Getting Diagnosed with Mantle Cell Lymphoma | Jason’s Story | The Patient Story | The Patient Story
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- Опубліковано 28 чер 2024
- It started with a rash on his arm, then grew into rashes everywhere. Jason was told he was dealing with different things and told to use different soap. Soon, he realized it was beyond what hew as being told.
Thankfully, after some blood tests, one doctor told Jason it might be something “rare.” After more procedures, it was confirmed: he had mantle cell lymphoma, one of 70 subtypes of non-Hodgkin lymphoma.
Hear Jason share everything from bone marrow biopsies to figuring out what treatment he’d pursue. Thank you, Jason, for sharing your story with us!
In this Series: Jason shares everything from first symptoms and diagnosis, through deciding to go into a clinical trial instead of standard chemotherapy, and impact to his day to day life in our three-video series. Thank you, Jason, for sharing your story!
Videos Series:
1) Getting Diagnosed with Mantle Cell Lymphoma: This Video
2) Mantle Cell Lymphoma Treatment (and Clinical Trial): • Mantle Cell Lymphoma T...
3) Living After My Cancer Diagnosis: • Living After My Cancer...
Full story & transcript → www.thepatientstory.com/mantl...
The interview has only been edited for clarity.
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Contents of this video:
00:00 - Intro
00:45 - Tell us about yourself
02:31 - What were the 1st symptoms?
06:46 - Describe the skin biopsy
10:07 - Surprise bone marrow biopsy
11:24 - The impact of a sudden procedure
12:57 - Describe the PET / CT scan
19:42 - Describe the bone marrow biopsy
24:09 - Processing the cancer diagnosis
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#thepatientstory #patientstories #cancerstories #cancerpatient #cancersurvivor #lymphoma #nonhodgkinlymphoma #mantlecelllymphoma #rarecancer #bloodcancer
He’s describing my experience almost exactly.
Jason, thank you for sharing your story! I have just started to look into support groups and find other people who have MCL, and I’m amazed at your story and diagnosis. I’ll share mine with you, for the sake of commiserating and sharing information…I am a 40yo female diagnosed with stage 4 mantel cell lymphoma in February of this year. My lymphoma presented as persistent colds over the course of several months last summer and fall that wouldn’t resolve, followed by a routine check up with blood tests that showed moderately severe anemia, thrombocytopenia, myelocytes and metamyelocytes. My local oncologist insisted my blood test results were reactive to a previous COVID infection; meanwhile, I required blood transfusions and had severe shortness of breath, fatigue and heart palpitations. A hematologist/oncologist friend of my husband’s recommended we check into the hospital for testing (bone marrow biopsy and aspiration, lymph node core biopsy) and to get a second opinion elsewhere. We followed her advice and diagnosed the MCL. I’m now halfway through my treatment plan, which started the second week of March and should finish the last week of June. I’m receiving 6 rounds of R-HyperCVAD chemotherapy, hoping to be in remission afterward and avoid a stem cell transplant. I am glad you found a treatment plan that works for you and your lifestyle. I’m praying for you, that you’ll be in remission when all is said and done and not have a relapse in the future. God bless you.
Thank you for sharing your own story! Thinking of you as you finish your treatment ❤️
I am searching for support groups for my daughter diagnosed with MCL in January. Thank you for sharing your story.
I’m praying for the both of you as well!! Thank you for also sharing your story, I’m on my way to see a Hem/Oncologist this month and these videos are very useful
How are you doing now? I hope you are well and was seeing if you could share an update.
Hello, how are you now? Did you have a transplant?
Fellow MCL patient here. Diagnosed at age 61 in January 2021. I have been through SCT. Currently in remission. Sitting at Moffitt Cancer Center waiting for my quarterly Rituxan infusion. Wow. Very similar stories! Thank you for sharing!
We all react differently. It is the fight that shows our strength.
Bob, so glad to hear you are in remission! If you are interested in sharing your story, please email me stephanie@thepatientstory.com. Would love to get more MCL stories up! -Stephanie
Hi, nice and informative video. Can you tell me how old was this patient when he was diagnosed with MCL?
Jason - first of all I am so sorry that you are going through this.
I am a retired nurse and I can understand your feelings about having a bone marrow transplant.
If I could suggest I would have a discussion with your oncologist, explain your feelings, + ask if it would be possible if you could have a bit of Versed before + during the procedure.
It is given IV + is given to patients before certain painful procedures.
It also causes patients to temporarily not remember the procedure.
I know that this isn't the usual "protocol" but I always treated every patient as unique + at times breaking the protocol for the benefit of the patient is the best policy.
Starting an IV + giving a medication really takes only a few minutes but to the patient it can mean so much.
Thank you for the suggestion!
Wow! Thanks for sharing your story, you are in my prayers my friend!
NHL itself isn't an uncommon cancer but apart from DLBC and Follicular all the subtypes are rare.I have one of these subtypes called Mycosis Fungoides which is a T Cell Lymphoma and had reached stage 2B by detection which is the beginning of the advanced disorder and it caused me to have an amputation.
If you would’ve went to the ER to complain about the hives, you would have sat there for 12 hours and they would’ve said “take a Benadryl and go to you Pcp tomorrow.”
Wow. My friend’s husband dealt with this and likewise it was a very difficult ride for him. But he had an amazing team of people, including his loving wife, of course, that rallied for and with him. His symptoms were swollen lymph nodes, swollen belly and nausea. As far as the hives go, I went through a two year period where I had chronic hives. They would start in the early afternoon and get worse as the day went on, then clear up. I never really knew when they would show up. Ultimately it did help when I switched to milder soaps, but at the same time, it wasn’t consistent. My GP was no help whatsoever. I was also having some digestive issues and I honestly did worry it was cancer. The long of the short if it is I was ultimately diagnosed with Crohn’s. I think hives is just a way for the body to start sending alarm bells that something is wrong. Luckily, they have not surfaced again. Thank you, Jason, for sharing your story. Navigating the system as a patient is so frustrating!
My doctor didn't even give me the option to have it done in the office he said, "You'll be going to the image Center for that so you can be put out." Easy Peezy no pain
Mantle Cell lymphoma (MCL) is an aggressive, rare form of non-Hodgkin lymphoma (NHL) that arises from cells originating in the “mantle zone.”
My husband died at age 43 from chemotherapy. He had previously been diagnosed with non-Hogkins lymphoma. At the time of his death, he had no cancer whatsoever. His last chemo round was a double dose… that was what allowed the E-coil to go crazy and (to be blunt) dissolve his intestines. I would never have chemo or radiation if I had cancer, that is my opinion. Especially after how the medical establishment lied to us about “covid”. What a have that was.
I am a 29 year old Female and lately I’ve been experiencing drenching night sweats for weeks, had a rapid/ unintentional weight loss in the beginning of 2020 over a short period of time. I have been vaccinated but had Covid 3 times. I am very fair skinned, bruise like a peach, and am prone to moles and vitiligo. I have been researching these symptoms and then came across MC lymphoma and took a closer look at those lymph node areas on my body. I do have some lumps under the skin which I never thought anything of… and I have been very sick the past few days unable to eat enough food. Everyone thinks I am stressing myself out/ or that it is depression but I feel like something is very wrong
Just read this and wondering if you got yourself checked out lovely? My best friend has just been diagnosed with MCL and she thought a lot of her symptoms were stress and depression. Always best to speak to your Doctor x
Any update?
How’s your friend doing?
I'm on my 4th type of chemo,
it's not that bad, and with multiple myeloma I have bone marrow biopsies all the time
I too had cancer, over twenty years ago. It scared the hell out of me. I was crying all the time but I never tried to take it out on the people who were trying to treat me. You made things much worse for yourself. Try a little of gratitude. It's a calming and wholesome state.
Hello,
I am glad you’ve been healed and free of this for so long. If you don’t mind, was yours MCL also?
Sounds like your medical team were very poor on communication, I have had Mantel lymphoma just over a year, My medical team have been brilliant kept me informed all the way . Here in the UK can't speak highly enough of the NHS. Good luck with your treatment
I'm quite surprised that you have to find your own surgeon for this because where I live in Boise Idaho, they do everything for you... they know who to call and they will call them ...they will make the appointment for you and then they will call you when they have you scheduled for it.
That rash looked nothing like hives.
Been through all this. Had no surgery. My spleen pain caused me to go to the hospital. After chemo I’m clean now. Refused stem cell transplant for now.
Hello, how are you doing now?
My husband was diagnosed with MCL after having swollen lymph node on his neck for about 4-5 years. He never had any symptoms…
Please, I’d appreciate anything you are willing to share.
I’m just learning about this and I am torn after reading about how aggressive this is plus no cure.
@@CarlyNY-ob9vsHi Carly, I’ve been diagnosed the same, been told yesterday it’s stage 4. I’m 39. I will have only 4 cures of chemo + stem cell transplant. I have been told that staging is different in lymphomas so it should still react to the treatment. In fact, they told me we should see a change already after the 2nd cure. It’s scary but we have to get into treatment and just nail it. Step by step
My son has had hives for awhile now and no one knows what it is. This makes me nervous.
We are not a medical site - if you have concerns, definitely reach out to a medical team and have your son checked out. Wishing you the very best. -Stephanie
So the CT scan here was useless ?
No doctor should just tell you that you're having that procedure right then on a invasive procedure like that. They scheduled me for an imaging center which is where they send you for a colonoscopy and they put you out and then they do it and you don't even remember easy Peezy its awful in the office because they won't put you out, and they will have somebody holding your legs so you can't move it's very barbaric! Plus, it scares the bejeebers out of the patient when they hear the doctor asking someone to hold your ankles to make sure you don't move!
Why did it take so long for blood testing to show cancer…? Seems like that’s the prime test for the disease.
38220, 38221 was performed on you? When I worked for the Oncologist/Hematologist that was the procedure code they used. It's very painful. 🤕🤕🤕🤕for someone to tell you that over the phone is a disgrace, you never tell a patient anything like that over the phone, they bring them in the office and discuss it with supportive staff as to not leave the patient alone. I am shocked.