The Leukemia & Lymphoma Society - Fighting Blood Cancers
37 Replies Latest reply: Nov 24, 2011 4:28 PM by jprice1355 RSS

Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

jprice1355 Registered Users
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Just saw my onc today - I was really surprised that I have this stuff on the left and right sides of my groin, in a single node near my left clavicle and in my bone marrow.    However, once I found out it was in my bones (and I've been having pain in the bones of my left leg), it was not a difficult decision to start treatment.    My doctor was ready for that and got me set up for my first go around next Tuesday.   I'm to do one treatment a week for four weeks every six months for two years.    I really hope the stuff works - I read every discussion on this topic that I can find on these boards and realize that each case is different, so we won't know until we get into this.   Fortunately, my first series will be over before our group insurance at work changes (effective July 1).    Any Rituxan experts out there that can give me some advice????

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    Jeri Registered Users
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    Hi  JPrice,

    Sorry about your diagnosis (dx), but glad you have found these boards quickly.  I'm a fellow fnhl'er, and was dx'd 6 years ago in June '05, grade 1, stage 3 (wasn't in bone marrow, but was in almost every single lymph node area). 

     

    My Rituxan experience:  I started treatment (tx) in Aug. '05, in a Rituxan dosing clinical trial.  I had 4 tx's and had an amazing 3 years of remission.  I had a minor relapse in the fall of '08 and started treatment again in 1/09.  I  had 4 tx's in Jan. '09 then went off protocol from my clinical trial (I was in an arm that I was only supposed to have 4 weekly Rituxan at each relapse) and I had 1 year maintenance of 1 tx every 3 months through Jan. '10.  I haven't had a scan since last summer and have one this coming Monday, so will see if my luck is holding out.

     

    My experience with Rituxan has been amazing.  I had a pretty bad reaction with the first one (throat started closing up), but I've never had an issue with any other treatment.  I was always pretreated with tylenol and benedryl, and sometimes, though not always, with the steroid decadron. 

     

    I hope it works as well for you as it has for me.  I think it's a great frontline therapy.

     

    Best wishes and hugs,

    Jeri

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      jprice1355 Registered Users
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      Thank you so much for your response, Jeri.   I'm still grappling with the fact that I have CANCER!!!!     I have a few more questions if you don't mind.......like how did you feel afterwards?   Were you able to work the next day?    Is there a cumulative effect with this drug like some of the others?    Will I be pretty?  Will I be rich?? (Please don't say que sera........)

       

      Good luck on Monday - I'll be watching for your results!!!!   

       

      Thanks - and hugs to you too.

       

      Jo

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        Catman Registered Users
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        Greetings JPrice,

         

        As you know everyone's body reacts differently to treatments, but I thought I would share my experience with you.

         

        I was dx with fNHL (Stage IV, grade 2) in May of 2010.  The lymphoma spread to my intestine, so I had a section of it removed in October of last year.  In November, I had 1 Rituxin treatment per week for 4 weeks.  I had a PET/CT scan in late January, two months after my treatments.  The result was that I was NEDD (no evidence of disease detected).  I am now getting 1maintenance Rituxin treatment every other month.

         

        The first Rituxin treatment can be a little rough.  It is very common to have an allergic reaction, which is why they give you anti-histimines first.  The first infusion can take a long time.  Mine took about 8 hours because I had several reactions during the drip which meant they had to stop the drip, give me more anti-histamine and then slowly start the drip again.  Bring a good book, laptop, iPod, etc.....After the first treatment, my reactions have pretty much all stopped.  Once they start the drip, it now takes 1 1/2 - 2 hours from start to finish.  I call it the speed drip method.

         

        After the treatments I get wiped out.  I walk back down to the car and my wife drives me home, we live about 2 1/2 hours from the hosptial I'm treated at.  I sleep pretty much the whole way and then rest after I get home.  The next day I feel fine.  In fact, I always get up and go running........you know.......just to show the cancer who's boss .  However, although I feel fine physically, I do find I'm a bit hazy mentally the next day.  I honestly don't know if it just because I am tired from drving into Boston, having a treatment, and driving home or if the Rituxin makes me that way.  Regardless, I always work the next day.  I just plan a lighter day for myself.

         

        In short, Rituxin has been very good to me.  It has been very effective with virtually no side effects.  If I have to go in and get my "oil changed" every other month with a Rituxin maintenance treatment, that is O.K. by me.

         

        Hang in there.  Mark my words.  You've got this!  Go get 'em.

         

        Catman

        • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
          jprice1355 Registered Users
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          Thank you for sharing your story, Catman.    It really helps to hear what others experience, even though I know everyone is different.   I'm worried about the allergic reaction - I've had that experience before with my allergy treatments, so I hope they can control it with the R.     You actually run the next day???    That really made me happy to hear!   I've been worried about how all of this would affect my exercise schedule (among other things of course)  and hearing your story made me think "eh, not so much!"    I feel like I've been hazy mentally since this whole thing started - dear me, what will I be like after treatment???   At least I don't have to wait long - D Day is this coming Tuesday.

           

          I looked up your profile and read what you expressed about being sorry you have cancer to your children.  (It made me cry.)   You are a very thoughtful person.  I'm going to visit our only 19 yr. old daughter at college today - YAY!!   She's coming home Saturday and we haven't told her anything about this business.    I figured she needed to enjoy the last few days of her sophomore year before she has to come home and hear about this - even though I have EVERY intention of living for quite a long while!!!!! (See how strong your post has made me??)    

           

          Here's hoping that Rituxan will be as successful with me as it was with you and Jeri!!!!    I'm ready to kick the Big C's Butt!!!!

           

          Thanks so much for your supportive post - stay well.

           

          Jo

          • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
            Catman Registered Users
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            Jo,

             

            After I was diagnosed last spring, I started eating a very healthy diet and excercising every day.  As a result I've lost 35 lbs and have never been in better shape, including the 4 years I played college football!  In fact,  I'm doing my first sprint triathlon of the season on Saturday.  Rituxin hasn't impacted my excercise at all and the excercise has been HUGE for my mental well-being.

             

            When I was diagnosed a wise man on this list told me that it was my opportunity to show my children how to face adversity in life, because although we want to protect our kids, they too will have their own challenges.  Have a great time with your daughter!  Laugh, cry, share, connect and celebrate.  THAT is what life is about. fNHL just magnifies and concentrates the truth.

             

            I'll be thinking of you on Tuesday.

             

            Catman

            • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
              jprice1355 Registered Users
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              Catman - congratulations on your healthy lifestyle - WOW losing 35lbs!   AND participating in sprint triathlon (is that a triathlon with shorter distances for each segment?).   My husband was an avid runner when we started dating in the 80's.   He tried to convert me, and I jogged for several years, but my knees and ankles didn't care for it.  I was already working out when I met him, and exercise has been part of my routine for most of our 26 year marriage.    I've been doing Jazzercise for the past four years (because I find it very difficult to motivate myself consistently).....I can't believe the definition I can see in my arms have this spring - look out Michelle Obama!    I also stopped eating meat about four years ago - I simply don't like it was a relief when I made the decision to stop making myself eat it.   I cook all my own food from scratch now - and rely primarily on different types of beans for most of my protein.  It's so much more healthy - includes lots of fresh fruits and vegetables.   And I'm learning about new herbs and seasonings - so much so that I'm really impressed with some of the dishes I make!!!   I've lost 26 lbs and need to take off some more........................

              Had a great day with DD yesterday - we have a fabulous lunch too - who knew you could find decent polenta in Galesburg, IL?????

               

              Thanks for the good thoughts!

               

              Jo

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        Jeri Registered Users
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        Hi Jo,

        Over the years on these boards I have seen people have different reactions.  Some not bad, and some where they just couldn't tolerate it at all.  I was usually tired the day I had treatment, I think more from the Benedryl than anything, and I had tons of energy on subsequent days, the wonderful effect of a steroid - got lots of cleaning done those days.  There was not a cumulative effect.  And of course it will make you rich and beautiful !  I hope my success has given you some hope.  I remember when I first came on the LLS boards, which was right when I had started treatment the first time, how I was so happy to see people that had survived as long as I have now done so.  It took me a long time to get over the shock of having cancer, but eventually I did, and now I just stress on the scan appointments a little.

         

        As for kids, I have 4 of them.  At the time I was diagnosed my oldest was 15 (almost 16) and youngest was 7.  It was very hard to tell them.  So here I am 6 years later ~ my oldest has just graduated college, 2 others are done high school and in college, and the youngest is in middle school.  I was so afraid I wouldn't get to be here for all these moments.  I am so grateful that I have.  I have learned along the way that it's best to be up front and honest with them.  Unfortunately 3 years ago my husband was diagnosed with head/neck cancer along with an unrelated spinal cord tumor.  He's doing wonderful.  My kids have been through a lot, to say the least.  It always amazes me how resilient they are, or may be they just don't really understand because they can't fathom the unthinkable.

         

        Keep us posted on how it goes!

         

        Hugs, Jeri

        • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
          jprice1355 Registered Users
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          Goodness, Jeri - you have been through the wringer - and more importantly, you are still strong!   And YES you have given me more than hope, (I was reading about your journey before you posted your response to me.   I kept thinking "i want to be like her!!!")  I'm going to get through my treatments and continue to thrive.   Energy to clean???!!!!   Not sure I've ever had that, so maybe I'll just chalk it up to the silver lining effect of getting treated for cancer.      It does take a while to get used to having this - I've started talking about it with some of my friends.....at first I think they were put off by it, but they are becoming a little more comfortable now.   One person even told me how fabulous I looked (wait until I have the treatments that will make me beautiful and rich!!!!)  I don't want to upset them, but I do want people to know that a diagnosis of cancer is not the end of your life.  

           

          DD is coming home tomorrow - we'll have a quiet talk about this.   Like Catman said - this is an opportunity to be an example for her - to show her how to deal with life's little unpleasant surprises.  I want to be a role model for her because in today's world - who knows what she is going to have to deal with.   If I can accomplish that - at least I will have found some meaning in having this disease.

          • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
            Jeri Registered Users
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            Jo, you are way ahead of me already than when I was dx'd.  I had more than my share of self-pity parties, though generally just with myself, lol.  Honestly, I would not have ever been able to get through all the things I got through without the people in my life, and I very much count the people on these boards in that group that I've been fortunate to come to call friend.  This has been especially true through my husband's health issues, and he didn't even have a blood cancer.  Cancer is cancer though, I suppose. It's funny, but I more often than not found myself comforting the people I'm closest too, which was hard for me as I needed comforting.  I found that comfort here, along with compassion, empathy, courage and hope, and most of all, understanding.  I hope you find these things too.

             

            Oh, and as for the cleaning, I'm not a big cleaner, lol, but I found it was a good way to use all that energy.  Other times, I painted.  These are two of my most hated things to do, but for some reason I liked it then.  Strange.

             

            Good luck in your talk with your daughter.  It's hard, but you both will get through it.

             

            Hugs, Jeri

             

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    tem0627 Registered Users
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    The only rituxan advice I can give is to ask your doctor to run a HAMA - Human Anti-Mouse Antibody screen.  About 1% of people are allergic to mice and if you are, this chemo can be bad news... as I found out!  If you feel any chest discomfort/pressure during the infusion, let them know immediately!

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    MrPat Registered Users
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    Hi Jo:

     

    Rituxan is easy after your first infusion. They did my first infusion in the hospital just in case I had an allergic reaction. I had a slight reaction (throat swelling up, but nothing real bad. My reaction also had some interesting other effects. It was kind of like getting an instant cold with a sore throat, sneezing and stuffy nose. The weird reaction was that my ears itched....inside the ear canal. I have never experienced that before. All these symptoms were gone that night. The next infusion had a similar but much smaller effect. By the time i had my 3rd infusion, I had no ill effects.

     

    Have plenty of water bed side. This helps you swallow. Plan on a long first infusion. Mine took 6 hours. The subsequent infusions are 4 hours. Before you have the infusion you will be getting an IV of Benadryl. That may put you to sleep. Have some =one as a designated driver the first time. After many infusions I know drive on my own. Good luck!

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    Catman Registered Users
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    Go get 'em today, Jo!!!!  You're in my thoughts and prayers.

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      jprice1355 Registered Users
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      Thanks for all of your support, Jeri, Catman and Mr. Pat.   I MADE it!!!!   I had a little glitch around 120 mins in - drip was stopped and I got a steroid - drip started again and rolled right through to the end (six hours).  I had already been given benadryl prior to the rituxin (my sinuses hadn't been that clear in years), but I started getting a sore throat and stopped up - when I told the infusion nurse she was concerned and got the prednisone.  Then I was finally able to take a nap for a while - and when I woke up, I was able to concentrate enough to read a book - and the it was over.   My onc told me that my blood work looked great.  I kept a copy of it, but I have no idea what it means.........I'll just keep it for comparison.

       

      BTW - I drank 64 oz. of water and a 16 oz latte while I was being treated Mr. Pat.    I spent a lot of time going to the bathroom. 

       

      One down, three to go  for this round! 

       

      Have a great week everyone!

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        Jeri Registered Users
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        I'm so happy it went well for you Jo!  The next 3 will be a breeze.  After my 1st one, I think the others took about 2 to 3 hours.  Just enough time for a nap after you get going !  I remember (and I can't believe I still do as it's been almost 6 years) that the same night I had my first infusion I could literally see a node in my neck go down.  For what it's worth, I've been told if you have a reaction that that is a good thing, as it means it's getting in there and doing it's job.  I know it's worked well for me, so perhaps there's truth to that, as I had a pretty good reaction the 1st time.

         

        Anyways, glad it went good!

         

        Hugs, Jeri

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        Catman Registered Users
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        Way to go, Jo!  Well done.  One treatment at a time.  And don't forget to treat yourself to some rest and relaxation, as well as letting those around you pamper you a bit.  You deserve it!

        • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
          jprice1355 Registered Users
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          Thanks to both of you for all of your support!!!!!    I'm taking a vacation day after each treatment - mostly so I can go to my Jazzercise class in the morning, but also to give me some time to relax.  (No cleaning this week, Jeri - but I did cook a lot yesterday!)    Maybe I'm really naive, but what really stunned both my husband and me was the number of people being treated at the same time that I was!   There must have been over 50 people in and out of that infusion center on Tuesday!   This was only one day - and only one of the sites in a city of 129,000 that does this!    My family has a history of cancer and it has always been one of my charities, but I was just stunned to see the number of people being treated for it.    Thank God our medical community has the knowledge that it now has!

           

          Gearing up for next week's go-around.   Think I'll make some lemon-blueberry biscotti for the nurses - they were SUPER!

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    NewJez Registered Users
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    Hi guys - is taking Rituximab by itself a trial or is it something specific for your diagnosis. I've useually heard of it being taken with other combinations. I'm just curious. I'm down for rituximab maintenance soon, and I appreciated your comments. Because I have taken it with chop, and are now taking it with Fludarabine, I wasn't sure how the rituxin itself was affecting me.

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      Catman Registered Users
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      Heyt NewJez,

       

      As miraculous as Ritixin is, I think they are still trying to figure out how best to use it.  My understanding is that the use of Rituxin by itself as a front line treatment and/or a maintenance treatment is becoming common practice.  That's just based on what I have seen and read.  Always best to check with multiple sources.  My next R treatment is Monday.  I've gotta have it every 3,000 miles. ; )

       

      Good luck with your treatments.

       

      Catman

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      Virgogirl Registered Users
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      Hi NewJez,

       

      I did CVP-R almost 3yrs ago and finished 2yrs of Rituxin maintenance last November. I had no problems with Rituxin by itself. I did 1x every 3 months for my fNHL. I always enjoyed the Bendaryl nap that came with the treatment.

      I was most grateful for the fact that when I shifted to maintenance the Bendryl also shifted to 50mg of oral versus the 50mg IV which I hated! I would get the jitters with the IV and it always took me  45 minutes to adjust to it.

       

      Other than some anemia and my WBC finally getting above 4.0 in February I am feeling great.

       

      Jo, Good luck and hang in there, Rituxin is a wonderful treatment for fNHL.

       

      Judy

  • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
    jprice1355 Registered Users
    Currently Being Moderated

    P1010426.JPG  

     

    I haven't posted in a while, but I've been keeping up with the boards.   Cindy are Fran, you are both in my prayers -  I'm following your progress and I look forward to the day you are both NED.

     

    We just participated in our first Light the Night Walk in Davenport, IA.    Our daughter, Monica, arranged for her sorority to partner with a fraternity at Knox College in Galesburg to make up the team, "Mama Jo."   I was so impressed by these students who gave up the Friday evening of Homecoming Weekend to participate in the walk!    I was also impressed by the number of participants from the area around Davenport.    What an outpouring of support!  It was a blustery evening - when the balloons took off - they were GONE in a few seconds.  

     

    My next PET scan was just scheduled and I'm starting to fret about it, even though neither I nor my oncologist can feel the nodes that were the original problem.   I'm scheduled for my next round of infusions starting December 6.  

     

    Happy Thanksgiving everyone.   

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      FRAN641 Registered Users
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      Jo, I love  the photo with  all the kids cheering you on. Thanks so much for keeping up and I keep you in all my prayers.

       

      xo Fran

    • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
      Jeri Registered Users
      Currently Being Moderated

      Love the photo Jo!  My husband did a 100 mile bike ride for LLS TNT in October.  It was a wonderful event.  His team raised $7,800, and I was so proud of him !  The event wasn't an LLS specific ride, but they had around 200 TNT members, so that was fun cheering them on.

       

      As for the scanxiety ~ oddly enough it's something I've learned to ignore over the past 6 years.  I've had so many of them, I'm more concerned about the effect of them now, than the actual results of them.

       

      Hope yours show some wonderful results!

       

      Hugs, Jeri

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        hilton8433 Registered Users
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        Hi Jeri!

        Congrats to your husband on his TNT event!!  They are so amazing.  200 members is wonderful and so is his fundraising!  I am an LLS (light the night) fundraiser myself, and also work for LLS:)

      • Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....
        jprice1355 Registered Users
        Currently Being Moderated

        Hi, Jeri - I've been terrible about keeping up!   Good to hear from you and congrats to your husband on the TNT event.   That's a LOT of miles on a bike!

         

        Hope you are having a fabulous Thanksgiving!!!!!   It was just the three of us here today - but that was very special.   We really enjoyed our meal.

         

        The Illinois State Board of Education, where I work, has been in a state of flux for the past four years - SO, after 33 years there, I have decided to retire February 29, 2012.    The best news is that my actual last day of work could be as early as January 27, 2012, since I need to use up my vacation time (or lose it, and I wouldn't want that).   I've been so excited about this, I can hardly sleep.

         

        It's made waiting for the PET scan a little easier, somehow.    Right after the onc's office called me to let me know it had been scheduled, I started getting all these weird pains where the original nodes were.   I don't know what all that was about, but I'm not having them now, and the original nodes are still too small to locate.   I've just decided the best thing I can do is to go in with a very positive attitude on Monday.    Then Dec. 6, back to the infusion center.

         

        Take care - enjoy this weekend.

         

        Jo

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