Mantle Cell Lymphoma Survivor Shares Story | The Patient Story ft. Tim Holyoake | The Patient Story

[@rosscorr]

Just found this but I have just been through this and the protocol Tim is describing is exactly what I had here in Sydney at the Kinghorn Cancer Centre this year 2023.

[@macmad6959]

I hope you are keeping as well as can be expected on your journey back to health.

[@anglophils645]

A head and neck MRI is awful--the sense of claustrophobia and the knocking noise just about drives you crazy! The head phones don’t do much to mitigate the noise. In my case, the technician asked me if I wanted a Xanax before we began the scan, but I declined it, because I generally do not have anxiety or claustrophobia. But ANYONE is going to feel claustrophobic with that MRI helmet on. My strong advice is take the Xanax before the scan if it’s offered, I certainly shall, if I ever need another head scan. As described herein, a head and neck MRI takes about twenty minutes. My technician planned a break for me in the middle, so I was pulled out of the machine, to sit up, relax, and breathe deeply for a few minutes, before going back in for the second ten minutes. That was extremely helpful, having the short intermission and break. I made it through, but I’ll definitely take the Xanax next time!

[@robertswinburne3973]

Thanks for this - I have recently embarked on this journey myself.

[@ThePatientStory]

Robert, we are sending you our best wishes and hope Tim's story will be helpful. For our full MCL story library, feel free to check thepatientstory.com/cancers/non-hodgkin-lymphoma/mantle-cell-lymphoma.

[@robertswinburne3973]

@@ThePatientStory bookmarked it - thanks

[@leetuffin]

A great interview, I have just started my treatment for MCL and found it extremely useful and interesting, best wishes Tim

[@ThePatientStory]

Hi Lee, so glad to hear Tim's interview helped! We just published Bobby's story, as well. Feel free to check his out :). The entire collection of stories is here: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/mantle-cell-lymphoma/ (still updating Bobby's on the site but his videos are up!)

[@leetuffin]

@@ThePatientStory Great I will check it out, I have been keeping a video journal since diagnosis and it really helps

[@garyfritz4709]

Tim mentioned the vanishingly small probability of having two people who knew each other having MCL. Unfortunately I can top that. My father died of MCL 20 years ago, and I was diagnosed with MCL at the end of 2019. Two cases in a family of five.

[@macmad6959]

Sorry to hear Gary, i hope your trearment plan is going well.

[@garyfritz4709]

Yes it is, @@macmad6959 , thanks! Ibrutinib & Venetoclax put me into full remission. 😃

[@macmad6959]

@@garyfritz4709 i am in hospital now mate, had chemo yesterday, first session, but am looking forward to finish the treatment in April, stem cell stransplant, take care buddy stay safe .

[@macmad6959]

@@garyfritz4709 great news mate, so.tou are leading a normal life just taking maintenance drugs.

[@garyfritz4709]

@@macmad6959 yes! I was on “house arrest” for a few years, hiding from Covid. Covid is Bad News for us lymphoma kids. But with the Evusheld shot I’ve been able to be around people pretty normally. But now there’s a new variant that totally ignores Evusheld, so I might have to go into hiding again… ☹️

[@bimlagurung5789]

Thank you ❤

[@kevanhubbard9673]

I didn't realise that that was was so rare and I often mix it up with Marginal Zone Lymphoma probably because they both begin with M!

[@reneelanier3475]

Much better format!!!!!! 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

[@ThePatientStory]

Renee, thank you! We started shifting to our founder also showing her face during interviews the last few months. She had wanted to make sure the focus was only on the person sharing their story but we're glad this format resonated with you better. If you have more feedback about what you'd like to see on our website (thepatientstory.com), please let us know! thepatientstory.typeform.com/to/IiHbtO

[@reneelanier3475]

It was easier to watch and just flowed so much better!!!! Great job! Such a powerful channel for help!!!!

[@ThePatientStory]

We appreciate the feedback :). Thank you!

[@mlr6530]

Thank you!

[@ThePatientStory]

Michael, thanks for watching! If you'd like to see more MCL stories: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/mantle-cell-lymphoma/