The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 300. Re: Hi- New to the group
    MrPat Registered Users
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    Hair, OMG your age is showing.

  • 301. Re: Hi- New to the group
    jgold Registered Users
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    Yep.. I am a 50's baby.. and proud of it .

     

     

    Age could be seen by hair color.. Oh hold, what hair.... double

     

     

    Jim 

  • 302. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    Ah ... Hair.

     

    What a stab from the past.  I worked that musical in Seattle, in the late 60s (not a cast member, though).    But by the time it was done I knew all the lines, the music, the blocking.   It was a fun time for sure.   

     

    haha ...  at that time I had hair that was 1/2 inch long.    I was counter-counter-culture I suppose.

     

    and look at me now, hair that is almost 1/2 in long, in spots.  More like mange ...

     

    mcee

  • 303. Re: Hi- New to the group
    mcee Registered Users
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    lovely art project.

     

    here's my fav:    http://www.museumofbadart.org/

     

    hilarious, considering art is in the eye of the beholder, but some of the commentary and the titles they've blessed some of the works with, too much fun.

     

     

    mcee

  • 304. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Mcee:

     

    Thanks for the link.. yep art is in the eye of the beholder...... but some of the color combinations look great... now if only I was not color illiterate

     

    Jim

  • 305. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Well had the first Rituxan manit. last Wednesday, all went well.

     

    Doc check-up before infusion went well, blood work is normal, and at least not lymphatic glands palpable.  Will have a new set of CAT Scans in May as well as a bone marrow aspiration again .

     

    Yes it is still a rather slow process once again, took about 6 hours, 1 hour for benadryl and Acetomynophen to take effect, 4 hours for Rituxan and 1 hour for NaCL infusion post Rit.

     

    Doing well, with the exceptioon of slight cramping which started the day after infusion and has all but stopped by today, (the third day). Oh before I forget, yes I also felt a little more tired and lost a little appetite.  Tiredness getting better, hope appetite slows down a little, need to loose the extra pounds I gained .

     

    Now time to get ready for yard work and later today enjoy the soothing sounds of Sir James Galloway http://www.jamesgalway.com/ at the Grand 1984 Opera House in Galveston Texas.

     

    Jim

  • 306. Re: Hi- New to the group
    moftexas Registered Users
    Currently Being Moderated

    Hey Jim.    I know what you mean about the weight gain.  I haven't lost the 10 pounds I gained from the steroids and it's been a while.  I too am a stage 4 patient of FNHL at MD Anderson.  I finished my treatment in September 2010.  Have been in full remission and doing well.  Still some low blood counts which the doc says may be my "new normal".  I'm beginning to hate that phrase.

     

    The bone marrow tests are my least favorite, so I opt for ane

     

    Anyway, good luck with your maintenance Rituxan.  Good to see you're enjoying yourself - great weather this weekend to be in Galveston.

  • 307. Re: Hi- New to the group
    MrPat Registered Users
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    Hi Jim:

     

    Glad the Rituxan infusion went smoothly (I knew it would). Yes the infusions take up most of the day, but a good book and a MP3 player makes it go faster. Enjoy the yard work!

    Pat

  • 308. Re: Hi- New to the group
    JudyColorado Registered Users
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    Great to hear from (some of) you folks!  I assumed all was well with the quiet.  Everyone enjoying spring.  Thanks for the update on the start of your R maintenance Jim.  It's nice to know the process is tolerable.

     

    I'm officially in the 'watch and live well' mode now.  Went to University of Colorado for a second opinion and the Onc. there concurred.  He did have a different opinion on treatment when the time comes and talked about various clinical trials.  It was interesting and hopeful.  Yes, hopeful. 

     

    Take good care all - hope to hear from some of the rest of you!

     

    Judy

  • 309. Re: Hi- New to the group
    mcee Registered Users
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    Hiya Jim....

     

    glad to hear the maintenance went well.  

     

    Frankly, I was wondering why they scheduled my maintenance for six hours.    I figured it took about three hours during the RCHOP, so why the extra three?   (nobody said NaCL was included though, isn't that just saline?)   Nurse said they have to infuse slowly the first time, just like with a newbie, since it's been some time since the last round.    So it takes longer in case there's a reaction.

     

    I was so hoping I could do this in a 4 hour window so I could schedule for right after noon and not be missing a whole day at work.  Oh well, at least I have sick leave again, but where I work it all gets applied as usable at the new year and I was really fortunate that I was able to use 'holiday' hours for my last two infusion, so I've only taken one sick leave day this year, on purpose on the day following my last RCHOP.

     

    Do they give more R on maintenance?    Of course I am not sure which way they are doing yours, my Onco says I'll get a treatment quarterly, maybe they give more so it stays around longer, half-lives and all.   Do you know? haha I did not ask him.

     

    I figure I'll not get too wiped out by it, unless they do the IV steroid along with the benedryl.   if it is just benedryl and acetominopehn, I figure life will go on and hair will continue to grow (I am now looking a whole lot like your icon).

     

    I am sure looking forward to my PET scan so I can get on with this next stage.

     

    We are all blessed.

     

    Cheers!

     

    mcee

  • 310. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Mcee. I'm fairly sure its just the benedryl and acetominophen befor the R. It should be a "peice of cake"

     

    Cheers

  • 311. Re: Hi- New to the group
    moogaw Registered Users
    Currently Being Moderated

    Hi Jim,

     

    I've been reading about your maintenance and have a quick question - Is maintenance something we all do following Chemo or is it on a case by case basis?  My doctor hasn't really said anything about it, but then again I'm only half way through my treatment so maybe it's something he'll talk about later.

     

    Glad that you are doing so well!

     

    Cindy

  • 312. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Well......... First Mcee... all I got was the Acetomynophen and Benadryl... NO more Prednisone.

     

    Cindy..... Rituxan maint seems to becoming the mode of operation, but it is still dependent onthe Oncologist.  The insurance has accepted this form of long term treatment (Pat is in a better position to comment on this part).

     

    One thing to keep in mind, Rituxan maint.. does/can reduce your ability to fight infections, so you have to be careful.

     

    Cindy, when you meet with your Oncologist, why not ask if you will be put on Rituxan maint.

     

    Best on the next treatment, you are almost finished..

     

    Jim

  • 313. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Hi Cindy, Rituxan recently went from "experimental" trials to approved for maintenance therapy by the FDA. Once that happened the Onc community began to make the therapy a standard. Insurance companies can no longer deny claims for this as being experimental. As long as it's medically necessary, they will pay. The  Rituxan trials proved to have had great results with the maintenance therapy. If I remember correctly the increase in the mean remission time increased 50%. Good news for all of us. Ask your Onc about his plans for treatment following chemo. I bet he or she says you will have Rituxan maintenance.

  • 314. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    I am ok with just benedryl and acetomin...but I may ask for a touch of Ativan, for old times sake (I still have port anxiety) and a way to get in a great nap.    The mix of the three is excellent sleep for me.    

     

    These days, I need it.    Now the long week wait til I see my onco about the scan, and get my first maintenance, or heaven forbid, we have to regroup for something else.    But I am pretty darn sure this stuff is gone.   like, forever.    

     

    Hey Jim, is Ritux any kind of a hassle or just like any other new normal day once you get it?   It always seemed as if it was the most benign part of the chemo, no nausea, no nothing except followign the first infusion when it kicked the you-know-what outta all the nodes and that doorknob thing I was growing on my neck.

     

    Yep, I must be cleared out, or that doorknob would have come back.  It sprouted to full size in less than two days.   I check the area all the time, and there be nothing anywhere in the area or elsewhere.

     

    and tis very good Rituxan does not make hair fall out.    I'm growing it in, it almost feels like hair again, and there's only one spot left that has not filled in as much as the rest...but my scalp is less noticable (still there showing through but not PINK!!!).   another month and no more head gear methinks.

     

    oooo also, I finally got a full dental exam by my new hero dentist, with all kinds of x-rays and that pocket checkign they do with the giant sharp thing, and he says my mouth it perfect, but there's one old filling that a little bit has fallen out, no decay just rough, and since it is almalgam, I told him let's get that out and put in composite and he said great...but no more root canals or other scary things are lurking.   whew!

     

    be blessed, all.

     

    mcee

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