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8 Replies Latest reply: May 7, 2012 8:37 AM by porciniak RSS

New to this diagnosed with NHL large b cell diffused

Moreorles Registered Users
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I have been through 2 treatments and have experienced so many weird feelings I'm not sure which to worry about and which ones to say " it's only chemo". Any one else out there with this type of NHL? Any suggestions on side affects ?

  • Re: New to this diagnosed with NHL large b cell diffused
    kgirl Registered Users
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    Which type of NHL and what are you experiencing that is concerning you?

     

    Kgirl

    • Re: New to this diagnosed with NHL large b cell diffused
      Moreorles Registered Users
      Currently Being Moderated

      I've got large b cell diffused

      There are no side affects that really concern me, I think most of it is "chemo stuff". Besides the digestive issues, skin flaking off, losing your hair and being wiped out all the time, my legs are starting to feel like jelly, and I'm experiencingg wierd joint pain but I really think its chemo. I'm going to see the Dr tomorrow anyway.

       

      Thanks for the reply

  • Re: New to this diagnosed with NHL large b cell diffused
    porciniak Registered Users
    Currently Being Moderated

    Hi Moreories,

     

    Welcome. 

     

    I've fNHL, not large b cell; but, the chemo treatments are often the same; which chemo are you taking?

     

    Usually the onc's see you often enough that they can spot the serious issues; no sense worrying if they aren't  

     

    i was so busy worrying about keep my blood levels good, diet issues no neulasta, that the foot drop that appeared during round 9 or 10? was a source of amusement, lol.  But once I considered what the pounding was doing to my joints I decided i'd better report it

     

    Many people sail through chemo with just the expected taste changes, decrease appettite or increase depending on level of steriods and which round you're in.  Seems my last cource of cvp about half way through I was eating constantly.  That got very old very fast; thankfully it went away in just that one round.

     

    There ya have my thoughts, what symptoms are you experiencing now?

     

    dj

    • Re: New to this diagnosed with NHL large b cell diffused
      Moreorles Registered Users
      Currently Being Moderated

      Besides the normal stuff, hair and appetite loss, if found a host of other junk to deal with. Weak most of the time only  a few days a month I feel like doing anything. About 10 days after treatment it hit me and I've noticed my legs feel like jelly sometimes and my lips and tongue are numb, some days more than others. I've noticed some weird joint pain too but I've just chalked it all up to "chemo" stuff.

      • Re: New to this diagnosed with NHL large b cell diffused
        porciniak Registered Users
        Currently Being Moderated

        Ah yes, the 21 day cycle, lol, know it well unfortunately.

         

        I did find that the steroid gave me energy; did my shopping after infusion   freaked my sil out 'cause she was afraid I'd collapse in the middle of town.

         

        Then, there was the slow slide to no energy at all, about day 11.  I would go home after work that Friday and not get out of bed until Monday morning, well, except for the obvious    My brother sent me a lap top, that plus books, etc. kept em from being too sluggish.

         

        After low cell weekend I'd begin to get some energy so that the week before the next infusion I could clean house, shop, prepare meals for freezing, etc. etc.  And then it would start all over again.

         

        The pattern was reassuring and comforting.  To begin each cycle with a scrubbed house, food in the freezer, several days worth of protein shakes in the fridge kept me sane and healthy.

         

        It was kinda tough, though I got lots of laughs too.

         

        Feel free to come here and whine, cry, scream, laugh, whatever you need to help you get though this, k?

         

        We've all learned some coping techniques that we're willing to share.

         

        Be safe, <<hugs>> dj

      • Re: New to this diagnosed with NHL large b cell diffused
        FRAN641 Registered Users
        Currently Being Moderated

        dj covered all the stuff  I went through with wonderful chemo.  I had fNHL first then 3 month later transformation of DLBC, so I've had the joy of R-CVP x4 then R-CHOP x4 followed by 25 rounds of radiation.  Joy, joy, joy.  

         

        I had wobbly legs often.  About day 10 I actually started feeling better most months.  My energy level just never had a chance to recover from one treatment to the  next.  I finished up treatment in November and I'm still looking under the bed for that little sucker (energy) every morning when I wake up.  Seriously I do have 3 or 4 days a week now that feel  pretty normal then I'll have a couple days of butt dragging fatigue. 

         

        I wish you lots luck with your chemo and will be celebrating with you when you are told NED.........

         

        xo Fran

      • Re: New to this diagnosed with NHL large b cell diffused
        mcee Registered Users
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        Hi  Moreorles -- I had DLBC and went through R-CHOP.

         

        First session left me with the wobbliest legs I had ever experienced in my life, including times walking on the deck of a boat in rough seas.   I could do ok, had to go slow at times, and the first time I tried my usual semi-sprint up the stairs at work (I had the infusion on a Thursday and was back at work the next day) I almost collapsed, legs just went out from under me.   So live and learn, I to this day am very slow and cautious on stairs and I always hold the rail.  Once was enough.

         

        Things to look forward to:

         

        bone pain?    talk to your onco about Claritin or the generic version of it (not the extended release or fancier version).  It has been written about here on other threads, tis where I found out about it.  My onco had not heard about it but said it would not hurt.  I only had one bone pain event throughout the span of courses.  I started the day before the infusion and took it for a week or so.  That was probably more than I needed to, but for me it worked.  I'm sure everyone's mileage varies with it.

         

        hair fall out.  yes it does, some shave their heads.  I decided to go with the gollum look (hence the avatar) because I had a few strings that did not come out.   I think I wanted the full experience or something.  again, mileage will vary.

         

        Take the anti-nausea meds, sooooo worth it.  oh yes.

         

        preds:  you have been warned.  It causes strange behaviors in some.  I painted my kitchen ceiling while under the influence, at midnight on New Years Eve!   I'd start all kinds of projects, most of them are still sitting where I put them down, as here I am almost two years later, and still not quite up to cleaning up after myself (I live alone, only I get to trip over all the stuff).  I think preds are interesting, I loved them the first three days, oh did I get some things done, but the last two days and it was not pretty.   Surly, mean-spirited, I had to tell my co-workers to just ingnore me or stay out of my way.   I also cautioned my boss and asked him to please call me into his office should he hear me going ballistic on those two days.  He never did.  I had one melt-down at work, it was like 12 degrees outside, I had to do some driving daily for part of my job and my rig wasn't running right and a co-worker, bless him, expressed concern and I wept a bit and that scared him.   So one never quite knows that 'fun' the prednisone might bring.   one thing I found out worked for me was to get up at 4 a.m. and take the darn things.   I took them with coffee to mask the flavor (others suggest putting them in gelatin capsules from the pharmacy)....but I needed sleep and if I took them at 8 a.m. I'd be up and wired all night long.  Again, your mileage may vary.

         

        Skin issues:  I had the smoothest skin I've ever had in my life!  

         

        Sennokot moments:  ok, I was told to take that if things 'slowed down to a halt."   I took one.  bad mistake for me.  RCHOP for the most part kept my system running.  and me.

         

        Food:   I had read that beef would taste yukky.  I found out that beef was about the only thing that did not taste yukky.   I still cannot handle chicken or any commercially baked wheat products.  I don't know if it is additives or what, but I found it odd.  I lived on porcupine meatballs the entire time.   A childhood comfort food, beef.   Some suggest using plastic utensils.  I never did, but perhaps that helps.     Also, don't forget to wash all raw veg, you don't know who has handled it and your immune system is already under stress.

         

        Laugh.   and laugh some more.  laugh at everything. 

         

        if your clinic/hospital offers time with a counselor.  if so, make time to see the counselor.   I was not aware of the service until afterward, am seeing her now, and glad of it.

         

        chemobrain:  everyone has a different experience.   make lists, take notes.  I found out that since I had no eyebrows and was wearing a scarf and sometimes a mask and even gloves, most folk were very very kind and understanding if I was having a baffled moment.   There were jerks out there of course, but most people were so kind.  

         

        dental care:   I was told RCHOP can be hard on teeth, so brush and use the rinse if your doc prescribed it.  I think Jim had a recipe he shared for a DIY version.    Oh, some find they don't get the sores if they suck on ice chips during the red stuff part of the infusion.   (the O in CHOP).   Mileage may vary.

         

        Think of the money you are saving on shampoo.  Laugh.

         

        And, I bet you will find that rounds 3-4 are a breeze.   seems it adds up and 5 and 6 can be more fatiguing.   So get lots of rest, listen to your body.  

         

        It goes by quicker than you may believe.

         

        check in often, ok?

         

        mcee

        • Re: New to this diagnosed with NHL large b cell diffused
          porciniak Registered Users
          Currently Being Moderated

          mcee

           

          preds:  you have been warned.  It causes strange behaviors in some.  I painted my kitchen ceiling while under the influence, at midnight on New Years Eve! 

           

          One for the record books

           

          mcee wrote:

          :

           

          preds:  ...................but the last two days and it was not pretty.   Surly, mean-spirited, I had to tell my co-workers to just ingnore me or stay out of my way.   I also cautioned my boss and asked him to please call me into his office should he hear me going ballistic on those two days.

           

          He never did.  I had one melt-down at work, it was like 12 degrees outside, I had to do some driving daily for part of my job and my rig wasn't running right and a co-worker, bless him, expressed concern and I wept a bit and that scared him.  

           

          So one never quite knows that 'fun' the prednisone might bring.   one thing I found out worked for me was to get up at 4 a.m. and take the darn things.   I took them with coffee to mask the flavor (others suggest putting them in gelatin capsules from the pharmacy)....but I needed sleep and if I took them at 8 a.m. I'd be up and wired all night long.  Again, your mileage may vary.

           

           

          Good cautionary tale!  I had a great boss and was able to let her know if it was a day to institute my "no talk rule"  I was so ugly & cranky that I knew I could not be trusted to talk to anyone....   My job was mostly solitary; but there were occasions,.  This way I avoided any major rage scene's and all went smoothly.

           

          I didn't experience this with the short course of 6 CHOP; but with 12 rounds of CVP it was a major issue.

           

           

          As for food, I found that I could live quite nicely on protein shakes

           

          dj

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