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Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Hello all. I joined this site this afternoon, completed most of my "about me" profile, and have spent some time aquainting myself with the site and with some of you.

I was diagnosed with Follicular B-cell Non-Hodgkin Lymphoma, Grade 3A late last summer. I've had 8 sessions of R-chop chemo and have been in remission for about a month.  The plan, at this point, is maintenance Rituxan once every 2 months for 2 years. So I am very interested in that subject.

Like everyone else, I've had my share of side-effects from chemo and I have lost almost all my hair.

I have worked hard to maintain a positive attitude thoughout and I hope I can be of help and support to others.

I'm looking forward to knowing you,

Rocquie

 

 

 

Folks24
Posts: 96
Joined: Feb 2007

Welcome to the group. I had (hope it is gone now) B-Cell lymphoma and finished R-Chop and spinal shots in November. Diagnosed in April 2012 on a fluke CT scan. I've been back to work since Dec 2012 and have a followup CT and oncologist appointment the last part of April this year.

I am still trying to put on weight and add hair. I've got about 1 inch of hair and have a mini-mohawk going on. LOL. I wear my wig as that is not really my style.  The weight and hair is taking waaay long (least in my opinion) to come back.  I still need to get my stamina up too. But everyone tells me it will take awhile and to be patient.  I've worked to maintain a positive attitude too but it seems to be taking longer than I thought to bounce back. I live in the Midwest and hope Spring is finally here.

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Folks 24, thanks for the welcome. I too, hope spring is here. I also lost weight, but right now I am really enjoying eating everything, anything, and as much as I want to eat without any worriesWink  I look forward to getting to know you.

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

  Welcome to the jungle LOL. Been here since June 0f 2010. I have NFL Stage 4,Grade 1 with no symtoms. I went into remission in Oct.2010 and been holding steady since. I went thru R-CVP and then the 2 years of Rituxan. It is hard at times that I know , but certainly doable. The tiredness never totally goes away it seems. It does get better though. We have people on here that have different varieties of Lymphoma. It seems they are coming up with more types all the time. They have come a long way in the last few years with treatment as well, Just wish they would come up with a cure soon.  Again welcome to the site. John 

illead's picture
illead
Posts: 485
Joined: Aug 2012

Hi Rocquie,

     We too would like to welcome you.  Sounds like you have been through it (know R-CHOP is no picnic), but you sound very positive.  Bill has Mantle Cell Lymphoma and was treated with Bendamustine/Rit.  He did great on it and completed his chemo in Feb '12 and has one more year of Rit maintenance.  The chemo never made him sick and he did not lose his hair.  The Rit maint. doesn't seem to affect him but he does get tired but he's very healthy otherwise so just plugs through it.  He was a year in remission in Feb.  We are very glad to have you with us.  You will find this site a real help and you will feel good when you can encourage others.  Welcome again.

Bill and Becky

jimwins's picture
jimwins
Posts: 1980
Joined: Aug 2011

Hi Rocquie and welcome to the group.  Congratulations on your remission!  Your hair will grow back though it might be a little different than before.  Mine came back darker and I even lost some of the gray! Laughing

There are many folks here who have been on Rituxan maintenance and will be able to share with you.  One good thing is at least is you won't have to take prednisone/steroids so no more bouncing off the walls with that!  I had Diffuse Large B Cell Lymphoma and fortunately have been in remission now for about a year and a half.  My regime was R-EPOCH (very similar to yours).  There's more about my journey in the "about me" section.

I'm sure you will hear from many others soon.  Again welcome to the site.

Hugs and postive thoughts,

Jim

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Hi Rocqie and "Welcome",

  I was diagnosed in June of 2010 with Follicular NHL-stage3(no bone involvement) grade2(indolent)-typeA, and I'm 62 years old. Treatments thus far have consisted of 6 rounds of R-CVP and then 2 years of Rituxan maint which I finished in February. At present I am waiting to get my follow up CT scan on April 9th to see if I am in remission. If there is anything you need or questions, please don't hesitate to contact me. The support you will get here is very helpful and I recommend visiting regularly for friendship, support and comfort during hard and good times. My prayers and best wishes are with you. Much love...Sue

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

John, Bill & Becky, Jim, and Sue. . .thanks for the warm welcome. I really appreciate it.

I may not be quite ready for this. Yesterday, I felt good; today, not so much.  I have reached what I hope will be my last nadir. I'll give myself a few days for my blood counts to build back up and try again.

Rocquie

 

 

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Rocquie,

Welcome to our little family,

My treatment has been Rituxan only, my treatment consist of once a week for 4wk every 6 mo for 2yrs. I'm almost done with it, my last round will be in July. I did have a bad reaction to it but now I'm giving lots of medications before Rituxan, I know they will give you tylenol, benadryl I'm also giving two more for pain but I can't remember the names sorry. Hope you do well with it, I think this is a wonderful medicine and the best part is it doesn't have all the bad side effects like regular chemo. Take care and keep us updated on how you're doing. Take care

Sincerely,

Liz

Machir
Posts: 32
Joined: Mar 2013

Hi Rocquie,

Welcome. After reading your 'about me' I'd say you've come to the right place. There are a lot of positive people here. I'm Follicular as well. Diagnosed in 2004. A fellow 8 rounder of the R-chop and I did 2 years of maintenance Rituxan but mine was a little different. It was four weekly rounds every 6 months. I'm happy to say I was in remission for almost 8 years. Found out I had relapsed last October but have already finished a treatment using Zevalin and was told last week that it looks like I'm back in remission. My Rituxan experience was that there were very little side effects. I don't remember having problems with nausea or fatigue during the four weekly cycles and there was nothing with hair loss (I will say I had the same experience Jim did....my hair came back with much less gray and now nine years later it still isn't as gray as it was before I lost it). So the good news is I don't believe you'll have many issues with the maintenance Rituxan. Believe me it will seem like a walk in the park compared to your later R-chop rounds (if you were like me I was worn out and tired the last few R-chop rounds.....maybe more to the point I was tired of being tired). I hope the maintenance goes well for you. See what you can do to break my remission record. In fact do me a favor and smash my 8 years in remission by 3 or 4 decades. I'd be impressed and very happy for you. :) Take care. Mac

GKH
Posts: 288
Joined: Jul 2012

I am on Rituxan only therapy for Stage IV indolent FNHL with bone marrow involvement. I initially had one 800 mg infusion per week for 8 weeks. Since then I receive one 800 mg  infusion every 8 weeks for at least 2 years.i have seen the good, bad and ugly of Rituxan and would be happy to try to answer any questions based on my experience. It seems to be a little different for each patient .

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