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Shoopy
Posts: 210
Joined: Jul 2013

Hi folks. 

Last we talked I was talking Revlimid (an IMID--not chemo) to knock down the DLBCL before auto SCT.  I had my CT scan last Friday and PET scan today.  Met with the doctor and, unfortunately, the drug isn't doing what we hoped.  The cancer has progressed--the Revlimid might have slowed it down but that wasn't the goal.  This thing is too aggresive.  So, tomorrow, I will start a new chemo regimen.  We'll try this regimen for 7-8 weeks in hopes it knocks it down for the SCT.

Also, he's now talking about doing an allo SCT vs. an auto SCT.  We have enough of my own stem cells but he just feels that this thing is SO aggressive that an auto wouldn't give us the result we want.  Speaking of that result--"cured"--he also said the further we get down this road the more difficult that's going to be.

So...not great news but it is (and has been) in God's hands.  I'm going to do all I can do...keep on truckin!

Karl 

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

Karl,

  That is certainly the news we do not want to hear. At least there are so many other roads to take to find a way to beat this monster. We are here with you. John 

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Dear Karl, no that is not great news. And not what any of us, especially you and your family, wanted to hear. I hope the new chemo works the magic to get things in check for your SCT. Do you have a potential donor for transplant? 

Yes, we are all in God's hands every day. I will pray, hard, for you every day. And don't forget. . .you plan to live forever.

(((Hugs))) and Love,

Rocquie

 

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Sorry to hear this news.  Hang in there and pop a "wheely" as you keep on truckin'.  Please keep us updated and thanks for sharing with us.

Positive thougths and hugs headed your way,

Jim

illead's picture
illead
Posts: 485
Joined: Aug 2012

We are so sorry, boy it has been a rough week hasn't it? We know how you are feeling and your family too, we also are here for you. All any of us can do Karl is just keep fighting and we know that you will. I know you will gain comfort from this forum. We certainly have. please tell your wife that I know exactly how she feels, if she needs to talk she can come to the forum or write me personally.There are no magic words, just that we care so much.  Bill & Becky

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Karl,

 I'm glad they have another chemo lined up for you to try to knock this back. I find comfort knowing you still have options ahead of you, and there is always hope that more options develope along the way. You are in my prayers and while your doing this new chemo, don't hesitate to come here and share how your feeling. I check the group postings in the morning and always in the evening before shutting my computer down for the night. I'm a bit of a night owl, so if your having a bad night don't be surprised if I pop in if your needing someone to talk with. Laughing Hang in there and know you have all of our support. Best wishes...Sue

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1011
Joined: May 2012

With you in prayer, Karl.  You are one of those who has perservered in what the Army would call a "dirty fight."  

It seems researchers are always developing a new combination therapy in their 'alphabet soup.'  I hope this one gets you ready for SCT.

max

Shoopy
Posts: 210
Joined: Jul 2013

I truly apprecaite all the heart-felt wishes and prayers.  I love you guys!

This week has continued to be a challenge.  Tuesday night, after receiving the first two chemo drugs, I was at home and began my shortness of breath and rapid heartbeat became 'extreme' as well as a 102.5 temp.  Luckily, they had a bed for me at Roswell and the night folks brought me down heart down from 200/minute to something manageable (100/minute).  They will planning to drain some fluid from my pernneal (sp?) area on the left side on Wedneday PM but moved that up to the AM.  Ended up taking out 1.8 liters...almost enough to fill a 2 liter for diet coke!  Since your lung is like a nerf ball--takes time to reform--it took the rest of the day to spring back and I'm breathing easier now.  My heartbeat is still all over the place but they feel it will work itself out as I heal, break down the cancer, and get some exercise.  They are also planning to keep me here until Monday to make sure the rise in temp isn't hiding some underlying infection (ie: pumping me full of anti-biotics).

So...yes...this is a f'ing dirty fight.  I have come to realize that this isn't God's plan.  This is pure evil's plan.  I know God is there by my side.  Together...we'll fight and beat this thing.  I know it.

Thanks to all of you!

Karl

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Thanks for the update.  Dang, you've had a rough week!  Hopefully they will tweak things as you progress and you won't have the reactions you just had.  I know in my case they were pretty good about that - but I was in the hospital for my treatments.  I hope you get sprung soon - being in the hospital is not fun and I never really rested well when I was there (prednisone - grrrr).

We're by your side too, Karl.  Hang in there!

Jim

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Karl,

  Wow...rough week indeed! The one thing that was hardest on me during treatment was the way my heart and breathing reacted to the steroid in my chemo.CVP-R. Rapid heart beat and shortness of breath is so hard to deal with. I cried every night during the 5 day period the nasty prednisone was required. I'm so sorry you are going through this, but relieved you are in the hospital where they can keep a close eye on you. Hang in there friend and know we are here for you every step of the way. Keeping you in my prayers. Love...Sue

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

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Cancer sucks and I'm sorry that you and your family have to go through this!!!  I will pray that this new medicine works for you, sending you positive thoughts and prayers! Hope you start feeling a little better as your body gets accustomed to the new medicine. Take care

Sincerely,

Liz

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Hello Karl,

That must have been frightening with the heart, fever, and shortness of breath! I know being in the hospital is not the most fun in the world. When I was having those exact same troubles and kept having to go to the hospital, I at least felt safer and less afraid, knowing I was being watched over. I'm sure your nurses are just as sweet to you as mine were to me. Amazing people! 

The food was not flavorful but I've had worse (at my mother-in-law's table). I would ask for about 12 butters, several packs of S&P, lemon juice and what ever else I could get them to bring. Sometimes, I would order breakfast 3 times a day. They also made me lots of chocolate milkshakes. I could get cinnamon, brown sugar, and raisins to go with my oatmeal. 

My hospital also had Intergrative Medicine services and yours probably does too. If its not too "flaky" for you, you can have aromatherapy, reiki and healing touch. Maybe even pet therapy if you like dogs. I asked for the Chaplain daily. All these things really helped me.  (Sometimes my husband would just sit quietly in the corner and shake his head while the male nurse he called Dr. Bombay--from bewitched--would perform reiki on me). Makes me smile thinking about it.  

Oh yes, and the abbreviation in medical charts for shortness of breath is S.O.B.  As in "Patient is S.O.B." I know this from my days in medical billing. 

Love, hugs, and healing wishes to you. . .

Rocquie

 

illead's picture
illead
Posts: 485
Joined: Aug 2012

Hope it brightened your evening Karl.

Shoopy
Posts: 210
Joined: Jul 2013

Thank you to everyone!  The love from this board is freakin' amazing.  We do have some of the 'funky' treatments.  I tend to be more traditional although I have started to use a bit of visualization.  Anyway, the last day has been interesting because I was still battling tachycardia and now a-fib (what the heck?).  Last night around 4pm...little sleep...I asked for an activan.  I had the best 2.5 hours of sleep, woke with no tach and regular rythme!

Again...thanks you all.  Cancer is evil...and it can't win!

Karl

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

Karl,

  Hang in there. You will beat this. John

vinslymphoma
Posts: 15
Joined: Feb 2014

Sorry to hear about your latest reactions but i am sure this is the toughest fight ever and that you have overcome it means you are on your path to success..my prayers for your faster recovery and remission soon and into good healthy life all through sooon

all is well !!! 

-vinoth

MChantal's picture
MChantal
Posts: 94
Joined: Apr 2013

Hello Karl,

Well I really don't know what to say besides, cancer sucks! One thing though is you truly are a fighter, that is definite. I apologize that I have been MIA if you have had any questions. Reading on your latest updates and stories...I recall back to Kyle's first chemo session and us landing in the ER because his HR was 160-180 bpm. In Colorado as well during his BEAM treatment, he was sleeping and all of a sudden the nurses ran in because his HR again jumped up to 180 bpm and he is in SVT (supraventricular tachycardia) rhythm.  He was given adenosine to knock him back into normal sinus rhythm and not have to transfer him to the ICU. We have a Cardiologist and he has worn a 24 hours heart monitor and yet, nothing is abnormal (EKG, Echocardiogram, chest x-ray, etc: unremarkable). To this day, his HR is still at 110-115 and sometimes does jump up to 150-160 bpm. It is the most confusing thing! He says that he has this "different" cough and it's like after the cough does his heart rate jump up. However, now we can bring it back down without any medical interventions merely, deep breathing or valsalva maneuver (bearing down). I do too remember that he took Ativan and it helped a lot as well...

Cancer will NOT win Karl.

You are stronger than you ever could have imagined.

Love,

Michelle

Shoopy
Posts: 210
Joined: Jul 2013

Thanks for the note and honestly, after my transplant, I plan to take about a month off from this site.  Like MacAurthur, I shall return! 

That's interesting because the cardio doc said that I have SVT as well.  He said I have two nerves running to my heart (most have one) and that somehow the signals speed up and cause the quickened heartbeat.  Right now they have me on a daily medicine to keep it below 110.  It's weird because the cardio doc seems to thing I should have experienced this fast heart rate thing before...but nope.

It's refreshing to know that Kyle went through/going through a similar thing.  I'm sitting here thinking "heart rate up again...maybe new chemo isn't working".  So now I can relax and lower than anxiety a bit!

Karl

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