Molecular level blood work

yesyes2
yesyes2 Member Posts: 591
Hi All,

I was wondering if any of you with either Mantle Cell or fNHL and are currently in remission are having your disease followed with Molecular level bloodwork. We can appear to be in remission based on our PETs and CTs with normal LDH but on a molecular level still have cancer. There is a blood test around on these 2 types of NHL, but don't know how readily available it is, which looks for minimal disease in the blood. I have met several people with fNHL who get this test done though. I'm disappointed that it is not available on aggressive lymphomas. I've been asking about it for my PTLPD or DLBC, but no luck at this point in time, according to the ONCS at the ASH meeting today. Mary, may be something your Onc at the Mayo Clinic is using. Anyway, just wondering!!!
Leslie

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Molecular level bloodwork
    Leslie,
    I have follicular but have not heard of the molecular level exam as of yet. Just wondering what they could do if it was still present. Maybe it will tell them more treatment is necessary in order to possibly cure the indolent type. I don't really know. John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    COBRA666 said:

    Molecular level bloodwork
    Leslie,
    I have follicular but have not heard of the molecular level exam as of yet. Just wondering what they could do if it was still present. Maybe it will tell them more treatment is necessary in order to possibly cure the indolent type. I don't really know. John(FNHL-1-4A-5/10)

    Hey John
    John, Thought this would get your attention. Currently the people I know who have had this test where clear on a molecular level, yeah! I don't know if they would treat or do your fav......watch and wait. I think they use it as a prognostic indicater. I sure would like to know where I stand but I guess there are people who wouldn't want to know if they couldn't do anything anyway. In clinical trials they do use molecular level. Something more to ask our Oncs and will probably have better results getting the blood test at major cancer centers. Just a thought.

    When do you start your rituxan maintenance? Will you do 4 sessions every 6 months or once ever 2 or 3 months?

    Blessings,
    Leslie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    yesyes2 said:

    Hey John
    John, Thought this would get your attention. Currently the people I know who have had this test where clear on a molecular level, yeah! I don't know if they would treat or do your fav......watch and wait. I think they use it as a prognostic indicater. I sure would like to know where I stand but I guess there are people who wouldn't want to know if they couldn't do anything anyway. In clinical trials they do use molecular level. Something more to ask our Oncs and will probably have better results getting the blood test at major cancer centers. Just a thought.

    When do you start your rituxan maintenance? Will you do 4 sessions every 6 months or once ever 2 or 3 months?

    Blessings,
    Leslie

    Rituxin
    Leslie,
    I start in March and every 6 months for two years. They have me scheduled for a pet scan at the same time. How do we get on the list to have the latest update sent to us. I am sure it will be on the computer and not in the mail,but thats fine. I don't have any thing like that here in North Carolina that I know about. I don't care for the websites because they are so far behind and confuse us even more. I hear they are steady making progress in all aspects of the lymphoma fields. I really feel the cure for this disease will be at the moleculer level since it affects the genes. They will cure it all one day and the sooner the better.I guess until then we will have to WATCH AND WAIT!!!!LOL John(FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178
    Hmmmmm...
    Hmmm...I'm wondering when I should ask the question about Molecular level bloodwork....at the start of my appointment on Tuesday, or at the end? I'm thinkin at the start.."BEFORE" I pull out my notebook full of questions...hahaha! Seriously though...I most definetely will ask if my clinic does Molecular bloodwork. You did "GOOD" Leslie......wish I had a way to go to meetings like this..very informative. I'm like you...the more I know...the better I feel. Love...Sue (FNHL-2-3A-6/10)
  • merrywinner
    merrywinner Member Posts: 626
    Wow
    Such good info to ponder. I think the Zevalin treatment I had in April is supposed to also work at the molecular level but not completely sure. I know precious little about these new blood tests,pretty much just what I've heard on the news in the past couple of weeks and that was pretty general. They talked mostly about it's use with leukemia but because of the close relationship between leukemia and lymphoma I always pay attention. I will definitely ask him about it and share what I find out. I better go and get my notebook out! Thanks Leslie for all of your informative and supportive posts. Mary
  • yesyes2
    yesyes2 Member Posts: 591

    Wow
    Such good info to ponder. I think the Zevalin treatment I had in April is supposed to also work at the molecular level but not completely sure. I know precious little about these new blood tests,pretty much just what I've heard on the news in the past couple of weeks and that was pretty general. They talked mostly about it's use with leukemia but because of the close relationship between leukemia and lymphoma I always pay attention. I will definitely ask him about it and share what I find out. I better go and get my notebook out! Thanks Leslie for all of your informative and supportive posts. Mary

    Web Site Information
    Hi John and All,

    Ok, yes there is lots of incorrect and old information on the web, but there also is a lot of good information available to us if we choose wisely. Good grief, sound really full of my self don't I, LOL.

    Anyway, I will list what sites I find most helpful and you can take it from there. I also belong to a medical web site which send me twice a week the latest journal postings on lymphoma and other cancers I've reguested infor on. I receive this information the same time the doctors do. Just remember all articles are based on research that has been done perhaps in the past 10 years or more. But it's the most current results we have I think.

    Leukemia & Lymphoma Association Has great pod cast/web cast to listen to and take part in.
    Get on their mailing list and they will email and/of snail mail you when there are new educational lectures. The ASH meeting was through the LLS.

    LRF Lymphoma Resource Foundation Is a great resource for the latest information, has pod casts of all online lectures, given by Ocologists, also pods of their yearly 3 day conferences. Last years meeting was where I first heard about Molecular testings. I can't recommend this organization enough. Give them a call and they have real people for you to talk with and gleen the information that you need. They have done journal searches for me and than mailed me the journal articals. Just terrific. Also will assist with trial searchs and info on the latest trials available.

    Lymphonation.org This is a wonderful web site which is the brainchild of Greg Defoe, a fNHL survivor for many years. I met him at the LRF conference last year. I don't know how he does it but he gets the latest and best information on lymphoma. I believe they also have a message board.

    Hope this answers your question John. I really recommend if nothing else, just getting on their mailing lists.

    Have a wonderful day,
    Leslie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    yesyes2 said:

    Web Site Information
    Hi John and All,

    Ok, yes there is lots of incorrect and old information on the web, but there also is a lot of good information available to us if we choose wisely. Good grief, sound really full of my self don't I, LOL.

    Anyway, I will list what sites I find most helpful and you can take it from there. I also belong to a medical web site which send me twice a week the latest journal postings on lymphoma and other cancers I've reguested infor on. I receive this information the same time the doctors do. Just remember all articles are based on research that has been done perhaps in the past 10 years or more. But it's the most current results we have I think.

    Leukemia & Lymphoma Association Has great pod cast/web cast to listen to and take part in.
    Get on their mailing list and they will email and/of snail mail you when there are new educational lectures. The ASH meeting was through the LLS.

    LRF Lymphoma Resource Foundation Is a great resource for the latest information, has pod casts of all online lectures, given by Ocologists, also pods of their yearly 3 day conferences. Last years meeting was where I first heard about Molecular testings. I can't recommend this organization enough. Give them a call and they have real people for you to talk with and gleen the information that you need. They have done journal searches for me and than mailed me the journal articals. Just terrific. Also will assist with trial searchs and info on the latest trials available.

    Lymphonation.org This is a wonderful web site which is the brainchild of Greg Defoe, a fNHL survivor for many years. I met him at the LRF conference last year. I don't know how he does it but he gets the latest and best information on lymphoma. I believe they also have a message board.

    Hope this answers your question John. I really recommend if nothing else, just getting on their mailing lists.

    Have a wonderful day,
    Leslie

    Information
    Leslie,
    Thanks for the info. It just seems I manage to go to the wrong sites that confuse the heck out of me. I guess I just don't know where to look sometimes.Be waiting for your future posts. Thanks again for the information. John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    yesyes2 said:

    Web Site Information
    Hi John and All,

    Ok, yes there is lots of incorrect and old information on the web, but there also is a lot of good information available to us if we choose wisely. Good grief, sound really full of my self don't I, LOL.

    Anyway, I will list what sites I find most helpful and you can take it from there. I also belong to a medical web site which send me twice a week the latest journal postings on lymphoma and other cancers I've reguested infor on. I receive this information the same time the doctors do. Just remember all articles are based on research that has been done perhaps in the past 10 years or more. But it's the most current results we have I think.

    Leukemia & Lymphoma Association Has great pod cast/web cast to listen to and take part in.
    Get on their mailing list and they will email and/of snail mail you when there are new educational lectures. The ASH meeting was through the LLS.

    LRF Lymphoma Resource Foundation Is a great resource for the latest information, has pod casts of all online lectures, given by Ocologists, also pods of their yearly 3 day conferences. Last years meeting was where I first heard about Molecular testings. I can't recommend this organization enough. Give them a call and they have real people for you to talk with and gleen the information that you need. They have done journal searches for me and than mailed me the journal articals. Just terrific. Also will assist with trial searchs and info on the latest trials available.

    Lymphonation.org This is a wonderful web site which is the brainchild of Greg Defoe, a fNHL survivor for many years. I met him at the LRF conference last year. I don't know how he does it but he gets the latest and best information on lymphoma. I believe they also have a message board.

    Hope this answers your question John. I really recommend if nothing else, just getting on their mailing lists.

    Have a wonderful day,
    Leslie

    Correction to Info OOPs!!!
    Hi All,

    Boy is my face red!!! I posted an incorrect web site and information. Although Lymphonation is good it is not Greg's site. And Gregs site is wonderful and should be checked out.

    The correct name is Non Hodgkins Lymphoma Cyberfamily

    www.nhlcyberfamily.org

    He has alot of the abstracts from the 2010 ASH meeting, well worth checking out in my humble oppinion. And John, yes this is an up to date site.

    Love to all my peeps,
    Leslie