Cancer Survivor Story: Non-Hodgkin Lymphoma, Stage 4 (Diffuse Large B-Cell and Burkitt Lymphoma)
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- เผยแพร่เมื่อ 14 มิ.ย. 2020
- Erin is a cancer survivor. This is her story. She had Non-Hodgkin Lymphoma (Non-Hodgkin's) and is in remission after undergoing chemotherapy (R-CHOP, Hyper-CVAD, and Methotrexate, rituximab (Rituxan), Cytarabine) for her NHL subtype - seemingly a mix between diffuse large b-cell and burkitt lymphoma.
This is the full video of her story: how she was diagnosed, what chemo was like, how she dealt with side effects, the importance of being your own advocate, and more.
See her full story at www.ThePatientStory.com.
Direct link: www.thepatientstory.comcancer...
1. GETTING A DIAGNOSIS ( 0:10)
First symptoms of cancer
Primary care visit
Gastroenterologist visit
Getting a colonoscopy
Processing a cancer diagnosis
Breaking the news of cancer to loved ones
2. . TREATMENT DECISIONS & SCANS ( 13:20)
Next steps
Getting a bone marrow biopsy
Undergoing a CT scan
How long does it take to get CT scan results
Did you experience “scanxiety” waiting for test results
Cancer stage
Diffuse large b-cell and Burkitt lymphoma diagnosis
3. FERTILITY & IVF ( 20:05)
Preserving fertility before chemotherapy
Who brought up the issue of IVF
What’s the IVF process like
How’s the egg retrieval process
Small dose of chemo during IVF
4. CHEMOTHERAPY ( 25:06)
Describe the port surgery
Did you like the port
Mentally preparing for chemo
Describe the chemotherapy regimen
Combo chemo regimen to address your “combo diagnosis”
Checking into the hospital
How long were the chemo infusions and hospital stay
Your chemo was “dose-adjusted”
5. CHEMOTHERAPY SIDE EFFECTS (30:21)
Describe the side effects
What helped prevent or lessen the side effects
How to pass the time in between chemo cycles
Side effects got better
Losing hair from chemotherapy
Deciding to shave your head
Blood transfusions
Neutropenia & Neulasta (Pegfilgrastim) shots
Neulasta side effects
6. END OF TREATMENT (50:43)
Mid-treatment scan
“In remission”
You still had to finish the chemo regimen
Follow-up Protocol
COVID-19 and cancer
7. GETTING SUPPORT (59:02)
What do you wish you had known before treatment
What helped get through the toughest times
How to ask people for help and support
How people can support cancer patients
Be your own advocate
_________
Background:
The Patient Story turns in-depth interviews from recent cancer survivors into a FAQ format story along with timelines to give newly diagnosed patients and caregivers a sense of what their lives may look like in the upcoming months. Hear straight from the people who've already been through it.
TPS (formerly OneDavid) was started by Stephanie Chuang, a non-Hodgkin lymphoma survivor, who wants cancer patients and caregivers to get the information they need in a human way, not with medical jargon. Visit www.ThePatientStory.com for more.
If you would like to share a story, give feedback, or just say hello, we'd also love to hear from you! Please write us at support@thepatientstory.com.
I was diagnosed with NHL when I was 70. Treated at The Christie Cancer Hospital Greater Manchester UK. ( Free of charge ) Still going strong at 80yrs. of age.
James, that's incredible. Thank you for sharing - 80 and still going strong, so inspiring! -Stephanie
God bless you and your health. Stay strong and life loving
God bless u
What was your treatment
WONDERFUL!
I survived follicular and Large b-cell I'm thankful to be alive
We are so glad to hear that, Daryl! If you want to share your story, would love for you to get on our wait list. Our intro survey: thepatientstory.typeform.com/to/OJfTUC
My son was diagnosed with mature B cell non Hodgkin burkitts lymphoma. All chemo he has been given he hasn’t responded to. They started treating him as though he has ALL we had a BMA which showed a reduction in the cancer last week. We repeated the BMA this week and it’s shown it’s doubled. I am beyond myself. We live in the uk and our only options are a anti body treatment but hasn’t been done on a child with burkitts if that doesn’t work a clinical trial which uses 3rd party car-t cells. I am praying for a miracle. Please please pray for my baby. I am trying to get a second opinion from the Boston children’s hospital.
We are so sorry to hear about your son's diagnosis and what's happened so far. We are sending prayer, light, and love to him, to you, and to your family.
Walter White I am so so sorry and I honestly feel your heartache. I know nothing I can say will give you comfort right now but know I am praying for you and your family. My heart really does go out to you💓
Oliver was also wrongly diagnosed. They told me constipation from our local even after his platelet count come back at something like 170 and a ultra sound had shown a small thing on his liver. The week leading up to me actually taking him to the hospital he was having nosebleeds, waking up with belly ache and sweats and had very dark bruising to his legs but him being a very active little boy didn’t think much of it, but with me telling the hospital that and their findings they were all the signs of cancer. It was only when it went into a few days and he started screaming in pain from his legs hurting that I took him to our general practitioner who then refereed us to a and e because I couldn’t of just taken him there because of covid.
The royal free in north London mucked up when he was a baby being a type 1 diabetic they should of given me a c section but instead a normal delivery and he got stuck coming out. He had to resuscitated and rushed to another hospital to be cooled. Nearly 9’years on from that the same hospital has done it again. We were transferred to GOSH thinking it’s the best children’s hospital in the world, after nearly 5 months in this slaughter house I wish I had taken him else where. They left my boy to perforate his bowel which then lead to major surgery, fluid all in his body a collapsed left lung a chest drainage and a delay in his next chemo. We later was told he had relapsed and then to be told refectory. He is autistic and partially deaf from his birth. Before him being diagnosed he spent 10 days in gosh paediatric ward.... 10 days where they tried telling me paracetamol was sufficient for his pains. Doctors had everything there Infront if them telling them cancer. It was only by chance that when they needed a mri and I said flat out he won’t lay still for 45 mins and he needed a GA, heamotology took a bone marrow aspirate. Following day we were given his diagnoses. I have had to fight this doctors to listen to me, give me results, tell me what’s going on with him. They hide behind the name great Ormond Street because of the donations they get world wide. There should be a internal investigation into the misconduct and medical negligence families have experienced because I know Oliver is not the only one.
I am so desperately praying for this anti body treatment to work for my baby because I can’t live with out my boy. He has gone through hell he really has. He doesn’t know he has cancer but knows he has something called leukaemia. Everything they ask of him he just gets on with it. He has shown such strength and resilience he really has. I pray he carries on fighting and his given the strength to do that. He has so much to live for his whole life ahead of him.
He is the most special little boy so strong and so brave. I am looking if there is anyone else in the world that has dealt with this type rare child that they can do something to put him into remission. I am beyond heart broken beyond devastated but I live in hope and pray this is working for him. We have another BMA on Friday to see if it is actually doing something.
sometines things just aren't that simple.
I did pray every day. Every morning I thanked god for allowing me to open my eyes for my children for Oliver. I thanked him everyday for my joys and struggles. I prayed every night for giving me that day and asking him for another day to proof how worthy my son is of his life. It is not natural for a mother to have to lay her eyes on her baby’s body in a casket to hold his hand touch his chest and it stone cold and rock hard. It’s not justified for a mama whiteness the life leave her baby’s body. Some say I may have lost my faith but I prayed I even begged god for his life and my baby still was taken from me whilst others get to live and walk this Earth. My son was the most strongest my bravest little boys that ever EVER walked this earth and he never asked for any of what he had to go through. He never complained. He was so full of life and that’s all he wanted to do live. A whole generation of people wiped from taking my son his children his grandchildren his life all gone.
@@filizjohnson2059 I’m so sorry. God be with you and comfort you. 🤍
Congratulations! I'm a survivor of large B cell non Hodgkins Lymphoma, my tumor was by my heart .
Mya! So glad you're on the other side of things.
God bless you. 🙏🙏
I went to hospital 7 times and doctors told me Asthma,flu and all different stuff 8th time then they did more testing and in X-ray showed a mass by my heart
@@whoopz93 Hi, every Cancer is different however my grew very fast when I found out I was already in stage 3
Mya , God bless you...where did you get treated ..which hospital..
On the 2nd of October at 3:55 my beautiful baby Oliver took his last breath in his mamas arms and his heart stopped beating. My brave loving caring courages selfless brilliant amazing kind unique 9 year old little Oliver put all us adults to shame with his short fight with this evil thing that took him. He went through hell... absolute hell and he did it without ever losing his smile. The only thing he ever asked was to go home... every time we had to be in hospital he would ask how long are we here and when are we going home. So on the 25th of September after being told for the 5-6 time in the space of 2/3 months the treatment again wasn’t working and he was to weak to be put on the clinical trial I brought my baby home.
Earlier hours of the 2nd of October I got up to go to the bathroom... me my husband my other son and daughter myself along with Oliver were sleeping in the living room. When I woke up to go to the bathroom Oliver was awake I said to him mummy’s we be 2 mins. I came back down and went to grab a dressing gown from my bedroom that is adjacent to the front room and as I went to lay back down I just looked behind me to make sure I wasn’t going to lay on him..... I have a corner sofa so olivers head in one corner and mine right next to him. As I turned to look.... my baby’s eyes were so wide and he was gasping for breath. I quickly woke my husband up and said look at his breathing and I grabbed Oliver and put my baby in my arms o placed my hand on his chest and his heart was so faint. I said to my sweet boy, mummy loves you and he took his two last breaths and his heart stopped beating. My sweet brave boy who brought me so much happiness immense happiness even looking back on the times he would stress me or I’d be cross with him... all the times he was naughty in reflection they are such precious times that firstly I feel guilty for telling him off punishing him but are just amazing because they were moment s of his life and his life was just full of his smile. He truly was such a amazing little boy he went through a difficult birth, so many trials as a baby of the result of that. Was deaf and autistic. He touched so many people has such a impact on so many people even if they only met him once or had a 1 mins encounter with him, he left a impression on all that were lucky enough to hear his name, talk to him or just bare whiteness to his gorgeous and infectious smile. The shortest stories can sometimes have the biggest impact and that is my Oliver. My time of being Oliver’s mama I dedicated it to him with hospital app, fighting the education system to get him a 1-1 at school or just fighting his corner because he was different and sometimes difficult. My whole world complete whole world has come down crashing around me. I miss my baby every everyday and I don’t know what to do. I never left my Oliver’s side with his 5 month battle with leukaemia or through out his life. We had such a connection such a bond he truly was my soulmate my best friend and I am left feeling every limb has been ripped from me and I’m drowning everyone by eyes are awake. I pray for night so I can sleep and dread the mornings. I simply exist for my other children. I can’t live without my boy there is no life without him. I miss him every single day and I’m so sorry to him as his mama that I couldn’t fix him... mamas are meant to make it better and all go away. I failed him in that. Life will never be the same and I don’t want it to be not without him. I pray everyday he heard me when I said mummy loves you. I miss you so much Oliver baby you are the strongest most bravest boy to of ever walked this earth and more. My grief will never stop because my love never stops. Thank you for picking me to be your mama I was so goddam lucky to have you.... I was lucky and blessed to be your mama. You filled me with joy love light humour as you did everyone you knew. This earth is a darker place without you my boy. Goodnight love you see you in the morning xxx 💓💓💓💓💓
We are thinking of you and your family ❤️
I am so so sorry 😞. It is not fair for any parent to have to lose their child.
I'm bawling. 💔😭💔
I am so sorry, Momma! And I pray with everything in me that you have found at least some sort of peace and healing within this past year.
Your baby heard you... and he hears you every day, I promise you.
I am absolutely steadfast in my belief that he is with you now and that- in what may seem like an eternity to you- you will see and hug him again and it will seem like but a minute of time to him, because time works differently on the other side.
I hope and pray you're doing what you can to make the best of the little time you do have left here, for you, your kids still here, AND for little Oliver, because I know that is what he wishes for you 🙏❤🙏
SOOO MANY HUGS being sent to you and your family ❤💔❤
May Peace, Love, and Light be with you
I'm so very sorry for your loss. Oliver suffers no more in the Loving Arms of God. 🙏
I’m so sorry for your loss. 😢
So happy 😊🙏🏼 to hear you are in remission. Hope it stays that way. Wishing you all the best.🌺🌹💐🥰😘💞🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
I had Non-Hodgkin's lymphoma in 1998 had CHOP; it was back in 2010 more treatments; back again 2018, more chemo; back again now (2020) and I an to start chemo again tomorrow. I am 83 yrs old now.
We are wishing you the very best for this latest round of chemo!
@@ThePatientStory Thanks for the concern and I would like thank The Patient story for the great stories, they help a great deal and this is my 4th round and the chemo is really rough but the info still helps a great deal. This stories seems just like my diagnosis. I may try for CAR-T if I can get in remission again this time per my doctor.
Sir can I get some information about NonHodgking lymphoma
God bless you and hopefully you’ll get cure. 🙏🏻
So happy 🙏🏼you pushed for your medical needs to be met.👍
Your seem so young I’m glad you checked it out even though a lot of people usually get get lymphoma when they’re older.
Lymphoma is actually weird. Most of those diagnosed are in their 20s and 30s...and then bam! Right around the time you get your AARP card, the chances of being diagnosed go up again.
Happy to heard that your fine I also diagnosed NHL in 2018 and get 6 cycles of chemotherapy with retoximab than bone marrow now start retoximab sc as a maintenance
Wt was ur type?
Beautiful woman, inside, and out.
My husband is going through his first round of chemo for nH large B cell lymphoma, double hit. Although there are many different types I thank you for giving us hope and going public. XX. Thank you and blessings.
my dad just had his first RCHOP session for NH Large B Cell, wht was ur husband's experience like?
@@ibtihajulislam386 they are not using Rchop, because this is a double hit, they are using DA-epoch r they seem to have a lot more success with this form of cancer and this type of drug. Sending love and light to your family... I am in the United States and this seems to be the protocol.
@@arvindwasnik8180 ?
@Brad Fox The fact that he has a double hit is a little bit more difficult to treat. This being said they did the dose adjusted Epochr two cycles of that The lymphoma shrunk significantly however the parts that were remaining were still really active so then they tried another type of chemotherapy rIce as a salvage regiment to get him to a new type of chemotherapy Rbendapola it shrunk again did beat him up a little bit but he was not in a wheelchair or anything just very tired then we got a car T trial and we just finished the 30 day mark to see where we are with that. He tolerated it fairly well through all the chemotherapy and Cartee, she has had skin issues really bad it doesn’t hurt it just is really red. We found out with the latest pet scan but the disease is progressing however they are going to biopsy again and re evaluate. Fingers crossed. They are not sure if his skin reaction was because the first Covid shot the buildup of chemotherapy in his body or the Bactrim prophylactic antibiotics. He is off Bactrim and his skin has subsided somewhat. But he still shaking off skin
@@bryandouglass3588 hows it going?
Glad your doing well and that you are optimistic.. Stay strong 🙏💪🏼💪🏼
Thank you for your kind words for Erin!
This is What A Dr Gave me for Christmas.. 2020
me, too.
@@whoopz93 @@whoopz93 It started as a lump in my neck, I noticed while shaving. Thought it was a swollen gland. No pain. Diagnostics went on for 4 weeks. Christmas Eve, surgery biopsy. New Year's Eve, diagnosis confirmed. 3 days later, a port installed in my chest. I have my 3rd chemo treatment in 4 days. Which God-willing means I'm half-way though this bump in the road. Tumor has shrunk from huge and upsetting to barely even noticeable. I was able to shave today normally. The chemo melts the scary tumor very quickly. I really don't need to shave as my beard is gone, the hair on my head is gone, but I still have eyebrows and hair on my arms and chest. But no nose hair! Chemo is not horrible, it's more depressing than anything. The nurses are very special people who maintain a cheerfulness while you are getting the chemo. Basically, every 21 days, I spend 6.5 hours in a chair hooked up to IV bags in a room with many other people going through cancer. I'm able to drive myself, I come home and actually don't feel bad for about 5 days. (Prednisone). Then I get flu-like symptoms, they call it the "chemo crash" because the prednisone wears off. I have been able to continue to do my voiceover work from home. I just rest a lot in between gigs. I learned that if God is to get the glory, I need to let Him do the fighting. I rest in His peace. You will be transformed by the experience and will so desperately want to help others who are fearful. You will be fine. Reach out to me if I can help. People are there for me, and they will be here for you, too. God bless you. Have no fear. Do not worry. Have faith.
Hi I just come across your program. I have gone through 3,different cancers would love to speak with you also in order to help someone deal with cancer diagnoses. Thank you.
My brother in law in Mexico was diagnosed a few months ago, advanced non hodgkins, got his first chemo, contracted Covid, dies a week later 😭
Monica, I am so, so sorry to hear about your brother in law :(. What a terrible loss. Thinking of you and your family. -Stephanie
Hi, thanks for the video.
I don't understand: The stomach pain is persistent? Comes and goes? Stabbing? Dull?
I hate the reoccurring theme I see with women of this age and people telling us we don’t know the pains in our bodies/ they aren’t real
I didn't realize they kept you in the hospital when you got chemo
You may go to a hospital to recieve it, but depending on your condition, you may go home at the end of the process ,which could take minutes to hours- actually, some chemo is an oral pill, and if there’s no observation needed, it may be picked up and taken- I say that to say, the staying part is due to stabilizing , monitoring, treating the patient, not just for the infusion or administration of the actual chemo- hope that helps
I didn't cut my hair I just let it come out all at once in the shower; I think I like this better.
I really feel her pain. My family and friends have been downplaying my symptoms for SO long... Not just loved ones, but also my doctor. I’ve done 5 blood tests in 5 months, no other tests. 🙈 My blood results were off, (low hemoglobin) but not “off enough”, so my doctor told me all my symptoms must be due to psychological issues. 😪
Lumps on my neck, trouble swallowing, chest pains, shortness of breath, itchiness with or without rashes and dry patches, fatigue, easy bruising, anemia, 30lbs weight loss in 4 months...
...yesterday I was in agony and I had to receive TWO shots of painkillers (one of them was morphine...) to get rid of the abdominal pain in my liver area. Wondering if my liver is swollen, since that’s also a lymphoma symptom.
Luckily I’m having my CT-scan this week. I HATE to say this, but a part of me hopes they find something. I’ve been suffering for so long and want to find the cure. This is making me extremely tired.
Mickey, so sorry to hear all that you've been going through. It's frustrating to hear when medical professionals don't take our word and point to what you said - psychological issues. I am glad you are getting your scan done and totally relate to hoping there's some sort of finding because it's truly the not knowing, the waiting part, that can be so difficult. Please know you are not alone. I am going through a second round of that right now, myself (anxiety about possible cancer). Sending you big hugs. -Stephanie
Any update?
How are you now
what??? Praying for you Mickey.
Why does EVERYONE including doctors always downplay things when they are serious?!?! If they dont want to solve medical problems or not know how to go be a chef, tazi driver or even a lawyer. Please dont stay in medicine. Please.
I could not agree more! It makes NO sense to me whatsoever
Exactly! Agree! I hate doctors who dismiss you and the downplaying doctor gaslighting had led to many patients having metastatic cancer. If it was not for me knowing my body, being persistent, getting a second or third opinion would have died from rare life threatening infection. My new doctor went to see him about a lump on my thymus. I asked for a X-ray but he said too much radiation. He ordered an ultrasound and I questioned that. Now I have smaller lumps and one year later asking for a X-ray. If he refuses I will tell him third most cause of death is medical misdiagnosis. I think women have a harder time. It is sad when you know more than your doctor. When you try to educate or talk medical terminology they get this attitude. I am a doctor what do you know? Please people always get copies of all blood work and scans. I have MS for 30 plus years. I had spinal instability. I asked my Neurologist to be referred to a spinal surgeon. She refused. I recently received all Radiology Reports going back 2014. I was shocked the findings were severe spinal stenosis and a life threatening crippling myelomalacia. I have a suspicion my doctor and the Neurosurgeon he referred me is covering up for the Neurologist misdiagnosis. The Neurosurgeon immediately said “all your symptoms are due from MS”. I feel my symptoms are myelomalacia because my gait walking problems started after being in a car accident rear ended. Now I am almost a paraplegic. I am seeing a spinal surgeon and he can do a surgery to stop progression and death. I wrote to the spinal surgeons association and they told me I would benefit from surgery. Doctors have no time to care for patients, do not read Radiology Reports and refuse to listen or learn of rare conditions and/or disease.
Hi, I am wondering how is Erin doing now. I hope all is well.
Eric, thanks for asking. She is doing well :)
My Father is diagnosed with Stage 3 Non Hodgkin's Lymphoma and Treatment is going on USA .. he had his 1st session of Chemo and doing well.. what is the survival rate of Stage 3 Non Hodgkin's Lymphoma DLBCL ?
Hi there, we are not a medical-advice or stats site but you can check the National Cancer Institute's figures. Remember that numbers are based on years past, and there are a lot of new data + treatments emerging. Link → seer.cancer.gov/statfacts/html/dlbcl.html . Good luck to you and your father. -Stephanie
How is he now
Is treatment 6 months?
Is it true that there are some non hodgin Lymphoma type which are way easyer to treat than other? And which types is it?
Hi Semir, we are not a medical advice/info platform, but yes, there are dozens of different subtypes of non Hodgkin lymphoma and they are treated differently. Thank you for watching.
How expensive is to have this disease? I wish I was in America but I'm not
❤️❤️❤️🙏🙏🙏
Can someone tell me if only a mri can find hodgkin?
No , u need to make a biopsy and the inmunohistochemistry test, and then a FISH test ..
Update on me I have multiple swollen lymph nodes in my neck and itchy skin all the time and less energy
Daryl, we are thinking of you. Please make sure to take care of yourself and check with medical professionals.
@@ThePatientStory Thanks I'm getting a biopsy and pet scan
how did you want people to help? not ask a lot of questions or let you talk when you are ready?
Stay strong! I have NH… plus I did 6 cycles already than relapsed. Now I’m doing ICE chemo before bone marrow transplant. I pray the universe takes this disease away from earth. My recent petscan says there is still some left under my arm. Now it’s time for a 3 rd ICE. Geesh so I most definitely feel your pain.
@@melanin666carbon5 I got results they said it was a infection that caused my lymph nodes to swell I hope they're right cause lymphoma is tricky cancer to catch
Why aren’t we seeing the host?
Hi Donald, this was an earlier version where we tried a different format!
has nhk large b cell on tonsic they told i was cured well at least i got 3 weeks cancer free pet scan showed so lets see
I was diagnosed with diffuse large b cell non hodgkins lymphoma
i am sorry my friend also got diagnosed recently. stage 4 doing his first chemo
So sorry to hear about this. Hoping our survivor stories may help in some way: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/
@@9catlover how's your friend?
@@DexterrrrX He had a CT scan and has the all clear now. he is cancer free but needs 3 monthly checks. It is amazing! xx Thank you for asking
@@9catlover okay great news...I wish him long and healthy life.
Interviewer needs to get organized in her questioning
Thanks for your feedback, Beverley. I've been iterating on the interview process hoping to make things clearer for our audience. Have a wonderful day!
@@ThePatientStory I think you're doing great. My friend's 4 year old daughter might have lymphoma so in trying to read and watch everything I can. It's less scary to me to see that people do recover from this.
Seems to be doing fine to me !!!
she needs nothing, she is a survior herself and each of her interviews are excellent. The patient she is interviewing now seems to be the one who is young and disorganized ...who can blame her?
@@ThePatientStoryI like your interview style. One question leads to another, instead of a staccato dat-dat-dat of questions. Keep being you, Stephanie!