Non-Hodgkin Lymphoma Stories: Stage 4 Survivor Shares Her Entire Treatment Journey | Mags' Story
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- Опубликовано: 13 авг 2020
- Mags Bujalski was diagnosed with stage 4 non-Hodgkin lymphoma, subtype primary mediastinal b-cell lymphoma (PMBCL).
In this The Patient Story interview, she bears all in talking about everything from her R-CHOP chemotherapy, to a rush to treatment that prevented her from being able to even consider fertility preservation, to all the mental and emotional stresses of cancer, especially as a young adult.
Her full story will be up on www.ThePatientStory.com.
We will also update with time codes when the transcription is done.
After listening to many cancer stories, it seems to be a common factor that people were VERY busy before diagnosis. I've never heard anyone say 'yeh, I just used to go for walks, watch a bit of tv, sleep...'. It's always-'i was super busy, went to school, had a fulltime job, ran 40 miles a week, looked after my family, volunteered....' Perhaps we can learn something from that? We need balance in life. We ned to get enough rest. At rest is when the body repairs itself. It's said we all have cancer cells in our body and perhaps they get a chance to take hold when we never rest or are in a constant state of stress? Just something to consider I think 🤷♀
Absolutely
Definitely something to consider.. anyone can get it that's for sure
Yes, busy seems to be the buzzword. No-one seems happy unless they are run ragged.
Pacing our lives and rest is so important.
Stress and too busy to rest or comple sleep cycle...yes...you are absolutely right
yes, I am 17 and just found out. I have lymphoma cancer. I was dismissed for seven months straight and missed diagnosed. They told me it was fibromyalgia. They told me it was a tortocollitis. They told me it was an issue stemming from my TMJ problem. I knew something was up. Now I’m heartbroken and terrified for chemo.😢
I recently just found out that I have lymphoma only two days ago. I should find out what type today. I’m extremely scared. I have extreme anxiety. I fainted from the bone marrow wounds. I’m only 17 years old and i felt my life was just about to start. I turn 18 in just a few weeks. Watching these videos help me. I hope that after I get rid of this cancer, I can come onto here and share my story. I got misdiagnosed for seven months straight. 😢
U will be cancer free soon
I was 15 when I was diagnosed with non-Hodgkin lymphoma specifically DLBCL, 6 sessions of chemotherapy, almost 4 years remission and I’m still anxious I’ll experience it again. Anyways, Godbless us all🙏🏻
I completely relate to this. I was 30 when I was diagnosed with the same cancer. 4 years later, I am also still anxious. You are not alone. ❤️ Stephanie
Normally comes back after 7 - 10 years and sometimes never.
😊
@@rajabhattacharya4127 technically after 5 years remission it’s considered cured. Let’s be positive
What were your symptoms?
I have the exact same cancer. I'm on my last round of chemo. It feels great hearing someone else's story and knowing I'm not alone
Hope you're doing well
I did EPOCH-R for 9 month’s in February-November 2018 and it did not work on me, then a Car-T Cell transplant 12/2018 and again epic fail, so now i did a bone marrow transplant on the 7/6/2020. i have a High Grade B-Cell Triple Hit Non-Hodgkins Lymphoma with MYC, BCL2 and BCL6. I received a 14/14 Allo stem cell bone marrow transplant, and to be honest I’m doing awesome. I am at +151. The tricky thing is you have to be considered in remission to be eligible to get the bone marrow transplant. Luckily I was able to do a mixture of drugs that are in a trial at UCLA and the second I was in remission I was able to do the bone marrow transplant. now i’m in complete remission.
I was recently diagnosed with type b cell primary brain lymphoma non Hodgkins. The local university hospital suggested RMT chemotherapy as first line. I'm debating on going to the Mayo which is out of state. I'm scared and fearful of what's to come. I'm only 44 years old. I'm glad you're still here and gives me hope. 🙏
I had such a wonderful time during this interview! Thank you very much for the opportunity, Stephanie☺️
Mags, you're the best! So glad you're part of our TPS family. Will post your links when we post your story!
Are you still fine?
You’re remarkable as you’re so matter of fact about everything and I love that!! Seems like you live your life and roll with the punches and won’t waste a second worrying about what will happen tomorrow. So many people would love to live life like that! God Bless! 💛💛💛
Stephanie is a very good interviewer. She listens very well 😊
@@stesnjak Yes. She's fine now. She has a channel here on YT, if you search her name.
I was diagnosed with breast cancer and during my journey of assorted scans and then a biopsy they discovered I also have Non Hodgkins Lymphoma in my retroperitoneal abdomen upper and lower. Almost two weeks ago I had my double mastectomy ( 3 different cancers in my breasts ILC in my right breast and lymph nodes, and two aggressive cancers that never showed up on scans on my left breast, The day before my surgery I saw my Oncologist and found the result of my bone marrow biopsy. He said it’s slow growing but it is B-cell and is 70% in my bone. It is stage 4. He said the good thing is it’s treatable and as I start to get symptoms he will treat it, every 3 months I’ll see him and I’ll have blood drawn every 3 months - he wanted to have me get through mastectomy first”. He made an appointment for me July 9th, next week when the pathology reports will be back. Blessings to you and praying for the very best for you!
My Grandad Was Diagnosed with Stage 2 B-Cell Non-Hodgkin Lyphoma 3 Years Ago and the Tumor was in the Left Hand Side of His Neck and it Damaged His Vocal Cords, and His Voice Still Hadn’t Gone Back to Normal After a Year and at That Point They Said it was Very Unlikely That His Voice Would Ever Go Completely Back to Normal, and the Damage was Likely Permanent But Thankfully He’s On Remission Now and He’s Ok and That’s the Most Important Thing
Hi! I have the same diagnosis as Mag's but sadly I suffered multiple biopsies, chest tube and pigtail insertions, pleuredisis and such. And I'm starting my RCHOP chemotherapy next week. This interview made me feel like okay wow now I can relate my my pain to someone.
Deithra, we are thinking of you as you navigate your diagnosis and sending you hugs for RCHOP next week. So glad to hear Mag's story resonated with you; if more stories might be helpful, check out www.thepatientstory.com/cancers/hodgkin-lymphoma.
Are you fine now?
How are you now
We are so glad you did decide to share! Went through breast cancer treatment in about that same time! Great Job!
Thankyou for this.
Thanks for sharing, praying for you beautiful!
My beautiful mom just got diagnosed with lymphoma yesterday. I'm trying not to panic and this video helps us keep being positive 🙏
I am so sorry to hear about your mom's diagnosis. Please know you and her are not alone. If helpful, there are other lymphoma stories here: www.thepatientstory.com. Sending you both big hugs. -Stephanie
@@ThePatientStory we just got the results of the second biopsy and it's non Hodgkin's mantle cell lymphoma.. We read that it's not a very good one. Thank you so much, I'll keep researching ❤️🙏
@Eleni Belle, I am glad that you got answers. We have spoken to MCL survivors who share their experiences and seem to be doing well. I hope they are helpful: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/mantle-cell-lymphoma/
@@ThePatientStory we're watching the videos right now. This is so helpful and we're so grateful for all the detailed info about everything
My dad was diagnosed with stage 3 non hodgkin's lymphoma a year and half ago.. It was very tough at first.. I had a very bad anxietiy periods.. but things became easier now.. You will be fine
I hope my dad and your mom becme free from it very soon.. God bless you
What a strong and positive person. Very mature and honest. Two months ago I noticed a small lump on my left neck. Had a fine needle biopsy which found no malignant cells and the needle aspirated mostly liquid and shrunk the lump a lot. Results were deemed inconclusive though showing some atypical cells so its suggested to get a core biopsy.. I haven't decided to do that yet. The aspiration really reduced the lump.
Thank you for sharing your story! 🙏🤩
So glad Mags' story was helpful! -Stephanie
Thanks for such a positive outlook. I just received my first Petct Inj and will get my results in a 9 days.
Brilliant video, so clearly explained and a big comfort. I was also diagnosed with Stage IV Non-Hodgkins lymphoma in July and at first they weren’t sure whether it was Lung cancer or NHL, it was really strange but when I was diagnosed I felt more than anything relief it was lymphoma rather than lung cancer. The RCHOP chemo really didn’t make me sick at all (the chemo was much less daunting than I thought and the nurses were brilliant) thankfully now the tumour has gone thanks to the chemo I’m about to have clean up radiotherapy as a precaution to help prevent it from returning.
Jamie, so glad it was helpful! And so glad that the tumor is gone, and that on top of that, the chemo didn't make you sick. That will give others strength, I'm sure! -Stephanie
How much rchup chemo round u have
@@ThePatientStory thanks so much Stephanie I do hope so.
Hello . I had the same lymphoma but just got 6 chemotherapy treatments no radioterapy.. that was in 2020 and they just did a biopsy of some lumps that I got and they told me I got it again..
@@edgarmorales7132 my brother had the diffuse large b cell lyphoma stage 3 and he recieve 6 cycle of rchup and 2 cycle of rituximab+ metharexate 5000mg mean 8 cycle and now he is well everything is in the hand of Allah
I was recently diagnosed with type b cell primary brain lymphoma, non hodgkins. My family and I are terrified. The local oncologist suggested RMT chemotherapy. I haven't started anything and trying to decipher staying local or going to the Mayo out of town. I'm only 44 male. it's crazy.
how are you doing now?
@MegaBaller313 I'm alive and well all the cancer is gone and remains gone. I also did an autologous stem cell transplant to make sure it never comes back.
I’m watching this because rn I have most if not all the symptoms of lymphoma and I’m trying to go the doctor tomorrow I’m scared, this interview is helping a lot
I'm so sorry to hear you're dealing with all that uncertainty - glad you're getting medical care to take a look. Sending you hugs. -Stephanie
Are you okay now?
I was diagnosed in March of 2023 with non Hodgkin's lymphoma dlbc then after my first scan it came back stage 4;with no symptoms. I had some other under lining medical issues I had to work on by the 3rd week of July I started my first round of r chop ,I did 3 sessions before the next scan showed it wasn't working . I also had no down time I worked up to the day I go in for tests and chemo and went back to work after . Now my mass is back and worse .I just underwent a collection of my t cells . Now I was supposed to start radiation to attack the mass .but I'm afraid I won't be able to do it from the pain and limited range of motion . Out of the whole journey this is the only time I'm kinda scared of what I'm going to do now . If I can't do the radiation I'm ready for another round of chemo .but they need to start it ASAP . Just so they can get the brain MRI before my transplant . I figure this whole thing was God's way of bringing me back to him .I know he won't put more in me then he knows I can handle so i get to drive 2.5 hrs back to the mato clinic.just to not be able to get radiation . It's Saturday .the earliest I could get chemo would be Monday . The not knowing is the most frustrating.
She’s amazing brilliant bilingual, I like the glasses:)
Great interview, so many great questions that I want the answers to, currently waiting on my full diagnosis from my biopsy results.
Renae, hoping you have been getting the answers you're looking for. We have more stories up in case you might get some comfort/info from them: www.thepatientstory.com/cancers/hodgkin-lymphoma.
How did you find out I started with a rash have to have a biopsy too 😢 I’m about to get a tummy tuck cause I keep getting cyst and infections from my c-section so my insurance covers it due to I have itp and no spleen so dangerous to keep getting infections anyways I developed a rash all over not eczema and my hematologist said my itp can turn into lymphoma so there gonna do a biopsy when I have my surgery
@@tinaschultz1976 I went to the ED for back pain, (2 bulging and 4 degenerative discs) which they found when they did a CT scan... which also showed Lymphadenopathy in my stomach, then came a full body CT which found more all over my body. Then the biopsy of my lymph node under my arm (I did have a small lump there) biopsy came back as Non Hodgkins Lymphoma Diffuse large B cell. I’ve now finished 8 cycles of chemo and have a final PET scan next week, fingers crossed for it to be clear. Wishing you all the best for your biopsy.
@@renaekelly77 heyy...hope it's fine?
@@renaekelly77 it's good or not?
Haha, very sneaky to photo the paper! I'm going to remember that one!
My ref blood cell count is very low everytime do blood transfusion many times doctor suggest colonoscopy and in colonoscopy report say circumferential friable erythematous growth noted in ascending colon doctor took biopsy of this biopsy report shows large B cell non Hodgkin's Lamphoma and SC screen shows that it mass growing and take place but i totally confused and can't understand how is this possible how colonoscopy find lymphoma through growth in ascending means colonoscopy done only iner side things shows can't understand it's only in iner side or outer side or what don't know what that
How are you now ! My also is same story
Took first RChop but after that i have some skin problem in my arms and and back of the neck their are some small white bubble types spot what to do for this
How are you doing ? I watched you go through all of this on your you tube channel. I was getting treated for cll in 2018. It has come back. Did you stay ok ?
What to do if RCHOP isn’t that effective
I saw my PET-CT scan results 2 days before and it says I have stage 3 non-Hodgkin lymphoma. I was heartbroken and I have appointment with the doctor next week to discuss about possible treatments. Normally I was an athlete. So I'm normally very strong person both mentally and physically, But I can't settle about my situation now after I saw the results. I just want to ask you that Is it curable completely and what was the time taken for you to complete your treatment?
Wow! You just had major pulmonary surgery to remove a mass and they send you home that same evening?? Good God what if you had complications such as a pulmonary embolism or any type of unforeseen complication? Sorry I was just shocked! Glad everything went well. I didn’t tell anyone except my direct family and close friends that I had cancer. People treat you so differently when they know.
Tammy, thank you for sharing your own experience.
One doctor I saw recommended R-Chop, another recommended Benemustine and Retuximab. Hard to choose.
Hi I have the same thing. Iam 56 doing so far good. But it’s hard when I can’t talk to someone about it. I have my days. I was taking chemo but I just chose to stop it.
I WILL SAY A PRAYER FOR YOU EVEN IF YOU AREN'T RELIGIOUS.
Hi there, i am sorry to hear that. How are you doing now?
How are you doing?
I’m 60 Jan 23 had a cough they did X-ray found bilateral pulmonary embolism- blood clots - we’re looking for cancer - March 23 got all clear - swollen lymphnodes but no cancer - Aug 23 back to hosp they apologised I got stage 3 follecular lymphoma cancer after biopsy in neck - had 6 rounds of RCHOp chemo - lost my hair but put two stones on - due to steroids - now on maint injection every two months for 2 yrs - diagnosed as diabetic hopefully I can reverse - but one day at a time it may come back - but can also get another 20 yrs …. I met a 2 yr old girl with Cancer and was waving to me - she passed away few weeks later - so I have no right to be sad or sorry for myself…. Basically wotever
My Grandpa was just diagnosed..:(
I am sorry to hear about your grandpa's diagnosis :(. Sending you, him, and your family hugs. ❤️Stephanie
My 9yr old son had a 4cm cervical lymph node with no obvious sickness, then ran a fever for 6 days on antibiotics and has complained of fatigue and arm/leg weakness. Antibiotics has shrank the lymph node a good bit (still enlarged) so the doctor says it was just an infection and he’s ok. Should I get a second opinion? After seeing the antibiotics shrank her swelling, I’m worried.
He had multiple enlarged lymph nodes throughout neck (both sides but nothing like the 4cm). He’s now starting dry coughs and complaining he can’t clear his throat.
Hi Andrea, we do not provide medical advice so best thing is to definitely consult another professional. However, what I will say is that both doctors and patients have told me countless times that yes, a second opinion never hurts. Best, Stephanie
Andrea please take your son for testing. It could be nothing. But better to be safe than sorry. Prayers going up for your son.🙏❤️
Coffee helps with the headaches!
salutations, The Patient Story. it's a extremely funny video. thanks. :)
How do I get doctor's to listen to me and do more tests than just blood work? I have had swollen lymph nodes in my neck, behind my left ear for 3 years, and now swollen glands in my left armpit and breast, l that haven't gone away. I have been super sick since 2015. It all started with extreme fatigue, then noticed swollen lymph node on left side of neck. Few months later I was hit with extreme dizziness, lightheaded, nauseous, shortness of breath, loss of balance, slurring my speech, memory loss, hair falling out, unexplained fever for years, extreme weight loss, pale face, full body tremors, full body weakness, itchy skin, headaches almost everyday.. the list goes on. For the most part my blood work always comes back normal, so the docs won't do any further tests. I don't know what to do.... I have lost all faith in the medical field.
Camille, first, I am so sorry to hear about your experience in not being acknowledged nor heard. If you don't feel your past/current doctors and/or medical team are listening to your concerns, many patients talk about getting second opinions. We don't provide medical advice, but certainly we encourage self-advocacy! Push for the tests you want and don't stop until you find doctors who will really listen to you. -Stephanie
how are you now?
Be your own advocate. How is your diet ?
Nothing showed up in my husband's blood work. We had to have a biopsy
I'm starting my R-CHOP Chemo journey 6 January 2022. I didn't catch the name of the meds that was used to help the mouth sores. Can someone help with the name?
I believe Mags said she chewed on ice chips to help with the mouth sores. I personally had a tough time with mouth stores after my R-EPOCH chemo and got a ton of cankersore patches to help (the patches were better than the gels for me because it was "set it and forget it" and when I drank/ate, I didn't taste the gel). Here is Mags' link and transcript to her full story, I hope it helps! www.thepatientstory.com/cancers/non-hodgkin-lymphoma/primary-mediastinal-b-cell-lymphoma-pmbcl/mags-b/
Thinking of you as you head into chemo. ❤️ Stephanie
@@ThePatientStory Thank you. I was given ice at my treatment and so far am ok. Thanks for the link.
@@zyepod how r u now
I have stage 3/4 Mantle Cell Lymphoma and on 5/6 chemo. No real reactions to the chemo apart from being tired, hair thinning and no mouth ulcers as I was told to use a prescription mouthwash that has worked. The lymphoma is reducing well so hope for remission. Started around lung, spread to the abdomen and swollen node under arm which is when I went to the doctor. Many tests and two biopsies and scans later resulted in diagnosis, and. chemo 2 weeks later.
I was told to use CORSODYL four times a day as mouthwash. It has worked so far, just a metallic taste afterwards!
I was just wondering when you say a huge mass ( can you please be specific ) what size of a mass is actually considered huge? only because I recently had a Ct done, and I paid Pocket Health So I could view my results of my Scans online and there were over 300 black and white photo's ( scans) for me to view, but for the first time the Radiologist's Summary was not available for me to view. I did notice next to the photo's I kept seeing CT terminology and repeat 2 Cm in each scan from different Angles. I called the GP for results and was told they hadn't received them , Three days went by so I called the CT Dept , the Radiologist said she had signed off on them and sent them herself the same day, yet my GP's nurse keeps saying " They have not received the results". It's now a week later. I keep thinking about the fact too that this was the only scan in all these years where there was no Summary provided for me to read along with viewing the scans and how I am getting two different stories regarding my results. I keep thinking if something was seriously wrong they would call, yet the pain and swelling of my Glands keeps telling me something is wrong. I too live in Canada, shortage of doctors where I live and can only get in every two to three months.
Hi zeuz ziman, we hope you were able to get some comfort in Mags' story. We are not a medical advice platform so best thing to do is to keep advocating for yourself and contacting your doctors. Thinking of you.
The radiologist, or her dept., can probably give you a copy, let her know you wish to pick it up in person. Or, ask could they please mail a copy to you
I don’t understand why we have stat procedures and then have to wait for 2 weeks for results. I’d be sick out of my mind.
thank you for saying this. it makes me feel valid when I was going crazy and I felt so sick waiting for my results. I have cancer 😢 i’m 17 years old just found out two days ago
Stage 4 lepoma cureable ???
Yes, Lymphoma is very cureable,
Lymphoma is very treatable than other cancers
I am having my 2nd chemotherapy ...but my chemotherapy is of 6days continuous ... RCHOP... INAM FROM INDIA... here I think there is long procedure
Kya hua tha bhai apki
Hi Vikash, I had about 6 continuous days of chemo each cycle, but it was called R-EPOCH. Thinking of you! -Stephanie, The Patient Story
My brother in law just diagnosed with Mantle Cell Lymphoma stage 4 a couple of weeks ago. He started chemo yesterday. What his prognosis? Can he be cured?
Hey how is your brother in law doing?
is your brother in law good pls tell me my uncle has the same thing
Hi, My name is Alycia. My mother has been in remission for three years. If there is Any way I can contact this young lady.. God knows I need her to encourage my mother to Just live.. she is living in fear. I totally understand but I need someone that has experienced non Hodgkins to encourage her. I will give a way to contact me I would love of response from her 💚💚💚💚
I m non hodgkin too
@@sheloshelo4884 how are you now
The worst side effect is not hair loss. During my chemo treatments, I didn't see anyone bubbling and vivacious. I'm glad for Mags, but leaves people with an unrealistic view of chemo, what it does to you and the lingering side effects.
Different people respond differently and she’s very young. It’s good to have an honest perspective out there; there are enough chemo horror stories on YT, a more positive perspective doesn’t feel like a bad thing. She mentions being couch bound for a long time so it doesn’t come across like it’s easy.