Shoopy Latest

Shoopy
Shoopy Member Posts: 210
in Lymphoma (Hodgkin and Non-Hodgkin) #1

It's been a while since I've given everyone an update on my situation.  For the newbies...a short recap:  Dx as Diffused Large B-Cell Lymphoma (Activated B-Cell) in May 2013.  After 2 cycles of R-CHOP, it was determined that I was refractory.  My cancer is not only extremely aggressive but also chemo resistent.  I then went through 3 cycles of R-DHAC, 2 cycles of R-ICE.  We tried collecting stem cells for an auto transplant twice through aphersis.  Ended up collecting bone marrow the old fashion way--harvest.  I thought I was ready for the transplant just before Christmas but my cancer activity started to increase.  I started Revlimid which worked the first cycle but not the second.  Tried one cycle of R-GemOxy which didn't do a thing.  Needless to say...I was getting...concerned (what an understatement).

We looked at different clinical trials and even CART-19 but my cancer comes roaring back after 3 weeks without chemo.  Four weeks ago the doctor recommended EPOCH-R with Velcade.  EPOCH-R is relatively similar to R-CHOP so we weren't too hopeful...however the addition of Velcade was new.  Velcade isn't a chemo drug...its a drug (in layman's terms) that targets the protein on cancer cells that makes them resistant to chemo.  Studies have shown it effective against my DLBCL ABC.  They give Velcade on day one of treatment so the chemo can start on day two.

When I started this new regimen, my LDH was over 9000.  The normal range used at Roswell for LDH is 300-650.  They are giving me chemo every two weeks.  Now, after two cycles (and two rest weeks), my LDH is below 900!  I had a CT scan two days ago and the nurse read the report...basically all nodes show 'significant reduction'.  I have a PET scan this afternoon and my doctor will have the results immediately.  I'm expecting good news there too!

I think I'm FINALLY going to make it to transplant--which will now be an allo (donor) transplant.  Luckily, my brother is a 6 of 6 match.  They are targeting it for end of April. 

This has been such a roller coaster ride I almost hate to put all this in writing...worried that I'll jynx myself!

My plan is to live forever! So far; so good!

Karl

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
    Latest

    Wow, when you put it like that, it is easy to see just what you have been through. Karl, my friend, you are one tough and brave man! I am so proud of your determination.

    It really does sound like you are getting there. There being your transplant. I don't know how the allo transplant is done. Will your brother get his stem cells harvested ahead of time? Will he be in the hospital the same time as you? How wonderful that he is such a perfect match. 

    Great news with the LDH readings; that is pretty amazing. Thank you so much for the update. You, your family, and your medical team will continue to be in my prayers.

    Here's to living forever!

    Hugs,

    Rocquie

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Shoop !

    Shoop,

    Thanks for some great news to help get me through work this weekend.

    LDH was the one lab result that exactly paralled my tumor size and path to remission, so I know that your 90% decrease (9,000-to-900) is fantastic.

    My doc did my first CT to monitor chemo effectiveness after my third infusion.  He pulled up the images during my office visit and said, "They teach in oncology training that turmor reduction needs to be 'visible from across the room,' and yours is -- you can see the shrinkage from 'across the room.'

    It sounds like that was exactly what the nurse was reporting to you from the written radiologist's report: "SIGNIFICANT reduction."

    Visible from across the room !

     

    max

    .

  • jimwins
    jimwins Member Posts: 2,107
    #4
    Good News

    Karl, thanks for the good news!  It's about dang time :).  Keep us updated.

    Hangin there!

    Jim

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    It's looking good!

    Well...it sounds like you are finally making some good progress! "Yeah"! I'm so happy for you! You amaze me and your strong "go for it" attitude is just great! You've been traveling a long hard road, but I am confident the journey is going to pay off and things are going to turn in your favor for the good. Keeping you in my prayers with only positive thoughts flowing your way. Keep us up-dated! Take care my friend. Love...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

  • illead
    illead Member Posts: 884 Member
    #6
    allmost60 said:

    It's looking good!

    Well...it sounds like you are finally making some good progress! "Yeah"! I'm so happy for you! You amaze me and your strong "go for it" attitude is just great! You've been traveling a long hard road, but I am confident the journey is going to pay off and things are going to turn in your favor for the good. Keeping you in my prayers with only positive thoughts flowing your way. Keep us up-dated! Take care my friend. Love...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

    Hi Karl

    I agree with the others, your post really put into perspective what you have been through and it's about dang time.  You never complained but we were all worried.  Now we can breathe a little better.  Many many congrats, we know it is well deserved and we are all so happy for you.

    Our best to you and your family and please give a big thank you to your dear brother, Bill & Becky

  • Shoopy
    Shoopy Member Posts: 210
    #7
    Day off

    Thank you all for all your encouragement, prayers, and just plain unconditional love.  Today my LDH hit a new low (833) and I will start my 3rd round of chemo. 

    Also, the doctor managed to pull off a day pass for me yesterday.  I was allowed to leave the hospital and go home for 6 hours.  It was heaven.  I slept in my own bed for 2 solid hours and watched a movie with my wife and kids. 

    So...back to the stuff.

    Karl

  • jimwins
    jimwins Member Posts: 2,107
    #8
    Shoopy said:

    Day off

    Thank you all for all your encouragement, prayers, and just plain unconditional love.  Today my LDH hit a new low (833) and I will start my 3rd round of chemo. 

    Also, the doctor managed to pull off a day pass for me yesterday.  I was allowed to leave the hospital and go home for 6 hours.  It was heaven.  I slept in my own bed for 2 solid hours and watched a movie with my wife and kids. 

    So...back to the stuff.

    Karl

    Good news

    Hey Karl.  I'm glad you got a little taste of home and family and hopefully got a "recharge" from that :).  Thanks for sharing- it's always great to hear good news here!

    Maybe those aliens at Area 51 aren't so bad after all ;).

    Jim

  • anliperez915
    anliperez915 Member Posts: 770
    #9
    Shoopy said:

    Day off

    Thank you all for all your encouragement, prayers, and just plain unconditional love.  Today my LDH hit a new low (833) and I will start my 3rd round of chemo. 

    Also, the doctor managed to pull off a day pass for me yesterday.  I was allowed to leave the hospital and go home for 6 hours.  It was heaven.  I slept in my own bed for 2 solid hours and watched a movie with my wife and kids. 

    So...back to the stuff.

    Karl

    Wow Karl! Your attitude

    Wow Karl! Your attitude towards everything you have been through really amazes me! It's really something to be admired. I don't think I would have been as brave and positive as you and I'm really happy for you that finally something is working! Hopefully and I will keep you in my prayers that this regimen will do the job for you! Please take care of yourself and sending you a HUGE HUG!!! 

    Sincerely,

    Liz

  • Shoopy
    Shoopy Member Posts: 210
    #10
    April 12

    Celebrated my 49th birthday yesterday here at Area 51 (Roswell).  The nurses decorated my room while I attended a 2hr oreintation on allo transplant.  I didn't really learn anything...I just think they wanted me out of the room!  I had my wife and children with me last night.  Pizza from my favorite pizza joint.  A game of Scrabble (which I won!).  Chocolate cake (which my glucose is paying this morning when combined with teriods). 

    And this morning I get a late birthday present: No transfusions for the first time in 2-3 weeks.  My LDH dropped to 756 which is the first time below 800 in...months.  And, it is the last day of chemo for this cycle so I get some freedom from the 'old pole'.  Oh yeah...and they are giving me another 6 hour pass to go home tomorrow.

    My plan is to live forever!  So far; so good!

    Karl

  • jimwins
    jimwins Member Posts: 2,107
    #11
    Shoopy said:

    April 12

    Celebrated my 49th birthday yesterday here at Area 51 (Roswell).  The nurses decorated my room while I attended a 2hr oreintation on allo transplant.  I didn't really learn anything...I just think they wanted me out of the room!  I had my wife and children with me last night.  Pizza from my favorite pizza joint.  A game of Scrabble (which I won!).  Chocolate cake (which my glucose is paying this morning when combined with teriods). 

    And this morning I get a late birthday present: No transfusions for the first time in 2-3 weeks.  My LDH dropped to 756 which is the first time below 800 in...months.  And, it is the last day of chemo for this cycle so I get some freedom from the 'old pole'.  Oh yeah...and they are giving me another 6 hour pass to go home tomorrow.

    My plan is to live forever!  So far; so good!

    Karl

    Awesome Karl

    Happy Birthday young man!  49 is a mere blink of the eye on the way to forever :).

    Such good and positive news! Enjoy you six hour break from "Land of the Aliens".

    Thanks for making my day, buddy.

    Warm hugs to you and your family,

    Jim

     

     

     

  • onlytoday
    onlytoday Member Posts: 609 Member
    #12
    Great news!

    Karl.

    So happy that the new "stuff" is finally working for you!  And great news about your sibling being a match!  How cool is that?  Wow, you've really been thru it!!  Thank you for taking the time to write and give us your story and update.  Will pray for you and will look forward to more updates at you go forward.

    You are STRONG!!

    Hugs,

    Donna

  • Rocquie
    Rocquie Member Posts: 869 Member
    #13
    Shoopy said:

    April 12

    Celebrated my 49th birthday yesterday here at Area 51 (Roswell).  The nurses decorated my room while I attended a 2hr oreintation on allo transplant.  I didn't really learn anything...I just think they wanted me out of the room!  I had my wife and children with me last night.  Pizza from my favorite pizza joint.  A game of Scrabble (which I won!).  Chocolate cake (which my glucose is paying this morning when combined with teriods). 

    And this morning I get a late birthday present: No transfusions for the first time in 2-3 weeks.  My LDH dropped to 756 which is the first time below 800 in...months.  And, it is the last day of chemo for this cycle so I get some freedom from the 'old pole'.  Oh yeah...and they are giving me another 6 hour pass to go home tomorrow.

    My plan is to live forever!  So far; so good!

    Karl

    Happy Birthday!

    Enjoy time with your family.

    Hugs,

    Rocquie

     

  • illead
    illead Member Posts: 884 Member
    #14
    onlytoday said:

    Great news!

    Karl.

    So happy that the new "stuff" is finally working for you!  And great news about your sibling being a match!  How cool is that?  Wow, you've really been thru it!!  Thank you for taking the time to write and give us your story and update.  Will pray for you and will look forward to more updates at you go forward.

    You are STRONG!!

    Hugs,

    Donna

    Great news

    We are so happy to hear all the positive things, Have a great day off!

    B&B

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #15
    Shoopy said:

    April 12

    Celebrated my 49th birthday yesterday here at Area 51 (Roswell).  The nurses decorated my room while I attended a 2hr oreintation on allo transplant.  I didn't really learn anything...I just think they wanted me out of the room!  I had my wife and children with me last night.  Pizza from my favorite pizza joint.  A game of Scrabble (which I won!).  Chocolate cake (which my glucose is paying this morning when combined with teriods). 

    And this morning I get a late birthday present: No transfusions for the first time in 2-3 weeks.  My LDH dropped to 756 which is the first time below 800 in...months.  And, it is the last day of chemo for this cycle so I get some freedom from the 'old pole'.  Oh yeah...and they are giving me another 6 hour pass to go home tomorrow.

    My plan is to live forever!  So far; so good!

    Karl

    "Happy Birthday"!!!

    Hi Karl,

      Gosh...so much good news Smile..I'm so very happy for you! You enjoy the next few days at home and soak in all the love and fun you will receive from your family! Sounds like you have a really sweet caring staff at Area 51...that sure makes things a lot easier when dealing with so much. Take care my friend and keep us updated! Love...Sue

    FNHL-stg3-grd2-typA-Dx-6/10-age 63)

  • MChantal
    MChantal Member Posts: 107
    #16
    Shoopy said:

    April 12

    Celebrated my 49th birthday yesterday here at Area 51 (Roswell).  The nurses decorated my room while I attended a 2hr oreintation on allo transplant.  I didn't really learn anything...I just think they wanted me out of the room!  I had my wife and children with me last night.  Pizza from my favorite pizza joint.  A game of Scrabble (which I won!).  Chocolate cake (which my glucose is paying this morning when combined with teriods). 

    And this morning I get a late birthday present: No transfusions for the first time in 2-3 weeks.  My LDH dropped to 756 which is the first time below 800 in...months.  And, it is the last day of chemo for this cycle so I get some freedom from the 'old pole'.  Oh yeah...and they are giving me another 6 hour pass to go home tomorrow.

    My plan is to live forever!  So far; so good!

    Karl

    So happy!

    Hi Karl,

    As I read your latest posts, I truly was filled with the chills. I am so happy for you that things are looking good with this regime. Smile

    Keep it up! Before you know it, the allo SCT will be here. It will.

     

    Best,

    Michelle

     

     

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