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

gianna
Posts: 9
Joined: Apr 2012

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

jimwins's picture
jimwins
Posts: 1975
Joined: Aug 2011

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

gianna
Posts: 9
Joined: Apr 2012

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

jimwins's picture
jimwins
Posts: 1975
Joined: Aug 2011

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

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

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

gianna
Posts: 9
Joined: Apr 2012

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

G,
Believe me,the R is a piece of cake COMPARED to the chemo. John(FNHL-1-4A-5/10)

anliperez915's picture
anliperez915
Posts: 741
Joined: Sep 2011

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

gianna
Posts: 9
Joined: Apr 2012

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
Posts: 9
Joined: Apr 2012

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

allmost60's picture
allmost60
Posts: 3150
Joined: Jul 2010

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)

gianna
Posts: 9
Joined: Apr 2012

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
Posts: 9
Joined: Apr 2012

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
Posts: 9
Joined: Apr 2012

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
Posts: 9
Joined: Apr 2012

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

boy34
Posts: 20
Joined: Aug 2011

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

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