Cancer Survivor Story: How I Got Diagnosed & Made Treatment Decisions | The Patient Story

Nina shares her entire in-depth story of living with stage 4 diffuse large b-cell lymphoma, the most common type of non-Hodgkin lymphoma, bringing us from her first symptoms, treatment decision making, chemotherapy and side effects, hair loss, and how she used social media to help inspire others.
Nina's full written story will be up at thepatientstory.com/cancers/non-hodgkin-lymphoma soon!
VIDEO 1 (This video): How I Got Diagnosed & Treatment Decisions
VIDEO 2: Going Through Chemotherapy, Side Effects & Hair Loss → • Cancer Survivor Story:...
VIDEO 3: Navigating Life with Cancer (Quality of Life Topics) → • Cancer Survivor Story:...
VIDEO TOPICS BY TIME CODE:
(3:38) How I figured out something was wrong
(5:20) First time going to get medical care (during COVID!)
(7:00) Dealing with the wait for answers
(8:24) Describing the first biopsy
(11:00) Getting "the call"
(13:45) Processing the diagnosis
(14:27) How I broke the news to my loved ones
(17:00) The bone marrow biopsy (getting poked 4 times!)
(19:28) Guidance on the bone marrow biopsy

Пікірлер: 77

  • @roflin101
    @roflin101 Жыл бұрын

    What a dad! Everyone should have a dad like that.

  • @alohatvj
    @alohatvj8 ай бұрын

    I'm so happy that your treatment was successful.

  • @gingin1050
    @gingin105011 ай бұрын

    Hows she doing? Your such a good interviewer.

  • @nataleedenlinger635
    @nataleedenlinger635 Жыл бұрын

    every single story i hear about cancer, especially in women, the doctors refuse to listen

  • @pattimorey7766
    @pattimorey77662 жыл бұрын

    Her father is a good one.. Thank goodness for his advocacy!! A year or two could've gone by with medical professionals prescribing analgesics, change of diet,, more physical therapy,, etc or even psychological counseling & telling her there was nothing the matter, which would've been very daunting and time-wasting

  • @pattimorey7766

    @pattimorey7766

    2 жыл бұрын

    I felt my heart-stri gs tugged for her!

  • @JasonCarney.

    @JasonCarney.

    Жыл бұрын

    For real. Also have heard of being sent to a chiropractor for similar symptoms. And, being female, increases one's chances of being fobbed off as being in need of mental health assistance.

  • @elizabettmallon4796
    @elizabettmallon47963 жыл бұрын

    Same thing happened to me ... went to the er twice and they said everything was fine when I had severe back pain , shortness of breath, nausea for 3 months, dizziness and extreme fatigue... this started on June of 2020... and after going with my primary doctor 4 almost 5 months thinking it was vitamin D deficiency I got diagnosed with diffused large B cell lymphoma stage 4 on January... going through chemo right now RCHOP... I have 2 more to go:(

  • @ThePatientStory

    @ThePatientStory

    3 жыл бұрын

    Elizabett, so sorry to hear you had to deal with not getting it taken care of earlier but so glad you're getting treatment now. Hugs to you! -Stephanie

  • @samant6

    @samant6

    2 жыл бұрын

    Elizabeth how did you diagnose??

  • @_True_World

    @_True_World

    2 жыл бұрын

    How are you now

  • @_True_World

    @_True_World

    2 жыл бұрын

    Ok now

  • @user-hu9ys2mm1b

    @user-hu9ys2mm1b

    Жыл бұрын

    Anyone else experience localized lymph nodes extreme rash??

  • @beauhopkins2085
    @beauhopkins20852 жыл бұрын

    Great interview! I was just diagnosed with aggressive b-cell Non-Hodgkin's lymphoma. Thank you for sharing your story! I'm hope your doing well!

  • @ThePatientStory

    @ThePatientStory

    2 жыл бұрын

    @Beau, sorry to hear about your diagnosis and thank you for your kind words! If you want to sign up to share your story, please fill out our Intro Form → thepatientstory.typeform.com/to/OJfTUC.

  • @crmbonnici

    @crmbonnici

    2 жыл бұрын

    same happen to my son.i can imagine how feel your mother.hope you feel well❤

  • @shilpaghosh8140

    @shilpaghosh8140

    Жыл бұрын

    @@crmbonnici how are your son now

  • @crmbonnici

    @crmbonnici

    Жыл бұрын

    @@shilpaghosh8140 he's good thank god

  • @arianna720
    @arianna7202 жыл бұрын

    Im glad I saw your video. My husband is scheduled for a biopsy. We’ve been told it could be lymphoma but won’t know 100% until that’s done. I am broken, scared but I have hope and faith 😔 I am glad you are doing well

  • @ThePatientStory

    @ThePatientStory

    2 жыл бұрын

    I am so glad to hear Nina's story was helpful to you. I personally understand how awful especially the first part is - waiting for answers. Please know that you and your husband are not alone; I am thinking of you both and wishing for the best. -Stephanie, non-Hodgkin lymphoma survivor

  • @sharondrake5119

    @sharondrake5119

    2 жыл бұрын

    This is no joke 😓 save yourself and loved ones from this painful monster, visit Dr Uromi herbal home on KZread, natural herbs can heal you, i was saved too..

  • @_True_World

    @_True_World

    2 жыл бұрын

    How is your husband result

  • @joyrees7966
    @joyrees796610 ай бұрын

    Lymphoma is so diverse for doctors to believe it's what it is

  • @ruthfulton2079
    @ruthfulton20792 жыл бұрын

    Thku for sharing your story.

  • @thekaerichtexas
    @thekaerichtexas Жыл бұрын

    She's just lucky her dad happened to work in oncology and pushed for it. Otherwise it probably would not have been caught until it was too late. Incredible story

  • @anglophils645
    @anglophils6452 жыл бұрын

    Nina, thank you for sharing. I feel sure that you will have a good outcome. Please tell your father that Seattle Genetics and Adcetris are the greatest. My father was diagnosed with Hodgkin’s lymphoma at age 86. His oncologist did not think that he could tolerate chemotherapy, and was able to get Medicare to approve going straight to the second line targeted therapy, Adcetris. My father went into total remission from wide-spread disease, with no side effects.

  • @michelsooriah692

    @michelsooriah692

    Жыл бұрын

    I am from mauritius. Myeloma survivor. I did my transplant in india oct 19. Remission now💪👊❤🙏

  • @wendyreyes1466
    @wendyreyes14663 жыл бұрын

    Thank you for sharing. Please share links of the other sessions in the description as they are very hard to find. Thanks

  • @ThePatientStory

    @ThePatientStory

    3 жыл бұрын

    Wendy, absolutely will! Just uploaded the second of the video (third will go up later today). Here's the link: kzread.info/dash/bejne/hmSdu9Greqq8fKg.html Thank you for your feedback!! -Stephanie

  • @DONALD1951
    @DONALD19512 жыл бұрын

    Great interview.

  • @ThePatientStory

    @ThePatientStory

    2 жыл бұрын

    Thank you!

  • @tessabarras7792
    @tessabarras7792 Жыл бұрын

    I was diagnosed with aggressive MANTLE cell Lymphoma blastoid variant stage 4 in May 2022 and underwent a R-Bendamustine chemotherapy over the last 6 months as I am 78. Halfway through more than 50% reduction and I am waiting for Pet scan to see whether I am in remission. I am having an injection of maintenance Rituximab every 2 months for 2 years. I didn’t lose my hair, just thinner, and felt tired, otherwise no symptoms so am hoping for a good outcome. Completely unexpected diagnosis as had several chest infections over 6 months, a bit tired, that’s all. M Luckily I had many tests and biopsy’s in 6 weeks before my oncologist told me his diagnosis. it’s quite rare and mainly affects men.

  • @imeldacordova7908

    @imeldacordova7908

    Жыл бұрын

    How are you now? Waiting for my blood test result..

  • @sofs994
    @sofs994 Жыл бұрын

    3:29 first syptoms

  • @Bambotb
    @Bambotb3 жыл бұрын

    I love these stories, if only you can post photos of how patients looked like just before their diagnosis to see tjeir physical shape it can raise awareness more

  • @ThePatientStory

    @ThePatientStory

    3 жыл бұрын

    Great idea, we'll try to get more photos on when possible. Thanks for the feedback!

  • @carmengonzales4541
    @carmengonzales4541 Жыл бұрын

    U have a great dad.

  • @user-vg5gh7cu6k
    @user-vg5gh7cu6k Жыл бұрын

    OK, a few observations. First my situation. I had FL (follicular Lymphoma) 5 years ago. I was diagnosed stage 4. They did a bone marrow biopsy, my bone marrow was "95% infected with Lymphoma." I was to began B & R (Bendamustine and Rituximab) the next day at 9AM. When I got there they told me I couldn't start on those two - BECAUSE: Since I was 95% infected the treatment might "mathematically" kill all the 5% that were not infected. Also - so many cells would be killed that my system might not be able to handle it and it could kill me. I began on B alone. IT (and then later with both) worked. After 6 sets of two consecutive days of treatment my Fl was gone and my next bone marrow test showed "0% lymphoma." NOW on the question of Bone Marrow Biopsies (BMB). I've had four! Almost no pain - seriously no big deal at all! As a Canadian and living in BC I was being treated at the BCCA (BC Cancer Agency) and the Drs who did this procedure, were doing it frequently. I asked one of my Dr why so many people hated BMB's since I "found them a doddle." She told me - "There are two main reasons why so many have pain. One - they are obese. (Like Nina in the above story I'm not overweight) and the second reason is that the Dr who does the test does not have enough experience doing it and it is difficult to find the crest of the bone and know exactly how to do it." Now 5 years later my Fl is back. It's (at least) in my groin, mesentery, arm pits and neck. I'm under a "watch and wait" protocol as it is not "bulky" enough yet to begin opening fire on it. I agree 100% with this assessment. It's now complicated in that in the last three months I've had 2 Cutaneous Squamous Cell Carcinomas in my forehead. One took 2 excisions to get as the first missed "on all margins" and the other was through the skin, the subcutaneous fat and into the skeletal muscle. Very high risk. Another good thing about being Canadian s that there is no fees - for appointments, treatments, tests, biopsies', etc., etc. At least when you leave after your Chemo you wallet is still full. Unless, as a day patient, you bought lunch in the cafeteria. I enjoyed the tuna salad. I highly recommend it! Cancer and I are become close associates. I see cancer as my foe at chess - and - I hate to lose at chess! Keep in good spirits, still have fun, enjoy yourself and share quality time with your friends and families. Last I heard we all die. Live your life on your terms - not cancers!

  • @channahcastelobranco
    @channahcastelobranco Жыл бұрын

    Wow ....Her Dad.. ,😍

  • @teslaandhumanity7383
    @teslaandhumanity73832 жыл бұрын

    She’s beautiful with no hair 🧑🏽‍🦲

  • @ThePatientStory

    @ThePatientStory

    2 жыл бұрын

    Agree 100%!

  • @conniesanpedro7278
    @conniesanpedro72782 жыл бұрын

    Amen

  • @beverlynoelle6941
    @beverlynoelle6941 Жыл бұрын

    Do you focus on mainly blood cancers?

  • @margaretmanzer2194
    @margaretmanzer2194 Жыл бұрын

    can you imagine if you dad was not a doc? on top of it he was a Heme-OCC?

  • @floridaman5125
    @floridaman51259 ай бұрын

    Nice smile

  • @Bambotb
    @Bambotb3 жыл бұрын

    So basically if her dad wasn't in oncology they wouldn't do more tests after the CT and blood lol

  • @eringibson7283

    @eringibson7283

    2 жыл бұрын

    Right. That’s where I’m at right now. I can’t get tests because no one believes me and e been to the ER many times and they say they won’t do extensive testing bc it should come from my primary. It’s really unfortunate.

  • @CatholicLore

    @CatholicLore

    2 жыл бұрын

    You have to fight for it. It’s ridiculous, I’ve been having symptoms for about 2 years. I have my SECOND appointment at the ENT I will demand a biopsy.

  • @krystaldaniels7940

    @krystaldaniels7940

    2 жыл бұрын

    Yes! My normal doctors wanted me to wait anotherknth to see if my lumps sent away. My cousin works at a very good hospital as an oncology nurse. She had me come in the very next day to see their doctors. I had my biopsy today. I'd still be wsiting around had she not gotten me in there

  • @carolv2161

    @carolv2161

    2 жыл бұрын

    @@krystaldaniels7940 Hey How are you doing today? Any diagnosis?

  • @jibcot8541

    @jibcot8541

    Жыл бұрын

    @@krystaldaniels7940 what were the results of the biopsy.

  • @trixie-bellfaith5380
    @trixie-bellfaith5380 Жыл бұрын

    How are you doing?

  • @satinderrayat4843
    @satinderrayat48439 ай бұрын

    Is this story in hindi

  • @sheilareynolds3755
    @sheilareynolds37553 жыл бұрын

    Not "something" ,.... "Someone" by the name of Jesus ,was looking out for you. God has a plan for your life.

  • @jessj.jesusistheonlyway391

    @jessj.jesusistheonlyway391

    3 жыл бұрын

    Amen....in Jesus name

  • @Hosoude22

    @Hosoude22

    2 жыл бұрын

    It wasn't Jesus but priviledge

  • @CatholicLore

    @CatholicLore

    2 жыл бұрын

    Lol

  • @esthergregory5968

    @esthergregory5968

    Жыл бұрын

    ​@@jessj.jesusistheonlyway391

  • @CarolandDave

    @CarolandDave

    Жыл бұрын

    Sorry but if there was a god or jesus people would not be suffering physically and tearing them apart emotionally. I apologise but thats how I feel

  • @mares3841
    @mares38413 ай бұрын

    🙏✨🚣‍♂️

  • @sedhumadhavann3292
    @sedhumadhavann32923 жыл бұрын

    Please give English sub title

  • @ThePatientStory

    @ThePatientStory

    3 жыл бұрын

    KZread should allow for captions as one option. Hope that is available and helps!

  • @Mariahelena-wy6xc
    @Mariahelena-wy6xc Жыл бұрын

    Please let the patient tell us her history and don’t talk so much

  • @mikepict9011
    @mikepict9011 Жыл бұрын

    Its weird to me that you people are all excited about getting to make decisions. Not one under 30 . Really weird culture of child like minds

  • @NunayoBisnez

    @NunayoBisnez

    Жыл бұрын

    Pompous lol

  • @mikepict9011

    @mikepict9011

    Жыл бұрын

    @@NunayoBisnez no . I'm actually the father .

  • @RustyShakleford1

    @RustyShakleford1

    5 ай бұрын

    ​@mikepict9011 it's a system of slavery where most people are blissfully ignorant and finally being able to choose which poison treatment they get feels like choice

  • @satinderrayat4843
    @satinderrayat48439 ай бұрын

    Is this story in hindi

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