have a support system and a myeloma specialist oncologist.
@@sandh6973Yes, I do, I am lucky, I guess.
That must be a shock after you were probably thinking you were on the mend. WOW
@@trudikirby1410When the doctor told me I had multiple myeloma, I googled it and found that the average life expectancy is 44 weeks. It took about 5 days to learn that it isn't so bad. Now I am getting treated with a new treatment that works well. So, I hope I will be able to beat it at least for the next 10 years.
@user-eg3nw1ms4b T9, T10, sacral bone, right femur, one left rib. The T10 needed surgery and then radiotherapy. The ones in the leg made me walk in a wheelchair, but after starting immunotherapy and radiotherapy, I was able to walk again as the tumors probably retroceded. I will know more when the radiotherapy will end and I will get a CT to evaluate it.
This was very helpful
Same year I was diagnosed with multiple myeloma
does anyone know of an holistic approach to myeloma therapy?
Holistic approaches shorten your life so drastically for MM. I don’t know that I’d even try that at this point if you’re wanting to live. Maybe future treatments will allow this, but it is cancer nonetheless.
I understand your views to big pharma toxic drugs as I have been on the toxic side and have been on Ayurvedic and Chinese herbs for other diseases. With that said, these herbs don't act as fast or as good as big pharma drugs. I have hypothyroidism, vasculitis, celiac disease and vitiligo. I have so far avoided pharma drugs for the vasculitis for 2 years, but pharma drugs are coming as I can't seem to get on top of the inflammation. I researched the living daylights out of each pharma drug and found the natural version backed by science, but the natural herbs still can't act as fast or act at all in the same way. There are no natural herbs that completely kill mm that I have found. You can avoid inflammatory foods and keep your vitamin and minerals in check to help with pharma drugs. Even with mm, I found ayurvedic treatments that say only use along side conventional treatments.
Holistic approach is modern medicine treatment plus good diet, Phisio, psychological help. Anti inflammatory lifestyle as much as possible. But easier said than done.
This is exactly what my husband was diagnosed with in January 2020 but he has the high risk Gene. Thank you for sharing. Is your MSpike up? My husband’s is back up to 0.6 even though he’s on bi weekly Velcade.
I just started listening so I’ll probably learn a lot! ❤
Hello ma'am. It's sad to hear that your husband diagnosed with mm. I hope he is good. Can I know in which stage did he get mm. Because my mother also diagnosed with mm . I am so worried about it.
New subscriber, I follow you on Facebook also. I am a lambda light chain myeloma patient since 2012. I am going through testing right now as it seems to be coming back
Thank you so much for watching! Please let us know if there are topics that would be helpful for us to cover!
Iga or igg?
Great video. Newly diagnosed (struggling to get a Dr who specializes in myeloma with my insurance who feel any old oncologist is fine and dandy) and this covered a lot of my questions. Really wish the Fast Car T info wasn't out of China where cutting corners to ensure a profit are ingrained in society. Wish there was a discussion on Car T vs stem cell for newly diagnosed. Seems some feel that is the future.
Thank you so much for this feedback! We will look into that discussion idea. -Stephanie
Very educationa!! Thank you.
Seriously, the US worships profits over patient care.
Thank you! Can you tell me what would be the best resource for researching open trials?
The Leukemia and Lymphoma Society has a great resource called the Clinical Trial Support Center → www.lls.org/support-resources/clinical-trial-support-center-ctsc
I have just been diagnosed with MM. I live alone and have no caregiver. I'm not sure how I am going to get through the treatment, making doctors appointments, etc. I'm thinking I may be better off just giving up and going into hospice. I am 66 years old. God help me.
What state are you in?
There is help. There are people who will help. Ask you might be surprised . It is difficult to go through this by yourself. My brother would drive me to my appointments and pick me up but he hates hospital and never stayed. There were the nurses etc.
Im only on revlimid for my MM. After my stem cell transplant at age 50. I'm 54 now. Is there any way to bring down my kappa and lambda numbers? Just read a study by an italian and German doctors. They mixed probiotics with other drugs and the case study brought numbers down.
Yes, there are alternative things you can do to help bring down your kappa/lambda numbers...one of which is fasting and a change in diet, which excludes sugar/white & wheat flour. Look into eating a more organic plant-based diet (not vegan, just heavily plant-based). Check out Dr. Berg's channel, Dr. Thomas Lodi's channel and look into Valter Longo's studies on fasting. Research the benefits of Essaic Tea for blood cancers and soursop tea. Eating clean is crucial when you have any blood cancer. God bless 🙏
Dr. Urvi Shah at MSK is running some diet trials in patients with MGUS. Her research on plant based diets and microbiome provides more clues on how to optimize diet.
I am 41. Got diagnosed with MGUS 2.5 years ago. Currently my symptoms are quite alarmingn. Blood test are worsening and have ongoing back pain. Is myeloma always visible on x-rays? My hematologist sent me only for the chest xray for my rib / pack pain.
If you are suspecting full blown MM please get an SPEP, SFLC, and SIFE done as soon as possible. These along with comprehensive blood chemistry panel will give you a definitive answer if a bone marrow biopsy is not easy to obtain. It is not easy to diagnose MM from imaging alone but usually an MRI, CT and PET scans are needed to detect clear lesions.
My mum has MGUS & her numbers have come back bad. She’s had MGUS for 7 years & her blood tests have come back bad. Her heart isn’t good & she might need stents now too (Coronary Artery Disease)She’s worried that if she has stents then she might not be able to have treatment for myeloma later on. For example Plasma treatment, etc Is this correct? I think she should have full scans & maybe check bone marrow first?
Does Medicare cover these drug treatments? If so, for how long?
What are the side effects??
I have WADENSTROM NONE HODGKINS LYMPHOMA. I also had a lumpectomy for breast cancer. This is rare. Now my doctor suspects MULTIPLE MYELOMA. She did not tell me but I put 2 and 2 together being a retired nurse. I have one light chain elevated , protein up . VITAMIN B 12 LOW , IGA up but that is also up in WADENSTROM. I have rib pain. My CA breast doctor ssid it could be from the radiotherapy. My family doctor said I was premature in diagnosing my self. I said I am realistic. I am having skeletal xrays in JANUARY. How many cancers can one person have.
.
God bless. Looks like I maybe new to the club.
I too grew up in the age of "the Doctor Knows Best". Two years ago I began taking control of my health with Diabetes. I handle it as I think BEST.
6 months ago my husband was diagnosed with Kidney failure....several days later Multiple Myeloma. It has been rough and I had to give up any control of him and trust that the doctors know best.
Linda, we are so sorry to hear what you've been through. But it's so empowering to hear that you've put your health at the forefront. Please let us know if there are any topics that would be helpful for us to cover. Thank so much for watching!
A year ago I was told I had 3rd stage kidney failure. A month later I was diagnosed with multiple myeloma.........same as you
Doctor does NOT know best...in fact they are some of the most misinformed and tunnel visioned humans on this planet. Most of them anyway and this has become increasingly more controlled since Fauci came in board. They are controlled by the CDC who will yank their license and discredit them if they practice outside the CDV guidelines which are made to keep people sick and paying for medical care and pharmaceuticals.
Well done 👏 you
Thanks Ma'am
Love this video - so much great information in a friendly format. BUT … the background music in the first part is very sad and depressing. Needs more upbeat, positive music. If someone has just been diagnosed, they are probably emotionally fragile and music can influence their emotional state.
@mikejuliefinney This is a great point. Thank you - will take back to the team. -Stephanie
I have it now too
I am from INDIA
My mother has been diagnosed with multiple myeloma
Please share some information more
Have u started treatment?
@@yaashji
Yes in Hyderabad
My mother is 64 year she diagnosed MM now undergoing treatment bt having weakness loose motion after taking weKly injection her micro billuglunin level is 10.5 mg/l is this really high value ? How long will my mother survive pls suggest she doesnt have any other illness like BP diabetes will my mother be able to fine with treatment pls advice someone😢 her hemoglobing also drops 3 time to 7 and infused blood 3 times pls advice someone what should we do
@@mahipanchal2650
Always try to think something different from doctor
Because even doctor has also no clear treatment to this disease
Always protect your mother from any kind of infection like
Fever is much dangerous
Less medicine better results
Hello same my mother also diagnosed with mm. Can I know in which stage your mother got mm.
What type of myeloma do you have.
seems like you would want to tell everyone what you are taking for multiple myeloma now for 15 years .is it a secret .
are you wanting money to tell what you are doing for the last 15 years .please help folks are wanting to know to live .
so what has been working for you for all these years since stem cell didn't work.
I will like to know too,please.
Hi Don, sorry for the belated reply! Cindy went through revlimid+dex back in 2008, autologous stem cell transplant, and then responded to triplets.
Stem cell transplant didn't work isn't it
Emm. Yea id like to no too...😮sounds like a bullster
I'm guessing none of these patients have "enjoyed" any of these dangerous drugs.
No one enjoys the treatment… please lady, change your words next time you make video