mantle cell wait and watch

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My mother who is 74 was diagnosed over a year ago with mcl. She is doing the wait and watch. I was just wondering if there is any recent people out there who have been doing the same wait and watch and for how long. I am new to this forum and not very good at using computers so I apalogize in advance if this isnt in the right post section. There is so much stuff on mcl on the internet that is horrible but alot of it is very old info. Thanks

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  • illead
    illead Member Posts: 884 Member
    edited January 2017 #2
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    Hi Ceili

    I have sent a private message to you in answer to the one sent me just in case you have not seen it yet and as I said, there is so much hope now for MCL patients even when they have relapsed.  You can either use this thread or the private messaging, I monitor both.

    Thinking of you, Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
    edited January 2017 #3
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    illead said:

    Hi Ceili

    I have sent a private message to you in answer to the one sent me just in case you have not seen it yet and as I said, there is so much hope now for MCL patients even when they have relapsed.  You can either use this thread or the private messaging, I monitor both.

    Thinking of you, Becky

    Study

    This might generally interest MCL patients and caregivers.  It pertains to relapsed patients only (primary of first-line treatment is not the focus here), but the names of the doctors involved may also be of value to MCL patients, since they no doubt are among the best and most focused on that particual disease.  It is technical...

    http://www.bloodjournal.org/content/128/22/150

    max

  • illead
    illead Member Posts: 884 Member
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    Thanks Max

    That is good information, yes technical but the main point is that they are finding more and more options.  That is certainly one to keep in the file.  The names of drs. etc. are very important too.  We have heard a lot of very positive things about Dr Leonard at Weil Cornell.  Like Dr. Wang, he is very passionate, we need them, that's for sure.  Thanks again.

    Becky

  • Wroberts64
    Wroberts64 Member Posts: 2
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    Watch and Wait

    i was one of those watch and wait for two years. I then was treated with a trial (see my survivor story). watch and wait had o effect on the outcome. 

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Watch & Wait = Active surveillance

    With indolent (slow-growing) lymphomas, active surveillance is one of the standard practices. Treating it too early, as odd as that sounds, can have poor effects later on. It is a chronic, manageable disease that one simply keeps an eye on. And, as time passes, more effective and less toxic treatments enter the picture. As to online research, please discard all outdated information, as only the latest clinical trial results and data are truly pertinent.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    po18guy said:

    Watch & Wait = Active surveillance

    With indolent (slow-growing) lymphomas, active surveillance is one of the standard practices. Treating it too early, as odd as that sounds, can have poor effects later on. It is a chronic, manageable disease that one simply keeps an eye on. And, as time passes, more effective and less toxic treatments enter the picture. As to online research, please discard all outdated information, as only the latest clinical trial results and data are truly pertinent.

    Indeed

    So true, most stuff on the internet, unless it is from solid academic or medical sources, is counterproductive to read. And always focus on the PUBLICATION DATE of the articles.

    At one of my first infusions, a former coworker/friend walked in and took one of the infusion stations just down from me. He had late-stage MCL, which I had never heard of.  I asked my oncoliogist later about whther MCL was like my disease, and he responded, "Oh no.... that is a whole different animal !"  I knew that meant that it was dangerous.  My friend died soon thereafter.

    Eight or 10 years ago, most MCLs were fatal news to most patients, today it is not.  The writings and research of Becky and many others now have it as a very treatable, very controllable disease.  But a person reading five year old data  would not know this, because there is a long lag-time between the introduction of new drugs and studies regarding survival rates.

    MCL treatmens have revolutionized in the last ten years, more so than perhaps any other strain of lymphoma.

    max

  • ShadyGuy
    ShadyGuy Member Posts: 913 Member
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    Internet

    the internet is the largest depository of garbage, propaganda, outdated info and outright lies that has ever existed. Be very skeptical. MCL is very treatable.

  • lindary
    lindary Member Posts: 711 Member
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    watch the dates

    As Max said, watch the publication dates. More than once I started reading some article that was counter other articles & what my Drs were tellling me. When I checked the date it was usually 10 years old, or older. I finally started looking at the date before I read the article. It's not intentional. It's just that once it is put out there it never goes away. Then there are the sites that are put out there and never updated.