The Leukemia & Lymphoma Society - Fighting Blood Cancers
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The journey continues - Part 7

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  OK, you might be wondering where "parts 2-6" went (LOL) - they went.....nowhere!  I decided to jump right to part 7 because, as those of you who've been walking the journey with me know, I'm in the middle of Round 7 with follicular b-cell NHL.  You might also wonder why I'm starting a new thread.  Basically it's because my other thread has so much stuff on it, that it takes forever for it to load and manuever through.  So instead of buying a new, faster computer I decided to start a new thread (no decision making and much cheaper - LOL)

 

So I'll update again after my doc's appointment next Wednesday, the 13th.  Have a PET on Monday and already know I will light up like a Christmas tree.  Knew that months ago but held off until after the holidays to begin treatment.  After Wednesday I'll know when we'll start and share with you.

 

Thanks for hanging with me.  I anticipate the Treanda may be a little more harsh on my system than prior chemos but, as always, I remain determined to get up off the ground one more time than my tushy is knocked down.  As I heard in a video - I'm not battling cancer....cancer is battling me! and it's chosen the wrong chickadee to pick on.  LOL

 

Hugs to all.....  fasten your seat belts and keep your arms and legs inside the ride at all times.  Here we go........  

 

Roller Coaster

 

Sharon

  • 1. Re: The journey continues - Part 7
    Jeri Registered Users
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    Hi Sharon,


    Yup, a new thread is cheaper than a new computer for sure!  Much easier to set up too!  Hang on for the ride!  We're on it with you!


    Hugs, Jeri

  • 2. Re: The journey continues - Part 7
    CookieMonster Registered Users
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    I'm here and strapped in girlfriend!!!  I'll help hold that seat bar down so you don't tumble out whenever the ride begins again. 

     

    Hugs of love,

    Jane

  • 3. Re: The journey continues - Part 7
    CarolSings Registered Users
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    Here's sending you many angels and good thoughts.  Affirmation for you:  "The cells in my body are becoming balanced and whole.  All treatments I receive are now healing my body, mind and spirit.  Many prayers and positive attentions are coming my way."  Here's a whole mountain range of love and support coming at you.  May all the love you have given come back to you a thousand fold and bring you health and wellness.

     

    Carol

  • 4. Re: The journey continues - Part 7
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    Cheerleader Toss 2 Thank you ladies.  And may I say you all look quite stunning in your cheerleader uniforms!  LOL

     

    Bless your hearts and souls.  And, Carol, that affirmation is beautiful!  I'll print that out and put it in my office as well as here at home so I can see it often - I need the reminder.  All is well....and this too shall pass.

     

    Hugs all around!

    Sharon

  • 5. Re: The journey continues - Part 7
    dawnsie123 Registered Users
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    I am also riding the roller coaster with you but one that is flat - otherwise I will toss my cookies.  Also I am cheering on the ground for you -  I dont like heights either - ha ha.  I am routing for you .  Dawn 

  • 6. Re: The journey continues - Part 7
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    Hey there and Happy Wednesday.... promised an update  so here it is.  (Those of you I've emailed - please disregard, you already know this stuff.  LOL)

     

    Had my oncologist visit today to see the results from Monday's CT, last weeks labs, and where the heck the next pathway is.  Results are labs (blood counts, etc) all normal, CT showed pretty much what I thought it would with a goodly amount of superficial "little guy" enlarged nodes but nothing to be concerned about at this point.  However..... (you knew there had to be a "however", right?),  there is a fairly sizable "node conglomerate" and one single node of significance in my pelvis.  The conglomerate measures 6.5 x 4.1 cm (2.5"x1.5") and the loner is about 4 cm.  Wouldn't be concerned as such except they are both fairly close to my bladder.

    Now for the options - W&W (of course); or a new form of highly targeted radiation on just the pelvic masses (but can be done only in Phoenix at this point and would be daily for many days in a row - decided that's not an option); or Bendamustine - which I'd pretty much decided on anyway. 

    Up til the point of learning about the pelvic masses I was ready to just W&W for 3-6 months, evaluate and go from there.  But with them being so close to the bladder, they could continue to grow and encroach and cause me other issues.  Sooooo....hi-ho, hi-ho, it's down the Benda path I go.   If the little guys take a hike but the pelvic ones stay around, then I'd consider the radiation. Still shooting for the last week in Jan or the first week of Feb. start date.  Will do 3 rounds of Benda and then CT again.

     

    At this moment, all is good and well.  Let's hope it continues that way.  This is a new path for me so those of you up ahead on the trail or who've crossed the finish line already, if you have any pitfalls and things for me to do to avoid twisting an ankle, chime on in here, please!

     

    <back to drumming my fingers> 

    Sharon

  • 7. Re: The journey continues - Part 7
    Jeri Registered Users
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    Thanks for the update Sharon!  How often will they do the Benda?


    Hugs, Jeri

  • 8. Re: The journey continues - Part 7
    Registered Users
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    Hi Jeri -

     

    Benda can be a 21 or 28 day cycle.  I'm waivering on which one I want to go with.  21 would probably be a bigger 'hit' on the peskies but 28 would give my poor ol' body an extra week to recover.  Thinking this choice over.

     

    How are you and your DH doing?  Are you all finished with maintenance or getting ready for another round?  John still having good check-ups?  You two are amazing!!

     

    Hugs

    Sharon

  • 9. Re: The journey continues - Part 7
    Jeri Registered Users
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    Hi Sharon,

    What are the side effects ~ if I weren't so tired right now, I'd go look them up.  Does it affect your counts?  That would be hard to decide.  Did your onc have an opinion on either way?


    I had my "last" Rituxan today.  I say last, because she left it a little up in the air.  As always, I finished tx feeling a little bittersweet, as you know you're never really finished with this stuff.  So it's just done for now . . .


    John's doing well.  Stressing at work, but has learned to deal with it better.  Though he is overwhelmed enough he forgot I had my last tx today, so I was a little sad with him about that.  He has his CT and follow up early Feb., which reminds me I need to schedule his CT.  Maybe I'll forget to - lol. 


    No more amazing than the next person, just like being alive .


    So now I'm gonna go look up your Benda as I'm very curious.


    Hugs, Jeri

  • 10. Re: The journey continues - Part 7
    Jeri Registered Users
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    Ok, Sharon, so I'm sure you've done the studying up on it, but thought I'd post from NCI's website:

     

     

    The safety of bendamustine hydrochloride was evaluated in the above study and an additional study. A total of 176 patients with B-cell NHL who had received prior rituximab (161 patients with indolent lymphoma and 15 with transformed NHL) were evaluated for safety.

     

    The most frequently reported non-hematologic adverse reactions reported were nausea (75 percent), fatigue (57 percent), vomiting (40 percent), diarrhea (37 percent) and pyrexia (34 percent). The most frequently reported abnormal hematologic laboratory values were lymphopenia (99 percent), leukopenia(94 percent), anemia (88 percent), neutropenia (86 percent), and thrombocytopenia (86 percent).

     

    Grade 3 or 4 adverse reactions were reported in 71 percent of the combined safety population. The most frequently reported non-hematologic grade 3 or 4 adverse reactions were fatigue (11 percent), febrile neutropenia (6 percent), and pneumonia, hypokalemia and dehydration (each reported in 5 percent of patients).

     

    The most frequently reported grade 3 or 4 hematologic laboratory abnormalities were lymphocytopenia (94 percent), neutropenia (60 percent), leukopenia (56 percent), thrombocytopenia (25 percent), and anemia (11 percent). Three patients died from myelosuppression-related adverse reactions; one each from neutropenic sepsis, diffuse alveolar hemorrhage with grade 3 thrombocytopenia, and pneumonia from a cytomegalovirus infection.

     

    For patients with indolent NHL, bendamustine hydrochloride is administered as a 60 minute IV infusion on days 1 and 2 of a 21-day cycle for up to eight cycles. The recommended dose is 120 mg/m2.



     

    So, hmmm . . . lots of stuff to go on with it.  Guess I'm spoiled with the mildness of the Rituxan.

     

    Hugs, Jeri

  • 11. Re: The journey continues - Part 7
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    Hi Jeri,

     

    Don't know how I missed your post yesterday other than I was pretty much on the go from 5 AM to 10 PM yesterday and didn't have enough energy left to even turn on the puter after I finally sat down last night.  LOL  CONGRATS on your final installment of Rituxan!  Is it still helping with your joints too?  And don't scold poor John too much.  With all he's been thru in the last year, he should be allowed a little slip of the memory.  Now if he forgets something really BIG  - like not showing up at the ship for a 2 week cruise with you....well then he's got a scolding coming fer sure! 

     

    Yes, Benda can screw with one's blood counts - especially the whites and reds.  But then so can CHOP or CVP or ESHAP - all of which I've had and survived -and I'm prepared.  Hoping for the best and planning for the worst. I've stepped up my own dietary standards (I had "standards" before???  lol)  in order to get my body ready as possible for the onslaught and will continue throughout. Including a higher than normal amounts of "alive" foods - fresh fruits/vegs, whole grains, good protein, much less processed foods (if I can't easily pronounce all the ingredients....do I really want to eat it?? LOL), very little "simple sugar" foods, and I'm taking a few specific supplements that seemed to help in keeping my counts viable before.  I'm also doing acupuncture 1-2 times pr week just for overall stress/pain reduction and to keep my internal energy channels open and flowing.   Extra sleep...not so much...can't seem to get my body to settle down earlier than 11 or midnight lately.  I ought to be a real hoot on steroids, huh???  LOL

     

    There's always potential for side effects with any/all chemo - if we really knew them all don't think many of us would have the guts to do it!  The "laundry list" can scare the bat snot outta ya!  LOL  But comparing Benda with the others I've done, there's consistency in the side effects.....think they are common in a lot of chemos.  As I heard once - it's a balancing act and an art - using enough chemo to kill the cancer without using so much of it you kill the patient.   I know what to watch for and when to become alarmed enough to call the doc immedidately.

     

    So we shall see - I remain forever determined.  Benda has just been approved in the last 2-3 years for treatment of indolent b-cell lymphomas but has been around for decades and was used a lot for CLL.  Shows a lot of promise for us lymphies who seem to resist the powers of rituxan.

     

     

    All is well

  • 12. Re: The journey continues - Part 7
    Jeri Registered Users
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    Sounds like you're all ready to go Sharon!  Guess you know all the ins and outs by now.


    Hugs, Jeri

  • 13. Re: The journey continues - Part 7
    Registered Users
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    Well here we go.....  confirmed to start Benda next Tuesday afternoon.  Each cycle is 2 consecutive days, (do them both in the PM so I can go home and crash out of need be to recoup for work the next morning) follwed by a Neulasta shot and repeat every 4 weeks for 6 cycles.

     

    Lymphoma - This time....THIS time.....you are being put on notice!!  You WILL go away and leave me alone for a good long time!!  See ya again in about 40 years!!  Ya hear me, lymphoma???  You better be listening!  You're about to get blown to smithereens!!!

     

     

    Sharon

     

    (oh yeah - hugs to all the rest of you....  lol)

  • 14. Re: The journey continues - Part 7
    CookieMonster Registered Users
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    Yeah, lymphoma!!!!!  Listen up, you leave my friend Sharon alone!!!  Sit up take notice, you're going bye, bye . . . Bwahahahahaha!!!  Die cancer cells die!!!

     

    Okay Sharon, I'm myself again!  LOL  May you find yourself with virtually no side effects from this next round.  You deserve a break for sure!!!!

     

    Hugs and blessings,

    Jane

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