My RARE, AGGRESSIVE Lymphoma Story - Michael | The Patient Story

Michael started experiencing major exhaustion and terrible night sweats. After seeing his family pediatrician for blood work, he was referred to a specialist for a bone marrow biopsy. At first, they had no idea what kind of cancer Michael had, but the doctors were preparing him for chemotherapy treatment any way. A few weeks later, Michael was diagnosed with Hepatosplenic T-cell lymphoma, a very rare and aggressive type of non-Hodgkin's lymphoma.
He shares how he underwent a life saving bone marrow transplant, how he's still dealing with graft-versus-host disease (GvHD), and the treatment he is still on.
#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #rarecancer #bloodcancer #lymsm #exhaustion #nightsweats #nonhodgkinslymphoma #gvhd
The Patient Story:
The Patient Story is led by a dedicated team of medical, editorial, and video experts, committed to authentically portraying the cancer patient experience. Sharing your story holds transformative power, culturally and personally. We handle each narrative with utmost care, compassion, and scientific rigor.
Our editorial process adheres to the highest journalistic standards, ensuring medically researched, vetted, and fact-checked content. Backed by experienced medical professionals, we offer insights into the latest medical advancements.
Beyond patient narratives, we provide comprehensive coverage of cancer news and medical resources. From symptoms to clinical trials, insurance, finances, and support groups, we offer guidance in a humanized manner.
[Video Chapters]
00:00 Introduction
00:52 My first symptoms
02:43 Undergoing a bone marrow biopsy
03:28 Getting the diagnosis
04:40 My treatment plan
05:15 Undergoing a bone marrow transplant
06:40 Doing radiation and chemotherapy - What helped me with side effects
07:56 I developed graft-versus-host disease
08:58 Living with GvHD
09:30 What treatment I'm on for GvHD
10:13 Survivorship
11:40 My biggest advice
12:16 You should never feel alone!
Join Our Community:
Sign up for our FREE website: thepatientstory.com/
Facebook: / thepatientstory
Instagram: / thepatientstory
Twitter: / patient_story
Tik Tok: / patientstory
The interview has only been edited for clarity. The interview has only been edited for clarity.
How I Found Out I had a RARE Cancer - Michael | Hepatosplenic T-cell Lymphoma | The Patient Story
• My RARE, AGGRESSIVE Ly...

[@anaferguson5135]

Nothing like a MOM to take care of her child! I hope that you stay in remission and get rid of this cancer. You are very brave! TYFS your story with us.

[@kaia0821]

I can’t imagine a doctor telling me not to look something up. I’d be on google asap.

[@jodythi1]

I work in oncology in Miami and I also specialize in leukemia and lymphoma. I’m praying for you!

[@SculptExpress-gv8jp]

My friend had the bone marrow transplant 30 years ago for the same illness and she’s been fine ever since. The recovery was tough, but she slept a lot and ate healthy home made food (soups, salads, meat, fish, fruits..) and it got better🤞. So, now that they have even better treatments, you’ll be fine 🙏🎈❤️

[@19th-Nervous-Breakdown]

Exhaustion, night sweats and fever are all symptoms of lymphoma. Good luck to you, young man and, hopefully, you are in a permanent remission. God bless. 🎉

[@terismedley7467]

A diagnosis of a very rare cancer makes everything more difficult. My husband was diagnosed with a rare cancer (at the time he was diagnosed there were 51 known cases in the world). Finding the right oncologist with a rare cancer is a challenge. I can't imaging how we would have navigated this without the tools available on the internet. Blessings to you and your mom!

[@lillyrocks82]

Hi! How did he know he had cancer? What were his symptoms? I hope he's doing well. ❤

[@terismedley7467]

@@lillyrocks82, he noticed a small, painless lump in his neck while shaving two days before we were leaving on vacation. We decided that if it was still here when we returned he'd have it checked. At first they thought it might be lymphoma of some kind but after surgery and pathology he was diagnosed with Follicular Dendritic Cell Sarcoma. Interestingly enough, four years later when he was at a follow up appointment on the FDCS, he was also diagnosed with Chronic Myeloid Leukemia. He's doing well now!

[@katarzynabaginska8379]

Michael, what a strong, brave, smart and wonderful guy you are🫶Sending lots of positive vibes to you and your family❤

[@minnesotagal507]

Good for you, I am a survivor too at 67 .

[@mikebel74]

What a beautiful, powerful soul you are. You have the wisdom of an 85 year old at 20. That’s rare. I’ve battled the beast twice, and I’m 67. At 19, I hadn’t a card in the world. All the best to you and your loved ones. You’re a giant among men. I hope and pray you’ll beat this and love a long, healthy, and fulfilling life. I have a feeling that you will.

[@merryponidjan7753]

Having a good mom is truly blessing for those who have unfortunate life. Happy for you and your mother. Keep strong 🥰

[@SanzL1]

Your mom is a real cheerleader! Bless her heart. . . and bless yours! This is a trial of trials. I hope and pray that one day all of this will be better.

[@renatevolckel3312]

Gesundheit und Glück wünsche ich ijnen

[@user-fb8uw1ui5x]

Michael, I was diagnosed with Grade 2 uterine Cancer and I had a hysterectomy with a Bso and did radiotherapy instead of chemo. Now I'm on a mission to help others. God speed 🙏❤️🙏❤️..

[@doodleacademy]

What a strong, brave, and delightful young man you are Michael. Thank you for sharing your story. Blessings to you and your angel of a mom 🙏

[@sarahA289]

Prayers for you. I am the mother of 2 boys. They are now 23 and 25. We have had our own struggles as well. I can relate to the bond that you and your mother share. Take care.

[@anastazijamuller5278]

Sie sind wirklich ein starker junger Mann und haben eine wunderbare Mutter. Beiden wünsche ich von ganzem Herzen alles Gute.

[@NickUncommon]

Mosg lmportant quote "Its not easy, going through cancer, its not just going to be over" Most outsiders (the ones who do not live with a cancer diagnosis) think, they can compare it with a bad cold, which leaves nothing behind unless post viral malaise, if you are unlucky. A body dealing with cancer and the treatments is no walk in the park, that leaves you with just a memory.

[@luvfunstuff2]

My nephew survived a grueling battle withblymphoma too. It's been a long journey but he's still progressing. You are an amazing soul, thank you for sharing your journey and the wisdom you've gained. Sending you healing hugs 💝

[@ny_njtrailrunnert926]

You hit on some very important topics that are not discussed a lot in the cancer space, such as the PTSD, and physical changes. I could not imagine how difficult this must be for you at times. Sending big healing vibes your way, keep up the amazing work of spreading awareness.

[@rogermoore2293]

Wishing you the very best of luck from England Michael, you're an inspirational young man. Thinking of you and your mum and sending you love.

[@donnae9566]

Your mum absolutely ADORES you. It's clear for the world to see. You absolutely have to stay well.

[@stellacontreras7740]

Prayer, I lost my mother, and two sisters to cancer. A one older sister is a lung cancer survivor . I'm doing good right now At 67 years old. But Cancer is always in back of my mind. Great mother ❤️ young man. Prayer for strength from our Lord.

[@stephmartin1148]

Oh bless you and the loss of your mother and sisters to cancer!! ❤️ Prayers you stay healthy!!

[@-MaryPoppins-]

And may it stay back there!!❤️

[@crystalclink]

What a wonderful and well spoken young man and awesome mother!

[@renataloren2384]

Thank you, Michael for sharing your story. Sounds like you really went through some hard times but it looks like you have a good support system. I’m glad you’re cancer free for the past three years and I pray that you will be cancer for the rest of your life. Your still a handsome man and I wish you so much happiness and love in your life! God Bless you always!! 🙏🏻🙏🏻🙏🏻💖💖❤️❤️

[@Ceerads]

Thank you so much for this intelligent, informative, caring video that will help so many. I’m so sorry you went through and continue to go through such an ordeal, especially at your age. What you said about how it is once one has had a cancer is so true: physical after-effects of treatments; PTSD; always aware in the back of one’s mind that it can recur or a new primary can develop. I’m a long-time breast cancer survivor much older than your mom, and everything you said here rings true to my experience. I wish you and your mother all the best. P.S. Seeing how you ate your pizza slice, I knew you aren’t a New Yorker or from New Jersey! We fold. 😂

[@pil-it7306]

Keep fighting brother. You are very lucky because your mom imwas with you in your cancer journey. God is with us always ❤

[@greeneyedcat717]

Your honesty about your cancer journey and survivorship is truly inspiring and there are life lessons there for all of us, no matter our situation. You and your mum are a force for good. Thank you for sharing your story Michael.

[@kkormanik]

My husband was diagnosed in July 2020 with Large B cell lymphoma. It was a rough hall with his chemotherapy 4 days non stop IV’s in and out of the hospital for 4 months lots of hip biopsies, blood transfusion, platelets transfusions because they could never stay up everything that needed replaced was. Lots of trips to the hospital in between to Shadyside hospital in Pittsburgh and the Hillman Cancer research clinic which was supported by Mario Lemieux wing when he had his blood cancer. My husband suffered a relapse after exactly 3 years in remission. Had his appendix removed and are watching his lymph nodes in his lungs. Had 3 months of Chemotherapy again and deemed in remission again in January 2024. You are right exercise is key and lots of prayers. He has bad neuropathy in his hands, feet and legs but he’s alive. God be with you in your cancer. journey and

[@TaciaDC]

Thank you Michael for sharing your story, and thank you to this page for featuring Michael’s journey with T cell lymphoma. My father (66 y/o next month) is currently being treated for peripheral T cell lymphoma. Sending prayers & healing energy your way ❤

[@tatianaschoenfield9819]

Congratulations on your successful fight with this cancer. It was a tough road. I wish you health and well-being for your life. Regarding the nausea, a family member started eating only spicy Indian and Chinese foods, which helped during chemotherapy.

[@MartinKerr-uq8yg]

Thanks for sharing your story. You rock 👍🏻😃

[@denisesalles7248]

Damn you've been through a LOT. Much respect to you and your Mom as you navigate this challenge.

[@dianareddell1496]

That’s such a great story. Thank you for sharing it and spreading hope and strength to others battling cancer. ❤ 🙏 for your continued success and happiness.

[@fawnlengyel1725]

You are a strong young man. You have been through so much! It's beautiful to see how strong an advocate your mother is for you. May you have a life of good health from here, my fellow survivor.

[@cheryllieberman9339]

Wow. Youve been through a lot for someone so young. My heart goes out to you ❤❤❤

[@Gengingen]

You are not only brave but full of great character. God bless you with continued good health & cheer.

[@user-ef4df8xp8p]

A handsome, sweet and smart guy.....Stay strong.

[@kcirtap8120]

Thank you for this post …you are wonderful!

[@seanscott685]

Strength and healing to you Michael 😊

[@GinaHolmes]

God bless you. Love your honesty.

[@joycepayne3505]

My goodness young man. Sending hugs and prayers for healing

[@sallymccoy6286]

What a brave young man you are. Thank you for sharing your cancer journey with us. Especially, with the young fighters as yourself. You give hope and strength to both patients. Drs and parents with your heart and encouragement I hope your cured or at least in remission at this post date of 4/22/24

[@bojan353]

this was powerful. thank you for sharing.

[@lesliemorris5695]

Prayers for you!!! You are blessed to have a mom like yours!!!

[@junedolson1642]

I'm so happy that you are on remission & you have your wonderful loving mom.

[@wendycampobasso4351]

What a wise young man! God bless your heart! ❤️

[@user-dx4io5yg4l]

Your amazing for sharing your story❤❤❤

[@sailboatrn7372]

Thanks for sharing your story!!

[@emmainjapan]

Bless you -- may you thrive.

[@nancydavieau]

God Bless you Michael - you’ve been thru so much - - take care

[@michellethaler1832]

Your team - mom and you - are the one of the most incredible units out there on the internet. I wish you and mom the best of the best. You are amazing.

[@jillcoe4695]

Excellent attitude. Prayers and hugs to you and your family.

[@TON-os4ev]

Your family has been through a lot ❤

[@user-hx6nt9ju2i]

I have seen a lot of videos from doctors here on KZbin explaining how to starve Cancer.I wish you all the best God bless you

[@nancykistner7167]

Thank you for sharing. You are so wise and helping others is a gift you are giving. ❤❤❤

[@Jones2816]

I have followed Michael on Instagram since the beginning. You have such a big voice for others going through the same thing.

[@debishaw9355]

God Bless you! You are an inspiration!

[@ruthgoff3540]

God bless you. You've been through a tremendous amount of stuff for someone so young. ♥️

[@jackzfun]

What an amazing and inspiring story. Thank you...

[@paulinearnold1801]

Good on you. Well done. You’re right, it’s never really over. You’ve definitely made me feel better as i sometimes feel bad that i don’t feel more upbeat since my cancer experience. You’re a wise young man. Wish you all the best

[@Ceerads]

We should feel what we feel: upbeat, downbeat - whatever. I, too, am a cancer survivor. As Michael said, cancer leaves a deep mark, physically, emotionally, and mentally. Be well.

[@sandradalessandro2935]

You. Are just amazing. But so is your mom. God. Bless you both!!! ♥️♥️♥️♥️♥️

[@brooks6348]

Thanks for sharing. You have taken something terrible and handled it with grace. By sharing your struggles you are giving hope to others. Best wishes for future healing!

[@PC-dc1kv]

You are a very wise young man. You have acquired more wisdom and grace in your few years than many people have in a lifetime. I can see the love and understanding in the eyes of your mom and you. God bless you and your family as you are a blessing to many. ❤

[@sueu6263]

Keep the positive vibe💕 Wishing you the best , I’m going through my own cancer journey 💕

[@Ceerads]

As a sister cancer survivor, I wish you all the best.

[@Kbe986]

Michael and mom! That is so cute!

[@ilovesketching1]

You are a trooper your amazing your strong your brave NOOO YOUR A WARRIOR!!!! May the Lord extend his healing hand on you and draw you unto him self.

[@tracyk9174]

Sending you love and strength . Wishing you all the best . And thanking for sharing your experience to help others . God bless you and your wonderful family❤️

[@LS-lq1pc]

May God have you in His grace!

[@HopeKrakowski-hu8wh]

You are beautiful!🥰 & your mom too! Thank you! 🙏🥰🕊

[@Blountbabe54]

Wow! I am amazed at your maturity and wisdom at such a young age! Thank you for your openness and candor. Your platform is important, so maybe that is the lesson you have been given. I pray that you continue to get stronger, healthier, and kick cancer's butt!!! And, you've been blessed with an awesome mother!!

[@amybusch9253]

Thank you for sharing your story and detailing your good fortune with finding a donor with stem cells to ensure your future excellent health. Many people will learn from your experience! ❤

[@lisaruple9880]

I am praying for you!!!

[@gypsyspirit5615]

What an inspirational young man you are Michael. I will pray for you and keep watching your content. Bless your mum for being by your side throughout this entire journey - I have 3 adult children whom are my whole world, and would do exactly the same. You are looking very handsome and well especially after everything you’ve been through. Thank you for sharing your story to educate and support other families going through this. I wish you blessings of health & happiness. ❤ Love from Australia.

[@user-pu5ys9he1z]

God Bless prayers always 🙏🏻❤️

[@elainesagoes6089]

Stay strong

[@DCFunBud]

You mom seems so nice.

[@davisholman8149]

Your strong athletic body is what saved you. Those muscles can come back when your body is totally ready! You are still a handsome, well spoken young man - best wishes that the cutting edge treatment you are receiving gives that wonderful body every bit of help it needs. Thank you for sharing.✌🏾😎🌵Scottsdale, Arizona

[@gretchen2428]

God bless you 🙏 ❤️

[@gingin1050]

😢. Smart child❤

[@splash6427]

🙏 ❤️ 🙏 For You Always & Forever

[@user-fb8uw1ui5x]

I'm praying for you Micheal 🙏❤️🙏❤️...

[@susanmonty791]

You can feel and look good and still have cancer. That was my story

[@LLS710]

This was good.

[@lisalisams]

I too was just diagnosed with a very rare aggresive cancer. They say less than 1% of people get it. I think its called primary splenic diffuse large b cell lymphoma non hodgkins w/ bulky disease in all the large tumors that have taken over nearly my entire spleen . Chemo starting next week 😢

[@stevengower]

If a doctor says don’t Google it or look it up that means you do go look it up lol

[@paulnegro8383]

Be careful! A friend of mine was cleared and rang the bell. 3 months later they found cancer in his lungs and he dies two weeks later during the night unexpectedly from a clot.

[@-MaryPoppins-]

That’s terrible. But cancer patients don’t need anymore negativity. They know the statistics.

[@FlaGrown1955]

My son got myocardits, and he has PTS and needs therapy. He thinks every little thing on his body is going to give him myocardits again or he has cancer.

[@DCFunBud]

3:32. Was the diagnosis "Apollo splenic T cell lyphoma" or Hepatosplenic T-cell lymphoma? Never mind. I read the caption.

[@judymastrogiacomo9204]

🙏🏻🕊

[@deniseb2571]

🙏

[@catherinealexandrian9927]

❤❤❤❤

[@billieforrest678]

❤❤

[@barbaraminto6709]

❤ UK ❤

[@ericahalmai8490]

Did you get the vax? How many ..😰👿. I wish you all the best for your & your mum, you will get through this 🇦🇺🍀🙏🌈

[@leo0986]

Can someone share his YT channel please?

[@michelles9897]

🤍

[@Starfish2145]

Why on earth would a young healthy man get this? Doesn’t seem right

[@ruffledfeathers8716]

There's a lot of yound people getting stage 4 cancers these days. The doctor's are baffled 🤔

[@tigerspiritjourney]

How many covid jabs did you get?

[@ruffledfeathers8716]

It only takes one shot of MRNA to reprogram your body sadly 😢