4 Years In Remission from Stage IV Non-Hodgkins DLBCL and Scared for the First Time.

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Comments

  • OO7
    OO7 Member Posts: 281

    Sailor talk

     

    P,

    Let us hope and pray that whatever strain you now have (it may have morphed into a different form of lymphoma) it is readily treatable and returnable to complete remission.  Be aware also that SCT is not the only form of second-line treatment for many types of NHL.  I am unaware of the particulars of your type regarding second-line conventions.  LOTS of patients here are on single- or multi-drug maintenance therapies that seem to approximate full wellness for their particular disease status.

    I would like to add that you should be proud and thankful that you went with your instincts.  They were exactly correct.  You are proof as to why smart people seem to live longer !  You will navigate the choices that open up before you very successfully and well.

    max 

    Sailor talk

    Mr. Max,

    As a submarine sailor you set a gold standard, my lanuage is filled with venom and grit and not a worthy comparison.  That's a compliment.  My father-in-law was in the Navy, he  fought in WW2 in battle so nasty that never spoke of it.  One of the finest men I have ever met.  No wonder I married his son.

    P.

    What a week, deep down did you know?  I ask because at first read I guessed/feared you did.  I hate all of this.  Everything that each one of us endured.  Like all of us, we're so busy, I wanted to say more but the lack of time, commitments and perhaps being a bit stunned prevented me.

    I don't know how you feel, how could I.  One year out of the gate, living a sassy life but think of this everyday.  I admire your positivity, I have it too but fear my reservoir of strength will run dry.  The hell with that, put your amour on and fight like H E double hockey sticks!  Trying to clean up the rancid words I never knew existed before from my crazy mind..... 

    Be good to yourself!

     

  • OO7
    OO7 Member Posts: 281
    lindary said:

    good luck

    I hope they find that this reoccurrance is treatable and goes back into remission. I also like your use of such technical terms (peepee caca). Makes me feel like I am talking with family.  :-)  

     

    Wow

    what a nice thing to say Linda.....

  • lindary
    lindary Member Posts: 711 Member
    OO7 said:

    Wow

    what a nice thing to say Linda.....

    technical terms

    My parents seldom used swear words and when they did it was **** or damn, usually my mom. As my kids were growing up I ended to use those same 2 words but also terms like horse-pucky. It gets even weirder when with are with my brother & his family. Someone will drop and f*bomb, get scolded for it (they are all adults) and then the silly words start coming out. pee-pee-caca is one of them. Laughing

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,730 Member
    OO7 said:

    Sailor talk

    Mr. Max,

    As a submarine sailor you set a gold standard, my lanuage is filled with venom and grit and not a worthy comparison.  That's a compliment.  My father-in-law was in the Navy, he  fought in WW2 in battle so nasty that never spoke of it.  One of the finest men I have ever met.  No wonder I married his son.

    P.

    What a week, deep down did you know?  I ask because at first read I guessed/feared you did.  I hate all of this.  Everything that each one of us endured.  Like all of us, we're so busy, I wanted to say more but the lack of time, commitments and perhaps being a bit stunned prevented me.

    I don't know how you feel, how could I.  One year out of the gate, living a sassy life but think of this everyday.  I admire your positivity, I have it too but fear my reservoir of strength will run dry.  The hell with that, put your amour on and fight like H E double hockey sticks!  Trying to clean up the rancid words I never knew existed before from my crazy mind..... 

    Be good to yourself!

     

    Gutter

    007,

    After being in the sub service a few years, I rewatched Animal House with some friends one night.

    After about an hour into the movie, I asked them, "When does the gross stuff start ?"  Everything in Animal House was like a church service, compared to sub life.  

    We had an initiation one day. The corpsman was required to be there.... to prevent death.  Watch the German WW II movie Das Boot ("The Boat").   If conveys some idea....

    .

  • paella
    paella Member Posts: 81
    lindary said:

    technical terms

    My parents seldom used swear words and when they did it was **** or damn, usually my mom. As my kids were growing up I ended to use those same 2 words but also terms like horse-pucky. It gets even weirder when with are with my brother & his family. Someone will drop and f*bomb, get scolded for it (they are all adults) and then the silly words start coming out. pee-pee-caca is one of them. Laughing

    Update from Paella (and hello to all)

     So, the NOT KNOWING was the really hard part.   

    And from first being “scared” about recurrence (written 1/10/16) to finally knowing what’s what has been only 30 days….and I’ll have my first chemo in 2 days.  30 days from being scared for the first time to beginning the next round of battle.   

    Briefly, both the B-cell and the follicular are back but in a low grade form.  Still feel really good and strong – walking a mile sometimes 2 every day.  Game plan:  2-consecutive days of chemo (out-patient) consisting of Rituximab and Bendamustine. This will be a once-a-month event for 2 or 3 or 4 or 5 or maybe 6 months.  Every 2 months they’ll do a petscan to see if the cancer has been knocked back into remission and as soon as it is, they’ll start the autologous stem cell transplant business.  I know that involves some real whack-a-mole chemo then 30 days in the hospital.  

    I may have gotten this all the way correct or just a little bit correct…my notes are atrocious.   

    Did I mention the tough part was not knowing?  Or, more accurately, knowing that something was amiss but not knowing how OK or bad things were.  And the really really really tough part was forcing myself to ignore the logical, cogent, rational and well-reasoned arguments made by the bad wolf.  I have to admit I tossed him a bone or two but tried super hard to keep the best food for the good wolf.  Still not always easy.   

    Thanks for all your thoughts and input.  Does anybody know anything about the Bendamustine and Rituximab?  Apparently (and of absolutely ZERO importance to me) is that I won’t lose my hair.  I had a pretty easy time of it with the R-Epoch for the 5 months I was on it starting late 2011 and became the Imelda Marcos of Beanies.  Can I be brave and not bald?  Hmmm.  Letcha’ know. 

    Also any feedback about autologous stem cell transplants and what to expect would be appreciated.  Maybe I should start a new subject? 

     Best - Paella

  • lindary
    lindary Member Posts: 711 Member
    paella said:

    Update from Paella (and hello to all)

     So, the NOT KNOWING was the really hard part.   

    And from first being “scared” about recurrence (written 1/10/16) to finally knowing what’s what has been only 30 days….and I’ll have my first chemo in 2 days.  30 days from being scared for the first time to beginning the next round of battle.   

    Briefly, both the B-cell and the follicular are back but in a low grade form.  Still feel really good and strong – walking a mile sometimes 2 every day.  Game plan:  2-consecutive days of chemo (out-patient) consisting of Rituximab and Bendamustine. This will be a once-a-month event for 2 or 3 or 4 or 5 or maybe 6 months.  Every 2 months they’ll do a petscan to see if the cancer has been knocked back into remission and as soon as it is, they’ll start the autologous stem cell transplant business.  I know that involves some real whack-a-mole chemo then 30 days in the hospital.  

    I may have gotten this all the way correct or just a little bit correct…my notes are atrocious.   

    Did I mention the tough part was not knowing?  Or, more accurately, knowing that something was amiss but not knowing how OK or bad things were.  And the really really really tough part was forcing myself to ignore the logical, cogent, rational and well-reasoned arguments made by the bad wolf.  I have to admit I tossed him a bone or two but tried super hard to keep the best food for the good wolf.  Still not always easy.   

    Thanks for all your thoughts and input.  Does anybody know anything about the Bendamustine and Rituximab?  Apparently (and of absolutely ZERO importance to me) is that I won’t lose my hair.  I had a pretty easy time of it with the R-Epoch for the 5 months I was on it starting late 2011 and became the Imelda Marcos of Beanies.  Can I be brave and not bald?  Hmmm.  Letcha’ know. 

    Also any feedback about autologous stem cell transplants and what to expect would be appreciated.  Maybe I should start a new subject? 

     Best - Paella

    Stem Cell

    I see my Stem Cell dr to find out what the plans are now for me. I'll let you know. 

  • paella
    paella Member Posts: 81
    lindary said:

    Stem Cell

    I see my Stem Cell dr to find out what the plans are now for me. I'll let you know. 

    Will be thinking of you, Lindary!

    Thanks for staying in touch!...When do you see your doc and is he/she specifically a "stem cell" doc?  Where are you located (roughly) and what hospitcal/clinic do you call your own?

    Best - Paella

     

     

  • lindary
    lindary Member Posts: 711 Member
    paella said:

    Will be thinking of you, Lindary!

    Thanks for staying in touch!...When do you see your doc and is he/she specifically a "stem cell" doc?  Where are you located (roughly) and what hospitcal/clinic do you call your own?

    Best - Paella

     

     

    Stem Cell

    This is a Stem Cell Dr. She is part of the hemotology/oncology team at Rush Hospital in Chgo. My local hospital is part of the Amita group but my oncologist if with the Northwest Oncology group that is with a number of hospitals in the area. She orignally worked at Rush but moved to the suburbs because of travel times.