Cancer Survivor Story: How I Got Diagnosed & Made Treatment Decisions | The Patient Story
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- Опубликовано: 15 май 2021
- 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
What a dad! Everyone should have a dad like that.
I'm so happy that your treatment was successful.
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
I felt my heart-stri gs tugged for her!
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.
every single story i hear about cancer, especially in women, the doctors refuse to listen
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:(
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
Elizabeth how did you diagnose??
How are you now
Ok now
Anyone else experience localized lymph nodes extreme rash??
Hows she doing? Your such a good interviewer.
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!
@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.
same happen to my son.i can imagine how feel your mother.hope you feel well❤
@@crmbonnici how are your son now
@@shilpaghosh8140 he's good thank god
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
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
This is no joke 😓 save yourself and loved ones from this painful monster, visit Dr Uromi herbal home on RUclips, natural herbs can heal you, i was saved too..
How is your husband result
Thku for sharing your story.
Thank you for sharing. Please share links of the other sessions in the description as they are very hard to find. Thanks
Wendy, absolutely will! Just uploaded the second of the video (third will go up later today). Here's the link: ruclips.net/video/T0iYorJGVLE/видео.html
Thank you for your feedback!! -Stephanie
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
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.
I am from mauritius. Myeloma survivor. I did my transplant in india oct 19. Remission now💪👊❤🙏
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.
How are you now? Waiting for my blood test result..
Lymphoma is so diverse for doctors to believe it's what it is
Great interview.
Thank you!
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
Great idea, we'll try to get more photos on when possible. Thanks for the feedback!
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!
U have a great dad.
3:29 first syptoms
Wow ....Her Dad.. ,😍
Do you focus on mainly blood cancers?
Amen
She’s beautiful with no hair 🧑🏽🦲
Agree 100%!
Nice smile
can you imagine if you dad was not a doc? on top of it he was a Heme-OCC?
How are you doing?
Is this story in hindi
Please give English sub title
RUclips should allow for captions as one option. Hope that is available and helps!
So basically if her dad wasn't in oncology they wouldn't do more tests after the CT and blood lol
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.
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.
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
@@krystaldaniels7940
Hey
How are you doing today? Any diagnosis?
@@krystaldaniels7940 what were the results of the biopsy.
Not "something" ,.... "Someone" by the name of Jesus ,was looking out for you. God has a plan for your life.
Amen....in Jesus name
It wasn't Jesus but priviledge
Lol
@@jessj.jesusistheonlyway391
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
🙏✨🚣♂️
Please let the patient tell us her history and don’t talk so much
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
Pompous lol
@@NunayoBisnez no . I'm actually the father .
@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
Is this story in hindi