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The New Treatment

Shoopy
Posts: 210
Joined: Jul 2013

I figured I'd let you guys know that I was released from Area 51 (Roswell Park) last Monday.  I'm still experiencing mild shortness of breath and fatigue but I guess that's expected after tha rough 3 weeks I've had.  I figured I'd mention that the new chemo I'm on is R-GemOx (Rituxin, Gemcitabine, and Oxalplatin).  I received all three drugs the first two days, take a week off, then receive just the Gemcitabin and Oxalplatin (this coming Monday and Tuesday).  Doctor considers that one cycle.  He's planning to do 2 cycles then rePET/CT (toward end of March).  That will tell us if I'm ready for allo transplant.

My 3 older brothers are being tested as possible donors but the BMT team seems to feel then have a 'pool' of 10/10 matches if they aren't suitable.  So...as always...the trick is beating this ***** down enough to be ready for transplant.

My doctors continue to be amazed that my body has taken the beating it has.  I've been through R-CHOP (2 cycles), R-DHAC (3 cycles), R-ICE (2 cycles), two attempts at stem cell collection, one stem cell harvest, Revlimid, and now R-GemOx. 

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

Karl

illead's picture
illead
Posts: 553
Joined: Aug 2012

......hanging in there!  I can't believe you have been through so much.  We plan on living forever also. Keep your positiveness and so will we!

Thinking of you always and praying for your docs, B&B

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Hi Karl,

  All I can say is "WOW"!!! From now on when I start to feel sorry for myself I will remember everything you have gone through,and still going through! You are amazing my friend! Nothing but positive thoughts and heartfelt prayers coming your way. Thanks for sharing. 

Bless you...Sue  (FNHL-stg3-grd2-typA-age 63)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1182
Joined: May 2012

Hang on Shoop !  You continue to amaze. Glad to hear that yet another drug combo is availavble to you, and it sounds like securing a donor will not be a problem .

Bless you, and you know you are in the thoughts and prayers of everyone here. Definitely mine.

max

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

Just wanted to say you seem to be kicking a** and taking names and that's awesome. I'm not sure I want to live forever just as long as it takes to do everything five or six times. As long as I get to do Things like be king of the moon, ride a flying pig, learn to speak goat. 

Best of luck

jonathan

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

I don't think "Goat" is available on Google Translate but become a politician and you should be well on your way to learning that language ;).

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Pretty soon they'll just draw your blood and use that as a new chemo regimen and call it "R-SHOOP".  Some of the side effects will be tenacity, winning attitude, positive outlook and never having to shave again! Wink.

Thanks for sharing and hang in there, buddy!

Jim

 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Karl,

  Looks like you are well on your way. You have been thru a lot and you will get thru this. I guess you and I and few others will be the only ones left living forever. John

Shoopy
Posts: 210
Joined: Jul 2013

I greatly appreciate all the love and support I receive from all of you.

I find it funny (maybe not the right word)...but I also think most of you can identify with this next thought.  It seems like each of us (patient and caregiver) become elevated to superhero status once people find out we have cancer.  Granted, it's a tough fight but honestly I don't feel special.  I'm a guy that has been diagnosed with DLBCL and am going through what I have to go through to get cured (because I don't like the alternative...lol).  I don't know...maybe it's just the humble PA dutch coming out in me.

Karl

illead's picture
illead
Posts: 553
Joined: Aug 2012

Maybe the German in me and Heinz 57 in Bill makes us close to PA Dutch. Undecided  I think most if not all of us are not "look at me people"  It's probably why we are such a great group, and of course very Cool.  Becky

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Karl, you are special and a SURVIVOR.  Pat yourself on the back and do something nice for yourself if you can.  None of us here is a super hero but John has a cool name for it. "Flagged faster than a speeding bullet, more powerful than a locomotive, ... look up in the air - it's COBRA MAN".  I'm not sure what color his cape and tights are - everything was in black and white when he first got them ;).  

Hope this made you smile.

Jim

 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I don't know about the rest of our group, but it sure put a smile on my face Laughing...John

Shoopy
Posts: 210
Joined: Jul 2013

Now that was pretty funny!  But shouldn't you look in the grass or ground if he's Cobra Man?

Remember...never wear a cape...it gets sucked into jet engines!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I don't usually wear a cape, but when I do it's no problem. I am so fast I can turn out the light and be in the bed and under the covers before it even gets dark.

Rocquie's picture
Rocquie
Posts: 508
Joined: Mar 2013

Dearest Karl, it is very obvious that you care so much about life and those who love you that you are willing to do whatever it takes to be done with this lymphoma business, once and for all. 

I do understand what you mean about hero status but when all this is done, I think you will look back and see things differently. When we are in the midst of it, we don't have much choice really, do we? When people told me they were proud of me (even my Doctor) I felt very humble, like you do.

Finally, I am beginning to feel a little different. One of my favorite quotes now is: "After a while I looked in the mirror and realized. . .Wow, after all those hurts, scars, and bruises, after all those trials, I really made it through. I did it. I survived that which was supposed to kill me. So I straightened my crown. . .and walked away like a boss." 

I can't wait to see you walk away like a boss hero. . .to live forever.

I'm still praying for you and your family!

Hugs,

Rocquie

 

 

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Karl,

I love your attitude....you have been through so much and continue to be humble..You are a superhero, you are fighting back against this son of *&%$# disease...I have no idea how you find the strength, but to be honest, I don't know how anyone does. It is just that we refuse to give up and continue to battle and that is charcteristic of a superhero, Cancer is not for the weak!!!

I want to reassure you that the elevated heart rate is probably from chemo that you have received previously, I has to work in the ER the other day for school and we saw 28 patients in a 6 hour period. I cannot lie about 80% of the patients had or have had cancer and there were many that have elevated heart rates from the chemo, I don't know about you but I will take a racing heart over a non-beating one anyday...lol...Unfortunately you have to make trade offs sometimes when it comes to medicine, as long as you keep on top of it and it can be taken care of with medication you will be ok.

REST UP BUDDY

XXXOOO

Carie

Chris17's picture
Chris17
Posts: 119
Joined: Oct 2010

You just gave me new hope as i read the hell you have been thru, i just posted my PET results and my journey is nothing in comparison as to what you have endured,my hat is off to you sir, you have renewed my hope to keep on the battle, i will defeat this demon.

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