Small LUMP to Lymphoma - Robyn | Non-Hodgkin’s Lymphoma (DLBCL) | The Patient Story

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As a doctor herself, Robyn found a swollen lymph node in her neck. She knew it had to be lymphoma. Scans revealed Robyn had diffuse large B-cell lymphoma, an aggressive form of non-Hodgkin lymphoma that affects B-cells (a type of white blood cell).

Four years after going through R-CHOP chemotherapy, she relapsed and went through more chemotherapy, a stem cell transplant, and radiation. She relapsed a second time only 9 months after therapy. This time, she joined a clinical trial for CAR T-cell therapy.

#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #DLBCL #cartcelltherapy #lymphoma #lymsm #nonhodgkinslymphoma #clinicaltrials

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[Video Chapters]
00:00 Introduction
00:11 How I was diagnosed with lymphoma
00:57 Being a doctor and looking at my own scans
02:23 Telling my kids I had lymphoma
02:47 Relapsing twice
04:14 The fear of it coming back
04:58 There is just so much hope now
05:47 Encouraging others to do clinical trials
06:18 Be your own advocate!

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The interview has only been edited for clarity.

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Small LUMP to Lymphoma - Robyn | Non-Hodgkin’s Lymphoma (DLBCL) | The Patient Story
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I'm so sorry to hear about all of your relapses. With all of the new treatments and clinical trials available now, I'm hoping that something will put you into permanent remission.

th-Nervous-Breakdown
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🙏 ❤️ 🙏
For You & All
Always & Forever

splash
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Thank you for sharing! You are helping so many people with your advice ❤❤💕💕

dupre
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This is so what i needed to hear. My brother has lymphoma had chemo and it returned 2 months later, and his cancer dr wanted to do radiation but the outcome didn’t look good so he heard about Hershey medical center doing this trial with car tee treatment I believe it also is the bike treatment i might be wrong but the problem i kind of feel he is a Ginny pig, he is in about 5 treatment and they re talking a year. I dont’ at this rate i dont’ know if he is going to make it. just this weekend his. Whole neck swelled up he went to Hershey Er and they were not helpful they ran a few tests but he goes for his next infusion on Tuesday and feels they will address. But we are losing hope He has no back up plan and his insurance controls everything but even said what if this iisn’t working i know he feels so alone and i try to be the fixer and i have no idea what to suggest. I am an hour away and got a lot of my own family issues I am dealing. I just thought i would hear some advice from you if you think he is doing the right thing Thanks for any help.

jimkuntz
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Thank you! I have a 3cm x 3cm lump that they say is a group of lymph nodes on the left subclavicular. There are none on the right. The doctor insists they are benign. I have not had a CT scan of neck. Only from the clavicle down to lungs and they said that is clear. I think I need a CT of neck? I’m worried. It’s been a month since I discovered the lump.

SidneySmith
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meanwhile doctors gaslight patient, tell them to not look online and ...

AnonymousanonymousA
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PLEASE HELP!
I know this is the worst place to ask for help but I'm desperate like no words can describe. I'm in pain and suffering, I'm not a liar or scammer
I won't even get medical treatment or medication for pain from the government if I cannot do my biopsy from my own money. The thing is I'm poor, and I don't have 600 dollars for that. I only have my mom to help me and she can only help me with food and letting me stay at her place.
I cannot work anymore because I'm sick and in pain all the time. No one deserves these suffering and I don't want to die without even being able to at least have the right to some pain medication.
I live in the north of Brazil, here we don't have any of the facilities that you people from developed country's have, I need to do my things with my own money or die, please if someone can help me...

dianavallenilla
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I just finished 6 rounds of chemo for my DLBL. Thats all I had. I pray everyday it doesn't come back

kimmarkey
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Thanks for your story. I hope you truly realize and appreciate that you did not have a typical patient experience. You spoke of getting back on the table and telling the technician where you wanted them to scan next. It was so matter of fact. Please be an advocate for those of us who must go from specialist to specialist for years, sometimes waiting months for an appointment, with no answers because we cannot convince them to do the correct testing. I wish good health and healing.

Coratime
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This is a wonderful story of how you were aware something was wrong. I always wondered how a doctor would handle a diagnosis and treatment. It seems you had colleagues who were able to confirm and align you with treatment and resources. Others who are not connected in the medical community are not so fortunate.

HopefulEmpath
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I can’t believe i just found this video. A couple of hours ago i just found a lump on my right side of my neck near my collarbone. Should i wait a couple of weeks to tell my doctor?

joannac
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So much valuable information. Thank you. Sharing your positive attitude and outlook is the best advice.

BarbaraJ
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I am so sorry that you had to go through all of that. On the bright side, you were able to diagnose yourself and get immediate help because you’re a doctor. I have had to wait months for appointments, tests, and diagnosis. Stay well!

bbyrd
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I Had Thyroid CancerPapulary / Folicular-I now have a lump in my neck under where lympnoded were removed and a long standing mode on the opposite side that seems to be growing and pushing into my jaw line. I’m currently taking care of twin 4 year olds and a 6yeard Grandkids while my daughter is being treated for hurt 2 Breast Cancer. I know I need it checked but I just cannot bring myself to tell anyone till she is better.

catherinebridges
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ur an md? weird, cat scan with radiation instead of mri? ...does she not know what caused it? if caused by an infection couldn't she treat it as an infection?

AnonymousanonymousA
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Thank you. I love your briskness. Wishing you all the best.

Ceerads