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MY FIRST POST ON THIS BOARD

NANCYL1
Posts: 229
Joined: Jun 2012

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

jimwins's picture
jimwins
Posts: 2004
Joined: Aug 2011

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

NANCYL1
Posts: 229
Joined: Jun 2012

Hello Jim:

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

Nancy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

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

NANCYL1
Posts: 229
Joined: Jun 2012

Max:

Thanks for the welcome and information.

Nancy

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

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!

NANCYL1
Posts: 229
Joined: Jun 2012

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

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

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's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

allmost,

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

Arthritis !

max

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

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's picture
jimwins
Posts: 2004
Joined: Aug 2011

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's picture
allmost60
Posts: 3163
Joined: Jul 2010

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)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

Sue,

I should have mentioned that Rituxan is used only for rheumatoid arthritis, not osteo.

I am 56, but orthopedicly I suppose I am 100: Eighteen fractures, a compression fracture at T-9 in my back, two collapsed disks, severe arthritis in the spine from the lumbar to the neck, ossification (abnormal bone growth) in the left hip -- I could go on.

I know your pain, and hope it lightens.

max

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

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.

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

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's picture
allmost60
Posts: 3163
Joined: Jul 2010

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
Posts: 229
Joined: Jun 2012

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's picture
forme
Posts: 1158
Joined: Aug 2010

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
Posts: 229
Joined: Jun 2012

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's picture
winthefight
Posts: 162
Joined: Dec 2007

Is it about Rituxin?

NANCYL1
Posts: 229
Joined: Jun 2012

"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's picture
jimwins
Posts: 2004
Joined: Aug 2011

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

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Welcome to our family forum---this is a great family of support and encouragement, prayers and information----emotional support, and more--even recipes for foods of comfort!!

I too am on maintenance Rituxan, every 8 weeks, after chemo last year. I too have the aches noted more shortly after treatment---Though, I'll take it if it keeps the NHL at bay!! Next dose Wednesday. Biggest issue seems to be getting the IV started!!!

Hope your treatments go well--- hugs and prayers and felicitations,

susan

NANCYL1
Posts: 229
Joined: Jun 2012

Susan:

Thank you for your Welcome! It is great to find people who understand.

I have B Cell Lymphoma which apparently can be controlled, but not cured. My Rituxan maintenance is every six months for the next 1 1/2 years. Had the first infusions in the Spring; a set of four. I have heard that Rituxan is very new. The lymphoma was discovered in the Spring of this year. No Chemo. Just Rituxan.

My aches disappeared during the infusions, but came back.

Hope your treatment goes well, too.

Nancy

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Rituxan infusion last Wed. went well--no problems. Steroid kept me up night after, Thanks for the positive thoughts and encouragement.

Next follow-up Pet/CT and Oncology visit--1st week Oct. Lookin' for good reports!!! PTL

Most days I feel normal ---whatever that is?!

Hugs & Prayer for all--- Susan

NANCYL1
Posts: 229
Joined: Jun 2012

Hi again Susan:

Good that Rituxan Wed. went well for you.

My first infusion last May was without steriods, because I had been "hopped" up in the past from steroids with a CT-Scan. Had bad reaction from Rituxin without steroids. Now: always steroids! Sometimes am talking a mile a minute and feel as if I had a "three martini lunch" after steroids. Have a prescription for Lorazepam.

Saw Onc. doctor last Friday. Blood test results had improved. Feel somewhat better in the past couple of weeks. You feel "normal" most days? Sounds Good.

Good luck on your visit with the doctor and Pet/CT-Scans.

Long-winded,

Nancy

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