Multiple Myeloma in 2023: What Patients & Caregivers Need to Know Now! | The Patient Story

There are so many developments happening in multiple myeloma! While this is wonderful, it is getting harder to keep track of all the potential updates and changes for those living with and caring for a loved one with myeloma.
The Leukemia & Lymphoma Society (LLS) and The Patient Story bring you this program out of the biggest blood cancer/disease conference every year where top doctors and researchers discuss the most important updates (American Society of Hematology, or ASH) which took place December 2022.
Long-time myeloma patient and advocate, Jack Aiello, leads this conversation with Dr. Joshua Richter, Multiple Myeloma Director for Blavatnik Family-Chelsea Medical Center at Mount Sinai and Dr. Muhamed Baljevic, Plasma Cell Disorders Research Director for Vanderbilt-Ingram Cancer Center.
Thank you to Karyopharm Therapeutics for its support of our patient education program!
Full story & transcript → www.thepatientstory.com/medic...
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Contents of this Video:
00:00 - Intro
5:11 - What are bispecific antibodies?
7:29 - How soon will patients be able to start on bispecifics?
8:44 - When will bispecifics be available in Community Cancer Centers?
11:24 - Will bispecifics be given in the outpatient setting?
12:22 - Thoughts about patients needing hospitalization with bispecifics
15:40 - Limited duration treatment with bispecifics for relapsed/refractory myeloma patients
18:15 - Who would qualify for bispecifics?
19:36 - What is the overall takeaway for CAR T-cell therapy?
21:24 - How do you choose CAR T or bispecifics and in what order?
24:37 - What role do ‘novel therapies’ play?
25:30 - Understanding what dose is best for Selinexor
28:23 - How do we include more diverse populations in clinical trials?
#multiplemyeloma #multiplemyelomaawareness #bispecifics #CARTtherapy #CAR-T #cancer #stemcelltransplant #MMSM #ASH22 #thepatientstory #lls #myelomanews #myelomadrugs #cancerpatient #cancercaregiver

[@leonardwilson9876]

Thank God I'm going through it now in December I'll be getting my stem cell transplant and I pray that God gives me the same time if not I've lived a wonderful life.

[@brianraupp8058]

Exciting to hear so much research is being done and the doctors seem so hopeful for the treatment improvements already in the pipeline. With so many other maligncies I could have been hit with I feel fortunate in a way that it was MM. With the aggressive treatment I received so far and upcoming SCT I could very well see my yet-to-be-born granddaughter graduate from high school. Keep up the wonderful work, MM researchers everywhere !

[@ursulak.2691]

Thank you for this video. And hearing you have lived 30 yrs with diagnosis has given me hope that when my mom starts treatment we will be as fortunate as you.

[@beinghuman12349]

Hey How is your mom

[@michelsooriah692]

Your mum diagnosed recently?

[@beinghuman12349]

@@michelsooriah692 Yes last month She has been diagnosed

[@michelsooriah692]

@@beinghuman12349 from What country. I am from mauritius. Diagnosed Aug 18. BMT oct 19. I am on remission👊💪🙏❤

[@beinghuman12349]

@@michelsooriah692 I am from INDIA my mother diagnosed last month Please suggest me some information I will wish you Good Luck for your BMT will pray for your good health

[@thiscrazyfuramily138]

Thank you for this! Very promising!

[@udayadiasnagahawatte8442]

I was diagnosed MM in 2018. and had treatment 16 chemotherapy four times per month. But Doctor refered me to transplant ( B.M). Its done at Maharagama Apeksha Hospital Sri Lanka by Dr. Prasad Abesingha and his staff. Since then gave me medicine for 24 months . Now I m not having medicine but appear to clinic in every three months with s.p.e and full blood count reports.. Thanks you all for explanation like this. Appreciative and brings me pleasure .

[@Turtlenetural224]

exactly with my jouney. just done autologous SCT 44days ago. and im just 39 when diagnosed mm.

[@MijelomCRO]

Great seeing you and sharing your story. You never stop, thank you.

[@hydie0079]

I had to call the ambulance for my dad and they thought he had sepsis but they did a scan and blood work and he was diagnosed with Multiple Myeloma and he died the next day 😭 They said he had cancer everywhere....he never had any symptoms until the day before he died... 💔 We just had his funeral Friday 😭😭😭😭 I don't understand why didn't his Dr catch it why didn't he have any symptoms??? I'm so angry and absolutely heartbroken 💔 God bless you I'm so happy you're doing well ❤️ xx hydie

[@fay791]

God bless hope you get an answer x

[@souravkg333]

God is shit@@fay791

[@jemikabates9038]

Back pain is very common symptom. Almost every person my husband and I meet while he is getting chemo has had that very symptom which led to them getting diagnosed. Did your dad complain of a nagging back pain.. and I am so so sorry for your loss hun…

[@graciousgirl5161]

I am truly sorry to hear about your father. My husband got diagnosed when he was 41 years old. The day he got diagnosed he was hospitalized.. The symptoms are back pain, poor vision, weight loss, no energy, & nose bleeds.

[@deborahroth7579]

I did not have any symptoms & still don't going into my 1st relapse (including no back pain). I had some medical issues but doctor blamed other things due to not being familiar with rare cancer

[@jimmoshinskie3955]

Thank you Jack. We go April 6 to St. David’s Hospital in Austin to determine possibility for T cell transplant. This video helped us understand more. God bless you all.

[@rxmw40]

Who is your doctor? I am in Austin but travel to MDA in Houston.

[@KC-xh3rd]

Thank you for bringing this discussion. We are seeing Dr. B now. He is great!

[@indikajayawardana4952]

Thank for your valuable information ❤

[@salemmouchref9174]

This was the best video I watched about multiple my Loma in a long time. Thank you so much.

[@ThePatientStory]

So happy to hear this! We just published this video yesterday: kzbin.info/www/bejne/jZ7RiZ-lr7Sph68 It includes some of the latest treatments in multiple myeloma!

[@marcosplanas1831]

My sister has been diagnosed this week, I’m now starting to educate myself with this disease, you have made me have a little brighter picture mm

[@ThePatientStory]

We are sorry to hear about the diagnosis - glad that this was helpful!

[@graciousgirl5161]

My husband has had it for almost 6 years... He has the most aggressive MM. We have done 5 clinical trials / car-t-cell treatment / 3 DCEP treatments.

[@CHEMSTAR333]

Thank you for such detailed information. Please continue. It will be good if you do the explaining in some simple way; if at all possible. Thank You Very Much.

[@thomaskrymkowski-om5mk]

My MM was in remission after velcade chemotherapy. Mspike could not detect any abnormal protein until a few months ago. Now they want to watch the MM with tests every month. I am 50 lbs overweight so my back pain may be related to being overweight but i will tell my MM doctor about it.

[@BruceBarnes-el6ev]

very educational and Jack , you did an excellent job as a moderator.

[@ThePatientStory]

Thank you for watching!

[@duasatukecil4128]

Thank you for sharing salam from 🇮🇩

[@myrnarito9267]

Thank you i have multiple myeloma iwas diagnosed on dec 2022

[@beinghuman12349]

How are you now My mother has been diagnosed with MM Last week Please provide me some information

[@natashab3412]

My brother diagnosed in dec 22 also. What type do you have?

[@beinghuman12349]

@@natashab3412 Now a days Multiple Myeloma patients have various treatments available is it right

[@natashab3412]

@@beinghuman12349 yes. Lots of difffent treatments available. More every year

[@amypetra5021]

Sooo, does Bend Oregon have a multiple myeloma support group?

[@markgriffith2473]

My dad had multiple myeloma he lived to 82. sepsis and kidney failure is what ultimately got him I guessing that a related progression . He did chemo ( shot form once a week ) and a pill that was really expensive Medicaid and his insurance pick up the cost it seem he went down hill faster . .My sister friend Dad had it and was taking a shower and his leg gave way and broke he passed soon after few days . You beat it , maybe treatment continues to get better.

[@mrigankasaikia8444]

Same here my father is suffering from kidney problems one year remission of multiple myeloma

[@mrigankasaikia8444]

How long your father lived after he was diagnosed with myeloma?

[@pollyannwells5173]

Is it OK to just go on hopise and how long can I live after Diagnosis?.

[@docimma]

What studies are in Dallas (preference) or other areas in TX now? Need enrollment for formerly very active golfer 82yo with year 8 MM, no other comorbidities. Chemo has reduced his quality of life due to destructive neuropathy.

[@docimma]

What is disappointing is that some patients only receive neuropathy causing chemotherapy which reduces their quality of life.

[@mac5333]

Help, where can I get help for my loved one with the same diagnosis? Help me please, please, please!

[@emmanuelking9988]

Search on-line for the Memorial Sloan Kettering Cancer Center(s) and check out Dr Thomas Lodi's KZbin channel, the Fasting Escape's channel and People Beating Cancer youtube channel. Look up benefits of turmeric (curcumin), Essaic tea, Soursop (Graviola) tea and water only fasting, Valto Lingo's studies on intermittent fasting. Lots your family member can do ALONG with conventional treatments...God bless 🙏

[@emmanuelking9988]

People Beating Cancer youtube channel and website.

[@snowremover]

I have had a break from it for 10 years after SCT, and maintenance, but unfortunately I think I am relapsed. PET scan coming up Feb 23rd

[@sherrydaut4910]

So very sorry you relapsed after 10 year. By now I'm sure you've had your pet scan. I'm truly hoping you received good news. 🙏 If not, what is the recommended treatment moving forward. God Bless

[@snowremover]

@@sherrydaut4910 Thank God and Medicine, but I didn't relapse! There is no sign of cancer anywhere, but I am having inflammatory problems that have to be dealt with. I am very blessed 🙌

[@sherrydaut4910]

@@snowremover Wonderful news! Hopefully your inflammatory issues are being treated so you can enjoy the life you deserve.

[@beinghuman12349]

Hey My mother has been diagnosed with MM last week We are in much panic Please reply I am from INDIA I have no idea what is it 😭😭😭😭

[@snowremover]

@@beinghuman12349 it's a blood cancer, but there's so much they can do for it. Make sure you have a good oncologist who specializes with MM I WAS very scared also, but am here 10 years later

[@GD-cr5um]

Chemotherapy is so bad my partner has suffered neuropathy. Our medical system is fraud

[@eltonlouiewolf-wilson8345]

I'm sorry your partner had a bad experience, but it saved my partner's life!

[@GD-cr5um]

@@eltonlouiewolf-wilson8345 it doesn't work for everyone and it screws Ur immunity. In cancer u need to treat it with healing intricate parts not throwing a truck full of poison to shut down the immunity. No wonder many patients in remission get the illness full blown in years to come.

[@thomaskrymkowski-om5mk]

What should i take for back pain?