Multiple Myeloma: What New Patients NEED TO KNOW | The Patient Story
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- Опубліковано 24 чер 2024
- Patient advocate Cindy Chmielewski, also known as the "Myeloma Teacher," has been living with multiple myeloma for nearly 15 years. After experiencing excruciating back pain for two years, she was diagnosed with IgG Kappa stage 3 multiple myeloma. After learning more about her diagnosis, she now helps other myeloma patients learn more about the disease and the importance of being actively involved in your care.
In this conversation, she speaks with Dr. Caitlin Costello a hematologist-oncologist at the University of California, San Diego and Dr. Sagar Lonial, the chief medical officer at the Winship Cancer Institute at Emory University.
They discuss cutting-edge treatments and therapies for both transplant-eligible and transplant-ineligible patients, combination therapies and the necessity of stem cell transplants.
Full story & transcript → www.thepatientstory.com/medic...
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Contents of this Video:
00:00 - Intro
04:10 - Transplant eligible and transplant ineligible patients
06:51 - Improving frailty in patients
07:53 - Treatment for transplant ineligible patients
10:33 - What is maintenance therapy?
12:30 - Updates on the MAIA trial
15:02 - Using 3 vs 4 drugs for treating transplant eligible
17:23 - Do you think the 4-drug combination will be the new standard of care?
18:47 - Who is eligible for quad-based therapy?
20:26 - What does it mean to be high risk?
21:39 - Side effects for different drug combinations
25:03 - Necessity of stem cell transplant for patients
30:50 - IVIG and daratumumab
32:28 -Lowering dexamethasone for frail population
37:10 - FasT CAR-T cells
39:11 - Seeing a myeloma specialist
#multiplemyeloma #multiplemyelomaawareness #MMSM #thepatientstory #cancersurvivor #cancerstories #ASH22 #myelomatreatment #bloodcancer #cancer
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.
I got my Diagnoses just a few days ago. This story inspires me. Thanks for sharing your story.
This female doctor is outstanding
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
Thank you for this video. This is a really informative video!
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.
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’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.
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.
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)?
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
Thanks Ma'am
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! ❤
Same year I was diagnosed with multiple myeloma
Well done 👏 you
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.
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?
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-gJK 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.
I have it now too
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
Does Medicare cover these drug treatments? If so, for how long?
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.
What are the side effects??
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.
What type of myeloma do you have.
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.
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.
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?
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 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
Emm. Yea id like to no too...😮sounds like a bullster
seems like you would want to tell everyone what you are taking for multiple myeloma now for 15 years .is it a secret .
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
are you wanting money to tell what you are doing for the last 15 years .please help folks are wanting to know to live .
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