Thanks for this. It really emphasises how varied is the reaction to MM. I was diagnosed at almost exactly the same time (in the UK), I am also high risk (p17-del), had tandem transplants in Dec 20 and Apr 21, and have been on Revlimid ever since with very low paraprotein levels living a pretty normal life. I think the biggest lesson is don't despair. There are many treatments and new ones are appearing all the time. As one of our support group said - think of it as like diabetes - incurable and an ongoing burden but not a terminal disease.
Julie, I was also diagnosed in 2020 with Multiple Myeloma. Like you, my symptoms weren't typical. I also had a stem cell transplant. I had a pretty rough time with it, but I did achieve remission. I'm on maintenance chemo now & living for the moment. Good luck & God bless!
I spent 6 weeks at Vanderbilt receiving my Transplant in March 2021. Two week’s test’s, The third and fourth week’s they did the transplant and recover which was honestly nothing, no pain or Side effects. But week 5 th and 6 we’re the two most miserable day’s of My life. Could hardly tie my shoes without feeling fatigued, I told my wife if this is how I’m going to feel the rest of my life it’s not worth living. Eventually I got better, it took two years to fill like myself today. The MM has been in remission for a year now but with that I know I’m not the same person I was before being diagnosed. My attitude during all of this remains the same, it is what us is, I don’t waist time worrying about it.
Please do a series on head, neck and throat cancers. Many of us are devastated by this, but I cannot find this on any of your “patient stories”. It has the most devastating affects for many of us.
Good idea. I was diagnosed with throat cancer but it turned out to be enlarged tonsils. My girlfriend and I prayed this way: "Thank you for my healing...."
Julie story is great. I see how much free information is out there for multiple myeloma patients. You don't have to be wealthy to access much of😢 this information. You just need to be determined to do your research. I think for Julie, the lady in this story asking questions and finding answers is helpful. My 49 year old daughter has recently been diagnosed with smoldering multiple myeloma. She is going in July for a stem cell transplant. We are praying for a good outcome. I appreciate Julie and other Myeloma patients for sharing their stories. It helps other multiple Myeloma patients to draw strength from others and to know they are not along.
Bone Marrow biopsy is ouch. I remember going to my hematologist with my hubby and found out I had multiple myeloma. Remember asking what’s next and my doctor said bone marrow biopsy so right than and there she did the biopsy (had no idea what it entailed of which I was grateful). After the biopsy I went to a conference, with coworkers along with the big ole bandages on my hip. Boy that was a difficult day. My course of action was similar to yours with a small exception. I was extremely lucky as I have an identical twin sister (mirror twin which our DNA were identical), this made it possible to use her stem cells versus me. Three months after the first one they did the tandem transplant with an unrelated donor as none of my other 7 siblings where not a march. After the second transplant, I was accepted to a clinical trial, the trial just happened to be my doctors trial she was running on post transplant treatment. My journey started in 2008 at the age of 43 and as of my last follow up earlier the year I remain undetectable. Take care and sending positive energy your way!
I accompanied my grandma to her bone marrow biopsy. I was horrified at how barbaric it was. I've often wondered why they don't offer anesthesia for that procedure.
Thanks Julie for sharing your story! Your tips and example of self advocacy and education during this ordeal are inspiring! Stephanie: it’s good to see you again!
Stephanie Thank you for sharing these Patient Stories with us Julia,you are a remarkable Lady and spoke with incredible intelligence Well done on your recovery 😊
My dentist sent me to a hematologist after identifying a lump on my right jaw in Dec ‘19. I’ve been on an almost identical treatment program and path you’ve gone through. I just finished my CAR-T infusion in February. In August ‘23 my Lamda, blood platelets, etc. are normal. I watched your video because (MM Deafness) flagged your interview. I lost about 50% hearing in both ears. On the Miracle Ear plan now. The CAR-T treatment was milder than the SCT. Good luck on future treatment.
It's always interesting to hear the experiences of others. I was diagnosed in 2014 and have generally reacted well to treatment besides one episode (won't detail here). The most uncomfortable investigation has been having a marrow biopsy taken from my hip. I live in London and fortunately my consultant is one of the most respected in the UK. I still enjoy a good quality of life. As new treatments are becoming available all the time is good to remain optimistic!
Thank you for sharing your story. I have cll and 5 years ago was treated. My oncologist actually phoned 3 drs at John Hopkins to mutually decide on best chemo treatment for me, so I never went for other opinions. My treatment is now wearing off and looks like I'll get more treatments again. Best of luck that you remain cancer free.❤
My aunt passed away on Dec. 11, 2021 from multiple myeloma. She was sick for months but doctors did not know what was wrong with her. She was finally diagnosed with multiple myeloma but it was too late. She passed away a few days later. Barbara Hoover R.I.P. 🙏
I am going in this direction. The only thing that scares me is the pain. If I can buy 5 more years I will be almost 80 so at 74 I am not going for any of that painful treatment. I have all my last wishes taken care of and they are not going to cut,burn and poison me and still die after all that. Best wishes to all of you and to each his own and may God bless each and every one of you.
Thank you for sharing your story, prayers for remission for you! For those seeking information about multiple myeloma, please *also* contact the MMRF (Multiple Myeloma Research Foundation) and the IMF (International Myeloma Foundation). They both have a wealth of information and help for patients and caregivers. As Julie acknowledged, she said she was very lucky to be in the Tri-state area and have *access* to (not direct contact with) some of the top doctors. Granted, we don't all have that accessibility, but help *IS* out there. You have to be your own advocate, be proactive, positive, and stay informed. Godspeed to all dealing with any health issues, especially multiple myeloma.🕊️🙏❤️🕯️
I did a lot of research speaking to the nurse navigator at the MMRF and Info Line at IMF asking who are the top Myeloma Specialists around the country, also searching online. I didn’t have any special contacts at any of the cancer institutions. I called and asked for appointments.
@@JulieC-hb6gs That is what I was trying to get out there after listening to your story to all the negative comments. You did your own research and were/are proactive, positive and resilient. I admire you for being your own advocate! I never meant to imply you had inside contacts or special help. I just know it takes diligence, perseverance, and sometimes tenacity to be your own advocate and find what works best for you. Wishing you, and everyone going through a health issue journey, or any difficulties, healing and light! 🕊️🙏❤️🕯️
@@Legittoquit1 What on earth makes you think I am entitled? Far from it. I wish everyone nothing but the best, no matter who you are. That is a hurtful comment, you don't even know me at all. 🙏🕊️
@@ElephantsRock19 well your so beautiful and well spoken and you dress like a model . It appears your above . Apologies if I’m confusing myself. Peace and Heath.
Thank you so much for sharing your story! I love that you took a course in order to better understand research papers and studies! Which course was it? Did it help? I'm lucky to have a bio background, but my mom, who doesn't, wants to improve her study literacy as she does her own research into my disease. So being able to recommend that course to her would be hugely helpful 😍
Please, please, please add high dose bioavailable curcumin 8g daily my sister has had MM for 13 years and after everything stop working she has been using this with great results......don't delay please!!!!!
@wendydussault my mom has MM (diagnosed early 2013), she’s been in remission for the last 10 years but it’s starting to relapse. How has curcumin work for your sister? Improvement of the protein reading In her blood work? Please ask her for me. Thank you so much.
This is odd. Ever since 2016 I developed water aversion and food aversions. I still go through those aversions. I also had and have extreme fatigue. I used to eat anything and everything but not anymore. I’ll keep my notes before me now that I see you had food aversions too.
I was diagnosed January 2022. Had no symptoms. Routine bloodwork revealed it. Had bone marrow biopsy and Oncologist said its not bad enough for treatment. Going for bloodwork every 2 to 3 months to stay up on it. I see each year my platelets, red and white blood cells have dropped. Only symptoms so far is I get real tired and weak at times for no reason it seems.
As Julie said at 8:15, everyone's myeloma is different so there is no single answer to this question. I believe that Revlimid has been the most widely used maintenance drug but you should have an MM specialist who can advise in your case. There is recent, increasing use of multiple drugs for maintenance.
@@crystalr9633 I think they saw some abnormal formations in my lambda free light chains among probably other things. By then they had me come back a couple of times for more labs to rule out other things.
I am happy for her results, but in the back of my mind, I surmise that she is privileged and had available medical help that most of our population does not. I do wish her all the best.
Maybe they just have good insurance. She mentioned Hackensack which is NJ right outside of NYC and has great medical facilities. Not sure it’s “privilege” as much as living in the Tri-State NYC area.
Privileged? Cynical, much. Such a random, thoughtless statement. That kind of mindset, is an ailment in itself. But, rejoice! You can actually heal yourself of this affliction! I’m afraid you’ll need to begin with ending your pity party. It likely won’t be easy,for you to end your party. But do yourself and the rest of humanity a favor. Start with the wonderful fact, that you are alive. Try challenging yourself to acknowledge, that you can control how you perceive life. All the elements that comprise life. I’ll go out on a limb here and guess, that you are not the one sole individual, who has been dealt the worst hand, ever dealt. Really, consider a heart and attitude adjustment. You don’t need to live in a supposedly, “privileged” area, to begin your journey to change. It’s a challenging assignment, the choice is yours. If you can read, you’re good to go.
My health insurance covered the consultations. I had several of the consultations via telemedicine appointments. At that time, everyone was on “lockdown” more or less and doctors around the country were offering telemedicine appointments.
I didn't feel any pain with my biopsy. They had put an IV in and said they were giving me "something to make me not mind as much" which turned out to be fentanyl
Thanks for this. It really emphasises how varied is the reaction to MM. I was diagnosed at almost exactly the same time (in the UK), I am also high risk (p17-del), had tandem transplants in Dec 20 and Apr 21, and have been on Revlimid ever since with very low paraprotein levels living a pretty normal life. I think the biggest lesson is don't despair. There are many treatments and new ones are appearing all the time. As one of our support group said - think of it as like diabetes - incurable and an ongoing burden but not a terminal disease.
Julie, I was also diagnosed in 2020 with Multiple Myeloma. Like you, my symptoms weren't typical. I also had a stem cell transplant. I had a pretty rough time with it, but I did achieve remission. I'm on maintenance chemo now & living for the moment. Good luck & God bless!
I spent 6 weeks at Vanderbilt receiving my Transplant in March 2021. Two week’s test’s, The third and fourth week’s they did the transplant and recover which was honestly nothing, no pain or Side effects. But week 5 th and 6 we’re the two most miserable day’s of My life. Could hardly tie my shoes without feeling fatigued, I told my wife if this is how I’m going to feel the rest of my life it’s not worth living. Eventually I got better, it took two years to fill like myself today. The MM has been in remission for a year now but with that I know I’m not the same person I was before being diagnosed. My attitude during all of this remains the same, it is what us is, I don’t waist time worrying about it.
Please do a series on head, neck and throat cancers. Many of us are devastated by this, but I cannot find this on any of your “patient stories”. It has the most devastating affects for many of us.
Good idea. I was diagnosed with throat cancer but it turned out to be enlarged tonsils. My girlfriend and I prayed this way: "Thank you for my healing...."
@@marywilliams9858wow lucky girl 💙 4:01
Julie story is great. I see how much free information is out there for multiple myeloma patients. You don't have to be wealthy to access much of😢 this information. You just need to be determined to do your research. I think for Julie, the lady in this story asking questions and finding answers is helpful. My 49 year old daughter has recently been diagnosed with smoldering multiple myeloma. She is going in July for a stem cell transplant. We are praying for a good outcome. I appreciate Julie and other Myeloma patients for sharing their stories. It helps other multiple Myeloma patients to draw strength from others and to know they are not along.
An intelligent woman who takes care of herself. You go girl. I’m proud of you.
Bone Marrow biopsy is ouch. I remember going to my hematologist with my hubby and found out I had multiple myeloma. Remember asking what’s next and my doctor said bone marrow biopsy so right than and there she did the biopsy (had no idea what it entailed of which I was grateful). After the biopsy I went to a conference, with coworkers along with the big ole bandages on my hip. Boy that was a difficult day. My course of action was similar to yours with a small exception. I was extremely lucky as I have an identical twin sister (mirror twin which our DNA were identical), this made it possible to use her stem cells versus me. Three months after the first one they did the tandem transplant with an unrelated donor as none of my other 7 siblings where not a march.
After the second transplant, I was accepted to a clinical trial, the trial just happened to be my doctors trial she was running on post transplant treatment. My journey started in 2008 at the age of 43 and as of my last follow up earlier the year I remain undetectable.
Take care and sending positive energy your way!
What an interesting story you have, that your identical twin donated her cells! So glad to hear you're doing well!
Praise God 🙌❤
thank God !!!
I accompanied my grandma to her bone marrow biopsy. I was horrified at how barbaric it was. I've often wondered why they don't offer anesthesia for that procedure.
The whole process is Barbaric, the chemo the surgery’s the transfusions. I’m sure the elites don’t use chemo. Lol
Thanks Julie for sharing your story! Your tips and example of self advocacy and education during this ordeal are inspiring! Stephanie: it’s good to see you again!
Stephanie
Thank you for sharing these Patient Stories with us
Julia,you are a remarkable Lady and spoke with incredible intelligence
Well done on your recovery 😊
A dear friend of mine has it. She's in remission. I pray it stays that way!
Same here! So glad she's in remission. -Stephanie
Praise God 🙌 and Prayers 🙏❤.
My dentist sent me to a hematologist after identifying a lump on my right jaw in Dec ‘19. I’ve been on an almost identical treatment program and path you’ve gone through. I just finished my CAR-T infusion in February. In August ‘23 my Lamda, blood platelets, etc. are normal. I watched your video because (MM Deafness) flagged your interview. I lost about 50% hearing in both ears. On the Miracle Ear plan now. The CAR-T treatment was milder than the SCT. Good luck on future treatment.
It's always interesting to hear the experiences of others. I was diagnosed in 2014 and have generally reacted well to treatment besides one episode (won't detail here). The most uncomfortable investigation has been having a marrow biopsy taken from my hip. I live in London and fortunately my consultant is one of the most respected in the UK. I still enjoy a good quality of life. As new treatments are becoming available all the time is good to remain optimistic!
Thank you for sharing your story. The Patient Story is a wonderful source of information and hope for all mankind.
Thank you for sharing your story. I have cll and 5 years ago was treated. My oncologist actually phoned 3 drs at John Hopkins to mutually decide on best chemo treatment for me, so I never went for other opinions.
My treatment is now wearing off and looks like I'll get more treatments again. Best of luck that you remain cancer free.❤
These myeloma specialists all know one another. It's a small community! Great that they concur!
Thank you for the information given and the most important thing is to research, and be your OWN ADVOCATE
My aunt passed away on Dec. 11, 2021 from multiple myeloma. She was sick for months but doctors did not know what was wrong with her. She was finally diagnosed with multiple myeloma but it was too late. She passed away a few days later. Barbara Hoover R.I.P. 🙏
I'm so very sorry to hear about your loss.
I'm So Deeply Sorry 💔🙌
Sorry for your loss. My husband has it and has been battling with it for over 5 years.
Very sorry to hear.
I am going in this direction. The only thing that scares me is the pain. If I can buy 5 more years I will be almost 80 so at 74 I am not going for any of that painful treatment. I have all my last wishes taken care of and they are not going to cut,burn and poison me and still die after all that. Best wishes to all of you and to each his own and may God bless each and every one of you.
Thank you for sharing your story, prayers for remission for you!
For those seeking information about multiple myeloma, please *also* contact the MMRF (Multiple Myeloma Research Foundation) and the IMF (International Myeloma Foundation). They both have a wealth of information and help for patients and caregivers.
As Julie acknowledged, she said she was very lucky to be in the Tri-state area and have *access* to (not direct contact with) some of the top doctors. Granted, we don't all have that accessibility, but help *IS* out there. You have to be your own advocate, be proactive, positive, and stay informed.
Godspeed to all dealing with any health issues, especially multiple myeloma.🕊️🙏❤️🕯️
So entitled
I did a lot of research speaking to the nurse navigator at the MMRF and Info Line at IMF asking who are the top Myeloma Specialists around the country, also searching online. I didn’t have any special contacts at any of the cancer institutions. I called and asked for appointments.
@@JulieC-hb6gs That is what I was trying to get out there after listening to your story to all the negative comments. You did your own research and were/are proactive, positive and resilient. I admire you for being your own advocate! I never meant to imply you had inside contacts or special help. I just know it takes diligence, perseverance, and sometimes tenacity to be your own advocate and find what works best for you.
Wishing you, and everyone going through a health issue journey, or any difficulties, healing and light! 🕊️🙏❤️🕯️
@@Legittoquit1 What on earth makes you think I am entitled? Far from it. I wish everyone nothing but the best, no matter who you are. That is a hurtful comment, you don't even know me at all. 🙏🕊️
@@ElephantsRock19 well your so beautiful and well spoken and you dress like a model . It appears your above . Apologies if I’m confusing myself. Peace and Heath.
Thank you so much for sharing your story! I love that you took a course in order to better understand research papers and studies! Which course was it? Did it help?
I'm lucky to have a bio background, but my mom, who doesn't, wants to improve her study literacy as she does her own research into my disease. So being able to recommend that course to her would be hugely helpful 😍
My husband's baby brother died after 5 years. He did have congestived heart failure. He was 52.😢 He fought hard.
What is the cause of this. Hubby gotl. his from the ma . rines at Camp Lejuene
Please, please, please add high dose bioavailable curcumin 8g daily my sister has had MM for 13 years and after everything stop working she has been using this with great results......don't delay please!!!!!
@wendydussault my mom has MM (diagnosed early 2013), she’s been in remission for the last 10 years but it’s starting to relapse. How has curcumin work for your sister? Improvement of the protein reading In her blood work? Please ask her for me. Thank you so much.
I quit the drugs and relied on curcumin. Zero cancer cells 3 years later.
Thank you Julie for sharing and helping. 🤍🤗
Are you still healthy and in remission ?
This is odd. Ever since 2016 I developed water aversion and food aversions. I still go through those aversions. I also had and have extreme fatigue. I used to eat anything and everything but not anymore. I’ll keep my notes before me now that I see you had food aversions too.
How is your health now? Food revolts me at times too.
I was diagnosed March 21 . I had no sign’s at all.
if no symptoms, what prompted drs to test you?
I was diagnosed January 2022. Had no symptoms. Routine bloodwork revealed it. Had bone marrow biopsy and Oncologist said its not bad enough for treatment. Going for bloodwork every 2 to 3 months to stay up on it. I see each year my platelets, red and white blood cells have dropped. Only symptoms so far is I get real tired and weak at times for no reason it seems.
What do you take to keep it in remission.I have this and am in remission but only take revlimid to keep it in remission is this standard
My mom has MM and is in remission but is starting to relapse. She was never given anything to make it stay in remission?
As Julie said at 8:15, everyone's myeloma is different so there is no single answer to this question. I believe that Revlimid has been the most widely used maintenance drug but you should have an MM specialist who can advise in your case. There is recent, increasing use of multiple drugs for maintenance.
I was on Revlimid for two years. In remission , no Revlimid or Chemo for a year? Revlimid 850$ a pill . Crazy
My best friend of 58 years passed February 24th 2023 from Multiple Myeloma.
😪💔🙌❤🙏 I'm So Deeply Sorry.
I'm sorry.
Sorry
She looks like Cher
So how is she doing now?
Doing great! I am grateful and always say “knock on wood”! 😀🙏
@Julie C may I ask what it was that came up in you're blood work that made them want to do a bone marrow biopsy?
@@crystalr9633 I think they saw some abnormal formations in my lambda free light chains among probably other things. By then they had me come back a couple of times for more labs to rule out other things.
@@JulieC-hb6gs Thank you for replying! I am wishing you all the best in the world!
@Julie C thank you! Wishing you all the best 🙏
Was this after taking Covid vaccine ?
IgG,A Lambda is the worst
I am happy for her results, but in the back of my mind, I surmise that she is privileged and had available medical help that most of our population does not. I do wish her all the best.
Maybe they just have good insurance. She mentioned Hackensack which is NJ right outside of NYC and has great medical facilities. Not sure it’s “privilege” as much as living in the Tri-State NYC area.
She is intelligent,not privileged.
Privileged? Cynical, much. Such a random, thoughtless statement. That kind of mindset, is an ailment in itself. But, rejoice! You can actually heal yourself of this affliction!
I’m afraid you’ll need to begin with ending your pity party. It likely won’t be easy,for you to end your party. But do yourself and the rest of humanity a favor. Start with the wonderful fact, that you are alive. Try challenging yourself to acknowledge, that you can control how you perceive life. All the elements that comprise life.
I’ll go out on a limb here and guess, that you are not the one sole individual, who has been dealt the worst hand, ever dealt.
Really, consider a heart and attitude adjustment. You don’t need to live in a supposedly, “privileged” area, to begin your journey to change.
It’s a challenging assignment, the choice is yours. If you can read, you’re good to go.
Entitled .
Please remove the two trolls from the comments section. This is no place for them, don’t allow it.
Like my daughter says don’t believe google
❤🙏
Do you have to pay to speak to lots of doctors for their opinion
My health insurance covered the consultations. I had several of the consultations via telemedicine appointments. At that time, everyone was on “lockdown” more or less and doctors around the country were offering telemedicine appointments.
@@JulieC-hb6gsmay I get a email from you to ask questions ?
Was she vaccinated ?
the vaccine was later then when she was diagnose
Im guessing insured. In this county, the USA privileged doesnt really matter.
A bone Marrow Biopsy is nothing.
I didn't feel any pain with my biopsy. They had put an IV in and said they were giving me "something to make me not mind as much" which turned out to be fentanyl
thank you! mine is next week and make mistake of looking on TikTok seeing horror stories😮
Yeah my biopsy wasn't painful either. I remember hearing the Dr and nurses talking and when they chipped away at my hip bone. No pain though.
She’s a beautiful woman . Just stunning . Elegant.