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What are the next steps after a mantle cell lymphoma diagnosis?

As a rare and often aggressive form of lymphoma, what are the next steps after diagnosis for patients diagnosed with mantle cell lymphoma?

  1. Hi Pamela,
    I am not sure if this is you diagnosis but it is mine. I can only tell you what I did but ultimately everyone will choose a different path. I was diagnosed with MCL in 2013. Because of all the research I have done, I decided I would not do anything unless it was just treatment to keep me comfortable.
    I cruised along 4.5 years with minimal symptoms. I traveled with my husband, friends and children as much as I was able while working as an RN at our local hospital. I have seen a lot working in the hospital and it became my goal to stay out of there.
    My cancer just started behaving in s more aggressive manner lately , requiring Radiation therapy, which knocked it back quite a bit. There again all out patient therapy. I am so grateful that I took the course I did and I have really lived my life to the fullest. I know myself and I know I would not of been able to go through all of the hyper cvad BMT and Rituxin maintainence therapy. I could not of dealt with the lack of control of staying in the hospital or the separation from my family.
    MCL does not do as well as some cancers in terms of remission, so for me it wasnโ€™t worth it.Everyone has different life circumstances and they just have to decide if they are really able to put of the fight. Best wishes, I hope this was helpful💚

    1. You are so correct... everyone has a different go of dealing with their circumstance. I'm so happy you're living your life to the fullest, despite the trials. Keep at it and best! 😀

  2. I think of you all the time noting how brave you are!!!

    1. My MCL was very aggressive and within a week of being told the diagnosis I was meeting with a specialist (that's what I call him, he's both a Hematologist and researcher) in Rochester MN ( about an hour away) since none of the clinics near me had any experience with MCL so that he could figure out the best plan of attack. He explained everything to me in normal person talk and even drew me a diagram. Then my health insurance refused for me to be treated there even with him intervening for me but he still watched over my treatments and kept in contact with the local Dr's.

      1. Iโ€™m spending you positive vibes๐Ÿ’žโœจ๐Ÿซ‚๐Ÿซ‚๐Ÿซ‚๐Ÿซ‚๐Ÿ’ช๐Ÿพ

      2. Same here I met with my MD and a port was installed the next week and 3 days later my first chemo was in process -

    2. I was blessed with remission a year after diagnoses but sadly it returned this February. Been taking Imbruvica since then and will be going next month for re-staging to see if it's working or not. So fingers crossed that it is. These days I just take it day by day and I thank God for my Shih Tzus because without them I don't know where I'd be. They depend on me which gives me every reason to get up every day. And I still have my hopes and dreams that someday I'll get to do one or two things from my bucket list.

      1. Having love and being loved from family, fur babies, or friends can move mountains โ›ฐ! Iโ€™m so happy you have motivation, hopes, dreams! I hear ๐Ÿ‘‚๐Ÿพ passion, strength, courage, determination โœจ๐Ÿซ‚๐Ÿ’ž๐ŸŽ‰

      2. Pets are great - no judgements they just want to be with you. I think they know when you are down and there is just something about the way they look at you or snuggle up next to you that makes the day a little nicer. l

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