Mantle Cell Lymphoma Treatment (and Clinical Trial) | Jason’s Story | The Patient Story

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After watching his mother struggle with traditional chemotherapy when he was younger, Jason was pretty set on avoiding that route at all costs if possible when it came to treating his mantle cell lymphoma.
He ended up going on a clinical trial that was testing a certain combination of drugs against mantle cell lymphoma: acalabrutinib + lenalidomide + rituximab.
But his story is about much more than the treatment regimen and side effects. In this segment, Jason shares in-depth the experience of being in a clinical trial, from having to take surveys, to journaling, not having to pay for treatment, and so much more.
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: • Getting Diagnosed with...
2) Mantle Cell Lymphoma Treatment (and Clinical Trial): This Video
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
00:31 - Describe the treatment regimen
02:22 - Describe the side effects
04:13 - How helpful was the caffeine / coffee?
06:38 - Describe the fatigue
09:24 - What helped with the fatigue?
11:48 - How do doctors monitor your Mantle Cell Lymphoma?
14:01 - Getting test results as part of a clinical trial "pod"
16:10 - Describe the blood test schedule
17:57 - The difference in taking pills vs. chemo infusion
20:58 - Adhering to a clinical trial schedule
23:00 - What's the process of getting into a clinical trial?
24:11 - Paying for a clinical trial
29:35 - Your clinical trial result vs standard of care results
34:35 - Describe how you have to journal during a clinical trial
37:45 - How many people were in the same study in you "pod"
39:17 - Message to patients unsure of clinical trials
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Опубликовано:

8 авг 2024

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Комментарии : 6

@suzannemcnamee9385 Год назад

Hi Jason, Your story has been so inspirational and uplifting to me. I, too have MCL. Am on my second line of treatment and in a clinical trial out at MDAnderson in Houston, Texas. It was one year this past November that I began, and the course of oral pills had me in clinical remission after four months. A lot to be grateful for. So much of what you said is exactly what I've told friends and family. I will continue to keep you in my thoughts and hope that we, as well as everyone else with this rare blood cancer, continue to succeed and stay cancer free. Thanks for sharing your story. Suzanne

@CvvbZxc-ed1os Год назад

If I may ask, were you in a watch and wait period before starting any treatment, if so for how long? What pills did you take or are still taking,, and what is the clinical trial at MDAndersond that you are on. I too have MCL since 2020(when I first was diagnosed) and had a consultation with a Dr. at City of Hope. I was told and I read that watch and wait is an option if not more severe symptoms are present. Thank you.

@judepalmbeach 5 месяцев назад

Stephanie you ask the best questions…this was a good one !!

@stephengillman5087 10 месяцев назад

Hello Jason , I was diagnosed with MCL in 2009, I completely agree fatigue is a major issue, I found it very helpful to build rest into my daily regime, we all eat regularly, rest regularly, even if feeling ok , don’t skip the rest . I found very slowly over time my fatigue was diminishing, I gradually reduced my rest periods, in my experience, it’s important not to overreach as one goes backwards. Stephen Ireland.

@thisismyname007 Год назад

MCL is not one disease. Pathologists can identify patients with several different tweaks in the genome of the MCL cells. Major thing is mutations of the P 53 gene. Another is a SOX11 only presentation. Etc.