Hi everyone...I'm new to the site but not to fNHL...

Hi everyone,

I'm new to the site, and so glad that I've found, what seems to be a very supportive group of people. In 2010, I was diagnosed with fNHL, stage 2. I went through the 6 month treatment, and I'm now on maintenance Rutuximab (2 yr. treatment.) I had treatment # 5 on Wed. I feel awful. I don't know what to do, or say anymore . Thankfully, when I signed in to this site, I saw others complaining of the same thing: fatigue, aches and pains that are unexplainable but coincide with the Rutuximab treatment. What hurts most is the fact that I was told that the treatments would be a "piece of cake." Well, at least I'm not alone. I did take comfort in that...

Thanks for listening,
G

Comments

  • jimwins
    jimwins Member Posts: 2,107
    Welcome
    Welcome Gianna and thanks for sharing.
    You'll hear from others soon as I know there are quite a few here
    on Rituxan maintenance.

    Just wanted to say "Hi" and welcome to the site.
    Lots of caring and supportive folks here.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
    Members are sharing recipes!:
    Recipe Sharing Project
  • vinny59
    vinny59 Member Posts: 1,032
    hey G
    Hey G, welcome. Sorry to here about the problems with your maintenance chemo. If it makes you feel better I have been out of treatment know for over a year , and I still feel lousy!!!LOL, it will get better, stay strong....... Vinny
  • anliperez915
    anliperez915 Member Posts: 770
    Hi Gianna
    Hi Gianna,
    I only had Rituxan as treatment so I can't compare it to chemo. I had a hard time with Rituxan but everybody is different some people just don't get a lot of the side effects. Hope you feel better soon and know that your not alone, come back and let us know how everything is going. Take care

    Sincerely,
    Liz
  • allmost60
    allmost60 Member Posts: 3,178
    Rituxan
    Hi G,
    I am currently on maint R and doing pretty good. My joints ache a lot in my hips and knees, but my doctor won't say for sure that Rituxan is the cause. I had 6 rounds of chemo..CVP-R prior to starting my Rituxan maint....finished chemo in Dec 2010 and then started my R in Feb 2011) I still haven't gotten my energy level back to normal, and don't know if it ever will be 100% again. I'm scheduled to finish my maint in Feb 2013, so maybe once I have a few months under my belt without receiving any form of treatment, I'll see a difference in how I feel...I sure hope so, because I want my "old" self back, or at least half of my old self! ha!! You are definetely not alone in this journey and we are always here to help. By the way...I don't think there is any part of cancer and treatments where the phrase "piece of cake" fits anywhere!! It's all tough...some treatments are less harsh than others, but by no means a piece of cake..."doable" yes! :) Take care and "Welcome" to our group. Love...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401
    Rituxan
    G,
    Believe me,the R is a piece of cake COMPARED to the chemo. John(FNHL-1-4A-5/10)
  • gianna
    gianna Member Posts: 9
    jimwins said:

    Welcome
    Welcome Gianna and thanks for sharing.
    You'll hear from others soon as I know there are quite a few here
    on Rituxan maintenance.

    Just wanted to say "Hi" and welcome to the site.
    Lots of caring and supportive folks here.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
    Members are sharing recipes!:
    Recipe Sharing Project

    Thanks so much, Jim. It's
    Thanks so much, Jim. It's been a bit of a lonely ride. This site sure helps. Congratulations on being in remission. Was your cancer fNHL?
    Mine is fNHL; and I'm in remission, too.

    (Speaking of NHL, my hubby and I are watching the Playoffs right now. Ottawa vs NY Rangers :)

    Have a great evening, Jim and thanks so much for the warm welcome.

    Ciao,
    Gianna
  • gianna
    gianna Member Posts: 9
    vinny59 said:

    hey G
    Hey G, welcome. Sorry to here about the problems with your maintenance chemo. If it makes you feel better I have been out of treatment know for over a year , and I still feel lousy!!!LOL, it will get better, stay strong....... Vinny

    Thanks, Vinny! I mean,
    Thanks, Vinny! I mean, thanks for the encouragement. This site is awesome!

    PS: Is there anything that relieves the crappy feeling?
    We can't drink! (dang it all!)

    Ciao,
    G
  • gianna
    gianna Member Posts: 9

    Hi Gianna
    Hi Gianna,
    I only had Rituxan as treatment so I can't compare it to chemo. I had a hard time with Rituxan but everybody is different some people just don't get a lot of the side effects. Hope you feel better soon and know that your not alone, come back and let us know how everything is going. Take care

    Sincerely,
    Liz

    Thanks, Liz. It really does
    Thanks, Liz. It really does help when I know I'm not alone. I was feeling as though my symptoms were psychosomatic. But I know it wasn't in my head, or a coincidence because I felt horrible each tome the treatment was done. Thanks again and I'll check in later.

    Thanks again,

    Gianna
  • gianna
    gianna Member Posts: 9

    Hi Gianna
    Hi Gianna,
    I only had Rituxan as treatment so I can't compare it to chemo. I had a hard time with Rituxan but everybody is different some people just don't get a lot of the side effects. Hope you feel better soon and know that your not alone, come back and let us know how everything is going. Take care

    Sincerely,
    Liz

    Thanks, Liz. It really does
    Thanks, Liz. It really does help when I know I'm not alone. I was feeling as though my symptoms were psychosomatic. But I know it wasn't in my head, or a coincidence because I felt horrible each tome the treatment was done. Thanks again and I'll check in later.

    Thanks again,

    Gianna
  • gianna
    gianna Member Posts: 9
    allmost60 said:

    Rituxan
    Hi G,
    I am currently on maint R and doing pretty good. My joints ache a lot in my hips and knees, but my doctor won't say for sure that Rituxan is the cause. I had 6 rounds of chemo..CVP-R prior to starting my Rituxan maint....finished chemo in Dec 2010 and then started my R in Feb 2011) I still haven't gotten my energy level back to normal, and don't know if it ever will be 100% again. I'm scheduled to finish my maint in Feb 2013, so maybe once I have a few months under my belt without receiving any form of treatment, I'll see a difference in how I feel...I sure hope so, because I want my "old" self back, or at least half of my old self! ha!! You are definetely not alone in this journey and we are always here to help. By the way...I don't think there is any part of cancer and treatments where the phrase "piece of cake" fits anywhere!! It's all tough...some treatments are less harsh than others, but by no means a piece of cake..."doable" yes! :) Take care and "Welcome" to our group. Love...Sue (FNHL-2-3A-6/10)

    Sue,
    Thank you so much for

    Sue,

    Thank you so much for the message. It was actually your post that made me feel reassured that I wasn't "dreaming" these symptoms. Aching in my ribs, lower back...sheesh! Just not much fun.
    You're absolutely right, when you say there is no part of treatment that's a "piece of cake." My initial treatments were just chaotic. Prednisone made me manic! I'm glad that's done. I'll be done the maintenance chemo Jan 2013. (One month before you!)
    Let's check in with each other and see how things go.

    Thanks again, Sue.
    Take care
    XO
    Gianna
  • gianna
    gianna Member Posts: 9
    allmost60 said:

    Rituxan
    Hi G,
    I am currently on maint R and doing pretty good. My joints ache a lot in my hips and knees, but my doctor won't say for sure that Rituxan is the cause. I had 6 rounds of chemo..CVP-R prior to starting my Rituxan maint....finished chemo in Dec 2010 and then started my R in Feb 2011) I still haven't gotten my energy level back to normal, and don't know if it ever will be 100% again. I'm scheduled to finish my maint in Feb 2013, so maybe once I have a few months under my belt without receiving any form of treatment, I'll see a difference in how I feel...I sure hope so, because I want my "old" self back, or at least half of my old self! ha!! You are definetely not alone in this journey and we are always here to help. By the way...I don't think there is any part of cancer and treatments where the phrase "piece of cake" fits anywhere!! It's all tough...some treatments are less harsh than others, but by no means a piece of cake..."doable" yes! :) Take care and "Welcome" to our group. Love...Sue (FNHL-2-3A-6/10)

    Sue,
    Thank you so much for

    Sue,

    Thank you so much for the message. It was actually your post that made me feel reassured that I wasn't "dreaming" these symptoms. Aching in my ribs, lower back...sheesh! Just not much fun.
    You're absolutely right, when you say there is no part of treatment that's a "piece of cake." My initial treatments were just chaotic. Prednisone made me manic! I'm glad that's done. I'll be done the maintenance chemo Jan 2013. (One month before you!)
    Let's check in with each other and see how things go.

    Thanks again, Sue.
    Take care
    XO
    Gianna
  • gianna
    gianna Member Posts: 9
    allmost60 said:

    Rituxan
    Hi G,
    I am currently on maint R and doing pretty good. My joints ache a lot in my hips and knees, but my doctor won't say for sure that Rituxan is the cause. I had 6 rounds of chemo..CVP-R prior to starting my Rituxan maint....finished chemo in Dec 2010 and then started my R in Feb 2011) I still haven't gotten my energy level back to normal, and don't know if it ever will be 100% again. I'm scheduled to finish my maint in Feb 2013, so maybe once I have a few months under my belt without receiving any form of treatment, I'll see a difference in how I feel...I sure hope so, because I want my "old" self back, or at least half of my old self! ha!! You are definetely not alone in this journey and we are always here to help. By the way...I don't think there is any part of cancer and treatments where the phrase "piece of cake" fits anywhere!! It's all tough...some treatments are less harsh than others, but by no means a piece of cake..."doable" yes! :) Take care and "Welcome" to our group. Love...Sue (FNHL-2-3A-6/10)

    Sue,
    Thank you so much for

    Sue,

    Thank you so much for the message. It was actually your post that made me feel reassured that I wasn't "dreaming" these symptoms. Aching in my ribs, lower back...sheesh! Just not much fun.
    You're absolutely right, when you say there is no part of treatment that's a "piece of cake." My initial treatments were just chaotic. Prednisone made me manic! I'm glad that's done. I'll be done the maintenance chemo Jan 2013. (One month before you!)
    Let's check in with each other and see how things go.

    Thanks again, Sue.
    Take care
    XO
    Gianna
  • gianna
    gianna Member Posts: 9
    allmost60 said:

    Rituxan
    Hi G,
    I am currently on maint R and doing pretty good. My joints ache a lot in my hips and knees, but my doctor won't say for sure that Rituxan is the cause. I had 6 rounds of chemo..CVP-R prior to starting my Rituxan maint....finished chemo in Dec 2010 and then started my R in Feb 2011) I still haven't gotten my energy level back to normal, and don't know if it ever will be 100% again. I'm scheduled to finish my maint in Feb 2013, so maybe once I have a few months under my belt without receiving any form of treatment, I'll see a difference in how I feel...I sure hope so, because I want my "old" self back, or at least half of my old self! ha!! You are definetely not alone in this journey and we are always here to help. By the way...I don't think there is any part of cancer and treatments where the phrase "piece of cake" fits anywhere!! It's all tough...some treatments are less harsh than others, but by no means a piece of cake..."doable" yes! :) Take care and "Welcome" to our group. Love...Sue (FNHL-2-3A-6/10)

    Sue,
    Thank you so much for

    Sue,

    Thank you so much for the message. It was actually your post that made me feel reassured that I wasn't "dreaming" these symptoms. Aching in my ribs, lower back...sheesh! Just not much fun.
    You're absolutely right, when you say there is no part of treatment that's a "piece of cake." My initial treatments were just chaotic. Prednisone made me manic! I'm glad that's done. I'll be done the maintenance chemo Jan 2013. (One month before you!)
    Let's check in with each other and see how things go.

    Thanks again, Sue.
    Take care
    XO
    Gianna
  • jimwins
    jimwins Member Posts: 2,107
    gianna said:

    Thanks so much, Jim. It's
    Thanks so much, Jim. It's been a bit of a lonely ride. This site sure helps. Congratulations on being in remission. Was your cancer fNHL?
    Mine is fNHL; and I'm in remission, too.

    (Speaking of NHL, my hubby and I are watching the Playoffs right now. Ottawa vs NY Rangers :)

    Have a great evening, Jim and thanks so much for the warm welcome.

    Ciao,
    Gianna

    Hi G :)
    Hi G,

    I had Diffuse Large B Cell lymphoma.
    There's more detail in the profile/bio:

    http://csn.cancer.org/user/149771

    Clickable Link
  • boy34
    boy34 Member Posts: 20
    FNHL
    Hi There,

    Just a little curious in why your getting treatment? Is it because you have an agressive form? I was diagnosed a just about a year ago with FNHL Stage 3 Grade 1.5 and they decided not to treat me.So changed my diet and my tumors went away and In December I was declared what they call Clinical Remission. Good Luck and be well

    Chris