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

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  • Опубліковано 29 лис 2024

КОМЕНТАРІ • 70

  • @leonardwilson9876
    @leonardwilson9876 Рік тому +6

    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.

  • @ursulak.2691
    @ursulak.2691 Рік тому +31

    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
      @beinghuman12349 Рік тому

      Hey
      How is your mom

    • @michelsooriah692
      @michelsooriah692 Рік тому

      Your mum diagnosed recently?

    • @beinghuman12349
      @beinghuman12349 Рік тому +1

      @@michelsooriah692 Yes
      last month
      She has been diagnosed

    • @michelsooriah692
      @michelsooriah692 Рік тому +1

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

    • @beinghuman12349
      @beinghuman12349 Рік тому +1

      @@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

  • @brianraupp8058
    @brianraupp8058 Рік тому +12

    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 !

  • @udayadiasnagahawatte8442
    @udayadiasnagahawatte8442 Рік тому +4

    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
      @Turtlenetural224 Рік тому +2

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

  • @marcosplanas1831
    @marcosplanas1831 Рік тому +5

    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
      @ThePatientStory  Рік тому +1

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

    • @graciousgirl5161
      @graciousgirl5161 Рік тому

      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.

  • @jimmoshinskie3955
    @jimmoshinskie3955 Рік тому +5

    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
      @rxmw40 Рік тому

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

  • @MijelomCRO
    @MijelomCRO Рік тому +10

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

  • @hydie0079
    @hydie0079 Рік тому +9

    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
      @fay791 Рік тому

      God bless hope you get an answer x

    • @souravkg333
      @souravkg333 Рік тому

      God is shit@@fay791

    • @jemikabates9038
      @jemikabates9038 Рік тому +2

      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
      @graciousgirl5161 Рік тому +1

      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
      @deborahroth7579 6 місяців тому +1

      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

  • @salemmouchref9174
    @salemmouchref9174 Рік тому +3

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

    • @ThePatientStory
      @ThePatientStory  Рік тому

      So happy to hear this! We just published this video yesterday: ua-cam.com/video/WmnXlozOvQM/v-deo.html
      It includes some of the latest treatments in multiple myeloma!

  • @thiscrazyfuramily138
    @thiscrazyfuramily138 Рік тому +3

    Thank you for this! Very promising!

  • @KC-xh3rd
    @KC-xh3rd Рік тому +2

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

  • @BruceBarnes-el6ev
    @BruceBarnes-el6ev Рік тому +3

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

  • @myrnarito9267
    @myrnarito9267 Рік тому +4

    Thank you i have multiple myeloma iwas diagnosed on dec 2022

    • @beinghuman12349
      @beinghuman12349 Рік тому +1

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

    • @natashab3412
      @natashab3412 Рік тому +1

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

    • @beinghuman12349
      @beinghuman12349 Рік тому

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

    • @natashab3412
      @natashab3412 Рік тому +1

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

  • @CHEMSTAR333
    @CHEMSTAR333 Рік тому +1

    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.

  • @markgriffith2473
    @markgriffith2473 Рік тому +4

    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
      @mrigankasaikia8444 Рік тому +1

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

    • @mrigankasaikia8444
      @mrigankasaikia8444 Рік тому +1

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

  • @indikajayawardana4952
    @indikajayawardana4952 Рік тому +1

    Thank for your valuable information ❤

  • @docimma
    @docimma 5 місяців тому

    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.

  • @amypetra5021
    @amypetra5021 6 місяців тому

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

  • @duasatukecil4128
    @duasatukecil4128 Рік тому +1

    Thank you for sharing salam from 🇮🇩

  • @docimma
    @docimma 5 місяців тому

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

  • @thomaskrymkowski-om5mk
    @thomaskrymkowski-om5mk Рік тому +3

    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.

  • @mac5333
    @mac5333 Рік тому +1

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

    • @emmanuelking9988
      @emmanuelking9988 8 місяців тому

      Search on-line for the Memorial Sloan Kettering Cancer Center(s) and check out Dr Thomas Lodi's UA-cam 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
      @emmanuelking9988 8 місяців тому +1

      People Beating Cancer youtube channel and website.

  • @snowremover
    @snowremover Рік тому +6

    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
      @sherrydaut4910 Рік тому

      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
      @snowremover Рік тому +5

      @@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
      @sherrydaut4910 Рік тому

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

    • @beinghuman12349
      @beinghuman12349 Рік тому

      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
      @snowremover Рік тому +3

      @@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

  • @eamonslattery3232
    @eamonslattery3232 3 місяці тому

    Does it show up in a blood test

  • @pollyannwells5173
    @pollyannwells5173 Рік тому

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

  • @Martty_4
    @Martty_4 Рік тому +2

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

    • @eltonlouiewolf-wilson8345
      @eltonlouiewolf-wilson8345 Рік тому +3

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

    • @Martty_4
      @Martty_4 Рік тому

      @@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
    @thomaskrymkowski-om5mk Рік тому

    What should i take for back pain?