MANTLE CELL LYMPHOMA INDOLENT TYPE

jeevanpuri
jeevanpuri Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi

 

I am 67 years old about 1 1/2 years back i was diagnoised with mantle cell lymphpma.

my wbc started at 11  and it is now 24. i do not have any symptoms  and i am

on wait and watch. i wanted to see if there are any mcl patients who have similar indolent MCL

and perhaps learn from their experience. i wanted to find out at what wbc level may be higher then 100

that MCL becomes critical or just higher WBC   without any stmptoms should cause no concern.

has anyone with mcl and very high wbc is living without complications.

thanks

jeevan

 

 

 

 

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    illead

    Jeevanpuri,

    Becky, who has the site name "illead," is our official/unofficial lay expert on Mantle Cell. I am sure she will chime in very soon...

    max

     

  • illead
    illead Member Posts: 884 Member
    #3
    Max Former Hodgkins Stage 3 said:

    illead

    Jeevanpuri,

    Becky, who has the site name "illead," is our official/unofficial lay expert on Mantle Cell. I am sure she will chime in very soon...

    max

     

    Here I am

    Hi Jeevan,

         My husband Bill has MCL.  You can click on our picture and it will take you to our page explaining his story.  We have both done extensive research on MCL but I am the one who does the writing, although Bill monitors this site also.  About the WBC counts, at the moment we are out of the country so I don't have Bill's info with me.  By the time he was diagnosed though, all of his blood counts were extremly low, although I do not think his WBC was too bad but it was not extremely high.  Bill was very symptomatic at diagnosis, his bone marrow was 90% MCL and needless to say we didn't think he was going to make it, but he made a dramatic recovery with chemo.  MCL is very aggressive but there is another form MCL takes that sounds like what you are describing.  There are indolent subtypes of MCL that do not necessarily require the same  treatment as the agressive type due to it's slow growing nature.   Bill is just reading about that now.  It sounds like that is what you have, so your oncologist must be on the mark.  It is said a lot here not to believe everything you read on the internet and that is so true.  There is new research about all lymphomas and especially MCL lately, so although it is good to do research, make sure you are using the latest information.  Please feel free to ask us any questions and join us here anytime.  We all care about each other and it is a good group of people.  You can also personal message us from "our page" with no email info being exchanged unless agreed upon by both parties.  Our very best to you Javeen, it sounds like you are in good hands.

    Becky and Bill

     

     

     

     

  • jeevanpuri
    jeevanpuri Member Posts: 4
    #4
    illead said:

    Here I am

    Hi Jeevan,

         My husband Bill has MCL.  You can click on our picture and it will take you to our page explaining his story.  We have both done extensive research on MCL but I am the one who does the writing, although Bill monitors this site also.  About the WBC counts, at the moment we are out of the country so I don't have Bill's info with me.  By the time he was diagnosed though, all of his blood counts were extremly low, although I do not think his WBC was too bad but it was not extremely high.  Bill was very symptomatic at diagnosis, his bone marrow was 90% MCL and needless to say we didn't think he was going to make it, but he made a dramatic recovery with chemo.  MCL is very aggressive but there is another form MCL takes that sounds like what you are describing.  There are indolent subtypes of MCL that do not necessarily require the same  treatment as the agressive type due to it's slow growing nature.   Bill is just reading about that now.  It sounds like that is what you have, so your oncologist must be on the mark.  It is said a lot here not to believe everything you read on the internet and that is so true.  There is new research about all lymphomas and especially MCL lately, so although it is good to do research, make sure you are using the latest information.  Please feel free to ask us any questions and join us here anytime.  We all care about each other and it is a good group of people.  You can also personal message us from "our page" with no email info being exchanged unless agreed upon by both parties.  Our very best to you Javeen, it sounds like you are in good hands.

    Becky and Bill

     

     

     

     

     Thanks Becky and Bill
     
    You

     Thanks Becky and Bill

     

    You have been very kind in sharing information.

     

    jeevan

  • Jacky2270
    Jacky2270 Member Posts: 8
    edited October 2018 #5
    jeevanpuri said:

     Thanks Becky and Bill
     
    You

     Thanks Becky and Bill

     

    You have been very kind in sharing information.

     

    jeevan

    H Jeevan,

    H Jeevan,

     

    My name is Jacky. Im 48 years old and have just been  diagnosed with MLC, I will have my petscan next week. I know that my blood coutns seems normal and my Ki-67 is 10%.

     

    Not sure what that meand, still have to wait for final results. I do not have any symptoms buy a swollen gland that was taken out for biopsy. 

     

    Woudl like to har from you how you are doing?

     

    Jacky

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