Non-Hodgkin Lymphoma Stories: Survivor Talks Chemo & CAR T-Cell Therapy | The Patient Story
Вставка
- Опубліковано 11 сер 2020
- NOTE: Skip to a section via time codes below.
Sonia Su was finishing up grad school when she got hit by a non-Hodgkin lymphoma (primary mediastinal b-cell lymphoma diagnosis), stage 2. After undergoing R-CHOP chemo, she relapsed.
For second-line treatment, she underwent R-ICE and preparation for a stem cell transplant. Unfortunately, the cancer had returned before the SCT could happen. Instead of accepting the chemo and radiation treatment assigned to her for the third time, she looked for CAR T-cell therapy treatments and thankfully, qualified.
Today, Sonia is thriving. She shared her entire patient journey through survivorship with www.ThePatientStory.com. Her full story will be posted here.
TIME CODES (approximate)
Diagnosis
(1:00) First symptoms
(3:42) Scans and tests
(4:30) Core needle biopsy
(5:30) Getting the results
(6:00) Getting admitted to the hospital
(8:50) Navigating the time waiting for answers
Treatment Decisions
(10:33) (19:50) Figuring out where to go for medical treatment
(12:50) Describe the PET/CT scan
(15:20) Describe the contrast dye during the scan
(17:05) How did the oncologist describe the treatment plan
(20:45) Was there a choice on getting a port vs. PICC line vs. IV
(22:57) Talk of fertility preservation
1st Line Chemotherapy: R-CHOP
(26:25) What were the R-CHOP infusions like
(29:42) Importance of caregivers at infusions
(30:35) When did you feel side effects
(32:20) Hair loss
(34:25) How did it feel getting your head shaved
(36:30) Describe the post-treatment PET/CT scan
Relapse
(38:20) Feeling symptoms again
(41:58) Going to the emergency room
(44:00) Staging
2nd Line Chemotherapy: R-ICE & Transplant Prep
(44:36) Preparing for second line treatment
(46:28) Describe the R-ICE chemo cycle
(47:00) Getting a 2nd opinion on treatment options
(48:15) R-ICE side effects
(48:55) What helped with the side effects
(51:42) Losing hair a second time
(52:55) Tests before stem cell transplant (SCT)
(54:10) Getting a stem cell donor match
(55:15) News of second relapse
(56:37) Deciding on 3rd line treatment
CAR T-Cell Therapy
(58:39) Describe CAR T-Cell therapy
(1:01:10) Describe radiation
(1:03:39) Pre-conditioning chemo
(1:04:12) A beautiful surprise before the T-cell infusion
(1:06:38) Describe the actual CAR-T infusion
(1:08:13) How long was the infusion and describe the recovery
(1:09:02) The ICU
(1:12:12) Recovering at home
(1:14:19) How were you feeling before the next PET scan
Reflections
(1:16:12) Survivorship
(1:18:20) Impact of cancer on your relationship with your parents
(1:20:35) Advice for others in getting support during treatment
(1:24:05) How did you get through the worst parts of treatment
(1:27:10) Your non-profit
66 year old diagnosed with NHL DBCL last 11-19-2021 The first 60 days were unimaginable! I wanted to end my life! Fast forward to the present,, I just completed the 3rd cycle of R-CHOP two days ago. The side effects and discomfort level from this third cycle was an 8 !
This has been a wonderful way to hear stories and successes on the different types of cancer. I was diagnosed in November 2021 with DLBCL in the abdominal region. I am 2 months post R-EPOCH treatment and cancer free. I am so Grateful that you are cancer free too.
Just diagnosed exactly the same thing . Let’s fight it we will get through this 🙌🏼🙏🏼💫👍🏼
I was diagnosed with primary type b cell brain tumor. In my 40's, did a stereotactic brain biopsy. They want to start HD-MTX. This story has helped me cope with this.
Shane, I'm sorry to hear about your diagnosis but glad you're under care, and that this story was helpful. Thinking of you. -Stephanie
Stay Strong! I was recently diagnosed at 47. Any honest story is beyond appreciated ❤ For now,,, I'm only able to write about it. 70 lbs lost with zero explanation. Every classic sign at 1st appt., but it took 54 weeks to go thru every test possible. I knew the 1st time I went in. But dr decided to wait 7 months to biopsy. $hundreds of thousands waisted in a yr of unnecessary Costly tests:(
Sending you our best wishes!
@@ThePatientStory thanks!
What’s the update
⁰⁰⁰⁰⁰⁰⁰⁰⁰0
@@jakehart7617 hanging in at 113lbs. Yet to need treatment!!!!!❤️
You are an amazing young woman and so brave! So happy and grateful you are now well!
Vicki, thank you for your kind words! -Stephanie
I had dry cough, then diagnose as DLBCL. 6 cycles of r-chop worked except one lymph node stayed active. The new treatment for me will be CAR T-Cell.
Your young you have bounced back i wish you well
@Jenny, appreciate your well wishes. Sending them right back!
Waaauw! Admiration! I hope you continue doing well! You're a lesson!
Great story, Sonia is a very strong young woman.
I am getting ready to do Car-T and I'm scared. I'd love one of those kits!
Thank you for sharing your journey through NHL. I just started my journey on January 1st of this year. I have DLBCL. Rchop has been terrible and the emotional ups and downs are challenging at times. I was having a hard moment and thought that hearing someone else's story might help. You have been through so much and you are so resilient. I'm so glad you are feeling well.
Sheba, so sorry to hear about your diagnosis. If it's helpful, we have a collection of stories: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/
Did rchop clean the DLBCL. I did 6 cycles and it didn't clean.
Thank you Sonia very much for sharing your unfortunate experience and so glad to hear that you are completed remission.
May God continuing Blessing you and May you have a healthy and happier life back.
In addition, Thanks to The Patient Story and the experienced hostess, we are very appreciated your effort.
Geri, thank you for the kind words!
Hey thanks for your amazing story. I just completed my Car T Cell Therapy for an aggressive NHL in Australia. It's is now post Car T cell. And I have gone through CRS and Nurotoxity similar to what are we're experience. I am just jondering do you always feeling fatigues and how how you back to normal. Thanks in Advance!!
Beautiful!!! She explained it so well! I love the gift idea! I’m going to MDA next week for CAR-T !! Thank you for this 🙏🩸❤️
So glad Sonia's videos could be helpful. Sending you best wishes for your CAR T next week! ❤️ Stephanie
I thoroughly enjoyed watching this interview. The lightweight and ease of talk really helps the rest of us stay calm and optimistic. I pray for healing for you and the world we live in. 🙏
Jessica, thanks for your kind words!
So glad she is doing well so strong cancer is a terrible disease had it twice I'm 74 but when it's young people it's heartbreaking I'm trusting God this time such a brave young girl God bless you ❤
Thank you for sharing your story! I just had my first bone marrow biopsy and am anxiously awaiting my results. This was super helpful, so thank you!
So glad to know this was helpful!! All the best to you💕💕
That’s great GOD BLESS for of us we have to be strong 💪 and beat the cancer it’s nothing
I wish nothing but the best for you! I'm new at this and I feel like every single person is in such a different place in diagnosis, prognosis, and hopeful potential outcome❤ I totally appreciate her strength in the ability to share for others. Knowing your comment is months old, pls don't feel it necessary to share the outcome. That's your personal story, until u choose to share. I pray you feel Better Than Ever!!!🌅❤
@@hamzaalreef1381 حمزه كيف حالك الان
I am watching your video right now! It is very helpful and comforting to hear the way you told your story. I've been having symptoms for awhile..I thought it was autoimmune disease, but now I suspect lymphoma. I've had to repeatedly ask my doctor to look into it. Finally she agreed, so I'm waiting on an appointment to get a full check up. I'm praying that includes CT and pet scans. I'm so glad you're doing good now, and that you remained so strong throughout. It warms my heart to hear how supportive your parents are. I hope the universe blesses, both you and your family. 💜
Thank you for watching and wishing you all the best. ❤️
I pray for a positive outcome for you. But don't EVER stop until you get all the ANSWERS ❤
I hope you're doing better today
I started feeling sick a few months ago. Lost about 30 lbs, was fatigued, started feeling 5 hard lumps (in my neck, behind ears and on my cheek), had extremely painful lymph nodes in my neck and face, also had that bloated face... chest pains, shortness of breath, lots of bruises, bone and joint pain, trouble swallowing (I suspect from the lump in my throat), constant colds, a couple of weeks ago I was gasping for air for 5 CONSECUTIVE DAYS...
My current doctor says he’s checked “everything”. My blood has been checked 4 times, my urine has been checked and I’ve had a chest x-ray.
Low-normal blood ranges, leukocytes in my urine and a clean x-ray.
Because I’m young and my blood ranges are low but normal, my doctor says there’s no POSSIBLE way for me to be sick. I feel so hopeless.
I’ve passed out once from not eating enough due to loss of appetite and I laid on the floor for 45 mins, just hoping that if there’s a God, he would take me away. Just because I had been suffering for so long.
Has anyone had this kind of experience? Doctors telling you you can’t be sick and basically giving up on you when you Know something is wrong? Would love to hear anyone’s thoughts. ❤️
Mickey, to expand on the last comment - yes, I and many others have heard doctors tell us that there's nothing wrong. Advocating for yourself is absolutely the way to go - no one knows you and your body better than YOU do. I am so glad you're getting checked out. Don't hesitate to keep pushing for yourself and for answers. ❤️ -Stephanie
@@ThePatientStory Wow, thanks so much for responding 🙏🏻❤️❤️ I’m finally getting a CT scan on Tuesday, after I had to go to the ER because my liver was acting up... liver enzymes are through the roof and I had severe abdominal pain.
Again, thank you, I’ve watched so many of your videos and I’m sure your videos are helping SO many people around the globe (the Netherlands here!) You and the wonderful people you interview helped me push a little bit harder after feeling like giving up! 🙏🏻
@@mrsmickayla
hey there! I hope you got the help you needed and a second opinion if needed. How are you today? Any diagnosis?
take care 🤗
How are you now
Any problem
I am 76, now diagnosed with
NHL, low grade, B cell
cd 20 positive.
Received 4 weekly cycle of Rituxan with no response Then I received 6 cycles of Bendamustine/ Rituxan.
Had many CT scans and
PET - CTs. It was in remission for year. Last PET-CT 3 weeks ago showed early progression
of nodes in abdomen and
above diaphragm.
Oncologist wanted me to get consult from memorial hospital in NY. It is 90 miles from my place. He told me to go by bus or train. Then he changed his mind and wants to repeat CT in 3 months.
Suffer from much anxiety/ depression.
Keep to myself alone.
Not much support at home. It is really not good felling to visit oncologist.
Had many blood tests.
I few times I thought of
better dead than alive.
Your story gives Hope
I need.
Thanks for sharing your story.
Each day is a blessing.
Family dynamics is not so great.
Wish you well.
🙏🏻
Hang in there!! I hope you are doing alright, I’m supporting you from afar.
Stay strong lets beat this
How you feeling now ? I also diagnosed NHL now I’m fine 💪
I’m feeling great 🥳 Happy to hear you’re good too!! 💪🙏
That’s good!! GOD BLESS YOU
Diagnosed NHL 6 months ago.....
Just had a a suspected lung disease they have done a bronchoscopy Wii console that says they've taken samples seems it's to decide what cancer I am 68 years old I've been a smoker and front look so late I've got emphysema so up so maybe cancer as well will wait and see but pleased with your results you young and deserve lo live a good life best wishes to you
❤️❤️❤️🙏🙏🙏
Wait. So you had SVC? Can you explain a bit more your symptoms with that? I think I have that- swollen face, neck, swollen lymph node in left collar bone, red face, short of breath, hard to swallow, uncomfortable compression on swollen left side lymphadenopathy.
Hi Carol, it's Stephanie with The Patient Story. First and foremost, if you are not feeling well, please make sure to seek professional medical care as we are not a medical advice site. However, I'm happy to share my experience as I also had SVC syndrome. My own symptoms were most of what you said - swollen face, neck area, shortness of breath. What was noticeable was it started that way in the morning and being upright throughout the day, the swollen face/neck would go away. Good luck to you!
This is not a criticism, but simply an observation. It’s interesting that she treats something that is so gravely serious, so lightly with a giddy demeanor. Perhaps it is just a psychological defense mechanism. Not saying I’m expecting her to be completely down and depressed because you got to have a strong and positive attitude to get through something like this. But the constant laughing and smiling and lightheartedness about this is really odd. Hopefully she’s an inspiration and encouragement to others, going through this horrible, devastating, situation. This channel has a lot of interesting stories, and the interviewer is good. I wish there were follow ups on these survivors because I’m sure the audience is interested to know how everyone is getting along.
Hi there! This is Sonia from the video. Thanks for noting that. You’re right - humor and lightheartedness are absolutely coping mechanisms that I and many others have relied on to survive. That’s just how I’ve personally always been, and my own cancer doesn’t change that. This interview also was very factual and did not go into depth about mental or emotional health, but I could have certainly shared the many tears shed and extreme desperation and hopelessness felt, but the goal of this video and channel is about hope and to help others, not to bring even more despair or sadness to an already terrible experience. After all, I am still alive and THRIVING. How can I not be happy about such miracles of life? ☺️ Thanks again for your observation!
@@soniiaa15 And because of that exclusion, your story is incomplete and unrealistic.
It's not about giving hope. Effectively, you are implying that those who truly suffer are just unlucky.
My story of DLBCL was horrific and those close to me know that. It was they who gave me hope.
From Sonia
Rich Bro I hope you can find another UA-cam channel then that focuses on negative things! ☺
=================
I treat people with respect and so I tell the truth. Putting a happy face on cancer is insulting to those who've suffered and many of those have died. I consider it to be serious, so I treat people as adults; not as children, so they can make realistic plans for their therapies.
I don't have to look at youtube to find negative cancer stories. I can simply go to any chemo room and find them there.
@@brozbrothis is her experience...not yours