MY FIRST POST ON THIS BOARD

NANCYL1
NANCYL1 Member Posts: 289
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I had a number of tests early this year and was finally diagnosed with B Cell Lymphoma this past spring. Maybe there is more to that title, I am not sure. Hope I am on the right board! Am getting RITUXIN infusions every six months for two years. Very new med. Each time, one infusion a week for four weeks. Had the first set in May. Next set of infusions around the end of November.

Heck of a way to introduce yourself!

Nancy
«1

Comments

  • jimwins
    jimwins Member Posts: 2,107
    #2
    Welcome
    Hi Nancy and welcome. Sorry you have to be here but you will find
    wonderful and supportive folks here.

    Please feel free to share with us and offer support too. We're all
    in this together. I was diagnosed with Diffuse Large B Cell Lymphoma
    April 2011. I completed chemo October 2011 and am in complete remission.
    I'm heading toward my one year mark and think I might just have a party ;).

    Again, welcome and sending you big warm hugs,

    Jim
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Welcome

    Yes, Nancy, you are in the right place !

    Quite a few of our survivors have had your strain of lymphoma (mine was something different), so you should find this a storehouse of information and support.

    You will note that people will ask about just about anything cancer-related here, so do not hesitate to ask: Side-effects, emotional issues, etc., etc.

    max
  • winthefight
    winthefight Member Posts: 162
    #4
    welcome
    Hello Nancy,

    Welcome to the room. Yep, this is the right place. Feel free to visit when you need us. I too have used Rituxin and am loving it!!! It seems we have the same treatment program. Best of luck to you.

    Again welcome. We are glad you are here!
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    Welcome...
    Hi Nancy,
    I'm 3 treatments away from finishing my 2 year Rituxan maint, but I do mine every other month instead of the way your's is set up. So far, so good for me...haven't had any issues with the Rituxan. My joints are a little stiff, but that may be more age related than Rituxan related. I'll be 62 at the end of the month, so aches and pains are to be expected I suppose..ha! I have Follicular NHL-grade2-typeA-stage3-Dx June 2010. As others have said, this is a great group for support. Hope to hear from you often. Love...Sue
    (Yakima, Washington)
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #6
    allmost60 said:

    Welcome...
    Hi Nancy,
    I'm 3 treatments away from finishing my 2 year Rituxan maint, but I do mine every other month instead of the way your's is set up. So far, so good for me...haven't had any issues with the Rituxan. My joints are a little stiff, but that may be more age related than Rituxan related. I'll be 62 at the end of the month, so aches and pains are to be expected I suppose..ha! I have Follicular NHL-grade2-typeA-stage3-Dx June 2010. As others have said, this is a great group for support. Hope to hear from you often. Love...Sue
    (Yakima, Washington)

    Other Use
    allmost,

    You mentioned aches and pains. Do you know what rituxan is routinely used for besides cancer ?

    Arthritis !

    max
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #7
    Max Former Hodgkins Stage 3 said:

    Other Use
    allmost,

    You mentioned aches and pains. Do you know what rituxan is routinely used for besides cancer ?

    Arthritis !

    max

    Other use...
    Hi Max,
    Well...it's not working for the aches and pain I have. :( My knees and feet feel like someone has hit them with a bat, but usually this feeling occurs in the evening after I've been up and about all day. Shoulders and lower back hurt most of the day and night, but once I take a couple of anacin and pull out the heating pad I can find some relief. I didn't have these problems before chemo, so I tend to think a lot of it is post chemo related. I'm looking forward to finishing the R maint in February and hopefully see some of these issues subside...probably wishful thinking, but one can hope! Have a good day Max...hope your feeling less sad with your daughter off to school. Is she close enough to be able to come home for Holidays?...hope so. Talk to you later...sue
  • jimwins
    jimwins Member Posts: 2,107
    #8
    allmost60 said:

    Other use...
    Hi Max,
    Well...it's not working for the aches and pain I have. :( My knees and feet feel like someone has hit them with a bat, but usually this feeling occurs in the evening after I've been up and about all day. Shoulders and lower back hurt most of the day and night, but once I take a couple of anacin and pull out the heating pad I can find some relief. I didn't have these problems before chemo, so I tend to think a lot of it is post chemo related. I'm looking forward to finishing the R maint in February and hopefully see some of these issues subside...probably wishful thinking, but one can hope! Have a good day Max...hope your feeling less sad with your daughter off to school. Is she close enough to be able to come home for Holidays?...hope so. Talk to you later...sue

    Aches and pains
    Hi Sue,

    I know one (maybe two) of the nurses I had during treatment had been on rituxan.
    I'm sure one was arthritis and the other, an auto-immune disorder I think.

    I'm sorry you're having aches and pains - hopefully it will subside once
    you reach the rituxan finish line! We'll have to have a celebration!

    Hugs,

    Jim
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #9
    jimwins said:

    Aches and pains
    Hi Sue,

    I know one (maybe two) of the nurses I had during treatment had been on rituxan.
    I'm sure one was arthritis and the other, an auto-immune disorder I think.

    I'm sorry you're having aches and pains - hopefully it will subside once
    you reach the rituxan finish line! We'll have to have a celebration!

    Hugs,

    Jim

    Thanks...
    Thanks Jim...I tend to forget that watching Lizzy 30 hours a week may be part of the reason I'm more achey and sore AND tired. She's 16 months now and on the go from the time she gets here until she goes home. Still takes 2 short naps a day, so i get to rest up while she sleeps :) Have a good weekend...Sue
    (FNHL-2-3a-6/10)
  • anliperez915
    anliperez915 Member Posts: 770
    #10
    allmost60 said:

    Welcome...
    Hi Nancy,
    I'm 3 treatments away from finishing my 2 year Rituxan maint, but I do mine every other month instead of the way your's is set up. So far, so good for me...haven't had any issues with the Rituxan. My joints are a little stiff, but that may be more age related than Rituxan related. I'll be 62 at the end of the month, so aches and pains are to be expected I suppose..ha! I have Follicular NHL-grade2-typeA-stage3-Dx June 2010. As others have said, this is a great group for support. Hope to hear from you often. Love...Sue
    (Yakima, Washington)

    Hi Sue
    Hi Sue,
    Definitely not age related.. I'm 36 (not a spring chick either lol) but I'm having all the aches and pains you are mentioning! I think its the Rituxan...anywho take care sweet Sue sending you a huge Hug!

    Sincerely,
    Liz
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #11
    anliperez915 said:

    Hi Sue
    Hi Sue,
    Definitely not age related.. I'm 36 (not a spring chick either lol) but I'm having all the aches and pains you are mentioning! I think its the Rituxan...anywho take care sweet Sue sending you a huge Hug!

    Sincerely,
    Liz

    :) Liz..
    Hi Liz,
    You are more of a spring chick than me kiddo! ha! I'm pretty sure most of this is Rituxan aches and pains, plus post chemo(CVP-R). I had a rough time with the prednisone and even though others didn't, I know it hurt me in more ways than just being hyper. I've done extensive reading on prednisone and it really affects folks differently...my experience was awful! We will see next year after I'm finished with the R...keeping my fingers crossed. Have a good weekend Liz. Love you...Sue
    (FNHL-2-3A-6/10)
  • NANCYL1
    NANCYL1 Member Posts: 289
    #12
    jimwins said:

    Welcome
    Hi Nancy and welcome. Sorry you have to be here but you will find
    wonderful and supportive folks here.

    Please feel free to share with us and offer support too. We're all
    in this together. I was diagnosed with Diffuse Large B Cell Lymphoma
    April 2011. I completed chemo October 2011 and am in complete remission.
    I'm heading toward my one year mark and think I might just have a party ;).

    Again, welcome and sending you big warm hugs,

    Jim

    WELCOME
    Hello Jim:

    Thank you for the wonderful Welcome. This sounds like a very good place to be.

    Nancy
  • NANCYL1
    NANCYL1 Member Posts: 289
    #13
    Max Former Hodgkins Stage 3 said:

    Welcome

    Yes, Nancy, you are in the right place !

    Quite a few of our survivors have had your strain of lymphoma (mine was something different), so you should find this a storehouse of information and support.

    You will note that people will ask about just about anything cancer-related here, so do not hesitate to ask: Side-effects, emotional issues, etc., etc.

    max

    WELCOME
    Max:

    Thanks for the welcome and information.

    Nancy
  • NANCYL1
    NANCYL1 Member Posts: 289
    #14
    winthefight said:

    welcome
    Hello Nancy,

    Welcome to the room. Yep, this is the right place. Feel free to visit when you need us. I too have used Rituxin and am loving it!!! It seems we have the same treatment program. Best of luck to you.

    Again welcome. We are glad you are here!

    WELCOME
    Hello Winthefight:

    Thank you for the welcome.

    I know that the heavy-duty chemo. is rough. All I have experienced is Rituxin. Not too bad, I guess, in comparison.

    Glad to be here.

    Nancy
  • NANCYL1
    NANCYL1 Member Posts: 289
    #15
    allmost60 said:

    Welcome...
    Hi Nancy,
    I'm 3 treatments away from finishing my 2 year Rituxan maint, but I do mine every other month instead of the way your's is set up. So far, so good for me...haven't had any issues with the Rituxan. My joints are a little stiff, but that may be more age related than Rituxan related. I'll be 62 at the end of the month, so aches and pains are to be expected I suppose..ha! I have Follicular NHL-grade2-typeA-stage3-Dx June 2010. As others have said, this is a great group for support. Hope to hear from you often. Love...Sue
    (Yakima, Washington)

    WELCOME

    Hi Sue:

    Thanks for the welcome note.

    In comparison to what I have heard about the heavy-duty Chemo, I guess Rituxin is not too bad. Re "aches and pains": I am in my seventies and have arthritis, but I would say that the pains since getting Rituxin are a bit different. My M.D. said pains would disappear and they did temporarily, since Rituxin is used for arthritis, apparently.

    Happy to be with the group.

    Nancy
  • forme
    forme Member Posts: 1,161 Member
    #16
    Welcome
    Hi Nancy

    I just want to add my welcome to you. This is a truly wonderful and caring group of people.

    Please feel free to ask any question or share anything with the group. You will always get a reply.

    There are many in the group who are getting Rituxin. I am not, so I cannot answer any of your rituxin questions. But I can try to help in other ways.

    Lisha
  • NANCYL1
    NANCYL1 Member Posts: 289
    #17
    forme said:

    Welcome
    Hi Nancy

    I just want to add my welcome to you. This is a truly wonderful and caring group of people.

    Please feel free to ask any question or share anything with the group. You will always get a reply.

    There are many in the group who are getting Rituxin. I am not, so I cannot answer any of your rituxin questions. But I can try to help in other ways.

    Lisha

    WELCOME
    Lisha:

    Thank you for adding your Welcome!

    It is great to know that we can ask questions or make comments and count on a reply.

    I continue Rituxin around the end of November so you may hear some complaints from me, although I must say that, thus far, it is not too bad.

    I wonder whether anyone here has read the column in The New York Times, written by a young woman who has cancer.

    Nancy.
  • winthefight
    winthefight Member Posts: 162
    #18
    allmost60 said:

    Other use...
    Hi Max,
    Well...it's not working for the aches and pain I have. :( My knees and feet feel like someone has hit them with a bat, but usually this feeling occurs in the evening after I've been up and about all day. Shoulders and lower back hurt most of the day and night, but once I take a couple of anacin and pull out the heating pad I can find some relief. I didn't have these problems before chemo, so I tend to think a lot of it is post chemo related. I'm looking forward to finishing the R maint in February and hopefully see some of these issues subside...probably wishful thinking, but one can hope! Have a good day Max...hope your feeling less sad with your daughter off to school. Is she close enough to be able to come home for Holidays?...hope so. Talk to you later...sue

    aches and pains
    I have aches and pains that I never had before treatment too. The Rituxin use to take away those pains. But, after years on the stuff, the aches and pains have returned. Either they are making that stuff weaker, or my body has gotten use to it.

    I didn't think about the heating pad. Thanks for that advice. I'll have to put that on my shopping list.

    Ps. My Oncologist says the aches and pains are age related to me too. I'm 47...I just want to belt him each time he tells me that.

    Lots of luck and hugs.
  • winthefight
    winthefight Member Posts: 162
    #19
    NANCYL1 said:

    WELCOME
    Lisha:

    Thank you for adding your Welcome!

    It is great to know that we can ask questions or make comments and count on a reply.

    I continue Rituxin around the end of November so you may hear some complaints from me, although I must say that, thus far, it is not too bad.

    I wonder whether anyone here has read the column in The New York Times, written by a young woman who has cancer.

    Nancy.

    NY Times
    Is it about Rituxin?
  • NANCYL1
    NANCYL1 Member Posts: 289
    #20
    winthefight said:

    NY Times
    Is it about Rituxin?

    NYTIMES.COM
    "Life Interrupted," in NYTIMES.COM

    By SULEIKA JAOUAD

    I only read two columns, and it sounds like regular chemo. She's 24 and going through a tough time.
  • jimwins
    jimwins Member Posts: 2,107
    #21
    NANCYL1 said:

    NYTIMES.COM
    "Life Interrupted," in NYTIMES.COM

    By SULEIKA JAOUAD

    I only read two columns, and it sounds like regular chemo. She's 24 and going through a tough time.

    SULEIKA JAOUAD
    Hello everyone. I found these links related to Suleika's story
    in case you're interested:

    5 Days of Chemo


    More and 5 minute video celebrating 100 days since her transplant

    Series of Videos from NY Times

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