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Hoss79's picture
Posts: 78
Joined: Nov 2017

So my Dr’s office just called to schedule my 6 month appointment/scans. My 3 month scans were NED. The bad thing is my Scan/appointment isn’t until the end of July. I was just starting to mentally feel better and then bam!!! This board has been a blessing to me. Even though I don’t post a lot I read most of the posts and it helps the healing process. Thanks to all who open up their life about this horrible disease.

APny's picture
Posts: 1998
Joined: Mar 2014

Totally understand. Scan times are always so stressful. Even after 4 years I still get anxious. Hopefully you'll be NED once again.

foroughsh's picture
Posts: 779
Joined: Oct 2014

Few days prior to next scan is disgusting but then the good news is there and you're going to celebrate the good news

BoondockSaint's picture
Posts: 242
Joined: Mar 2017

Totally understandabl. It’s pretty tough on us spouses as well. Well wishes to all.


donna_lee's picture
Posts: 999
Joined: Feb 2009

but never totally goes away.  I've been at this for 12 years and would estimate 3 dozen scans.  The worst part is knowing that I'll have pre and post hydration to assist the one kidney in getting rid of the dye.  And that extra 2 liters of saline solution plus the barium sulfate produces diarrhea before you leave the facility.  I come prepared with panti liners and diaper wipes.

So good luck on the next scan, and hope you have many more.

Hugs, donna_lee

JoeyZ's picture
Posts: 210
Joined: Mar 2018

Hang in there, you got this. You can do it for that little bundle of love and that sweet little smiling face!! He's adorable.

Steph85's picture
Posts: 166
Joined: Feb 2018

My first 6 month scan is June 4th  and I can't wait! I'm such a hypochondriac. ..  I've been having flank pain and mud back pain for a couple weeks and my urologist's PA doesn't seem concerned.   I'm sure its maybe from coughing...  I've been sick for over 2 weeks with allergies.. Or a cold.. Or both. Anyway, just need to hear NED and then maybe I can stop googling every symptom.  I know it doesn't help, but its almost an addiction. Since finding out I had cancer, I need to know everything about it and know what to look out for in case of recurrence.  What helps is having children to keep you busy haha.  Cheers to hoping we hear those magical words from uncle NED


MelBlessed's picture
Posts: 71
Joined: Aug 2017

Having my first CT scan next week. Have not been told about the hydrating or the bag of saline.  Please advise so I can be prepared. Thank you!!!!

Hoss79's picture
Posts: 78
Joined: Nov 2017

I had my first scan 3 months after my surgery. I had to drink 2 glasses of some orange flavored stuff then had to wait about an hour. I did some blood work before hand and they said if my gfr was above I think 40 then I would get an injection of stuff. I’m sorry I don’t remember all the medical terms. I got the injection and they said to drink plenty of water afterwards. I’m hoping someone with more experience on this will post.

JerzyGrrl's picture
Posts: 760
Joined: Jun 2016

I do have some info regarding the CT contrast solution that might help.

The IV saline bag is how the ICCM (contrast) gets in to your body. Even though it's often referred to as "dye," it's actually just stuff that's harder for the CT energy to get through. Your innards won't get tinted. As for the bag, they start the saline IV and then the contrast is put in with the IV, sort of slowly. You may get a warm flush and/or feel as though you have to pee when it's administered.

As long as you don't have something going on medically that's a reason for you to not drink water, it's a good idea to pre- and post-hydrate.  No need to get carried away, just drink a glass every hour or so (Your ability to do this, of course, depends upon how big your glass is) before. Then, when you're done with your CT scan, start drinking water on the hour until bedtime. Then, drink more water than usual the next day (again, no need to get carried away).

I've had LOTS of CT scans, but a delayed reaction to the contrast only ONCE (and it wasn't the first time or the last time I had the contrast -- go figure). I've decided I want to keep it that way. No. More. No. Way. No. How. Fortunately, I was able to take care of things at home -- didn't go to my primary care physician or the ER. I sure scared my dog half to death while I was busy being one sick puppy, though. It's funny now, but I still make sure there's a bucket handy and abundant toilet tissue in the bathrooms.

So, in addition to the water thing, a week before the scan I also stop taking NSAIDs (over the counter pain meds) and drinking anything with caffiene [Those two things came from a paper analyzing characteristics of people who reacted to the contrast; they were way down on the list, but I pretty much decided it couldn't hurt].

Generally, you sign a paper pre-CT that explains stuff they're going to be using and what you should be doing afterwards (the water thing) and what to watch for that could be a side-effect or reaction.  Be sure you get a copy of it to take home with you. It's a good reminder to drink water and in the very rare event that you do have to follow up with your physician due to a reaction, you'll have all the info.

All the best -- keep us posted!


todd121's picture
Posts: 1449
Joined: Dec 2012

I had been told by my nephrologist to stay away from NSAIDs period. But my kidney function isn't good enough to even have the contrast...She suggested only tylenol for pain relief.


MelBlessed's picture
Posts: 71
Joined: Aug 2017

For the information.   I had one ct 9 months ago when I was diagnosed, but it was a rushed one with no time to prep, no barium to drink!  I will definitely hydrate before and after for this one, especially with just one kidney.  Thank you for your help! Prayers for NED and for all!

todd121's picture
Posts: 1449
Joined: Dec 2012

It seems we all have different experiences. For me, my oncologist won't allow me to have contrast unless my creatinine is 1.4 or below. So far it's only happened 1-2 times in the past 20 or so scans and even then I refused the contrast. Since I don't get contrast, I don't worry particularly about hydration.

They do give me something to drink. I don't think it's barium. It's clear. It looks like water. I drink 1/2 liter 1 hour before and another 30 minutes before.

I haven't had CT contrast since before my kidney was removed 5 1/2 years ago. I did have the MRI contrast once (for a brain MRI) and I had a weird, allergic reaction to it. That was not given by IV, but was given by injection as I recall.

The CT scans without contrast is my main followup. I get a chest, abdomen and pelvic CT every 3 months. They also do blood work. My nephrectomy was 5 1/2 years ago. I had one met to my adrenal gland 3 years ago and had it removed. So far everything has been stable. I'm very grateful.


AnnissaP's picture
Posts: 632
Joined: Sep 2017

Hoping all the best for you!! Just enjoy your life and don't let the scans get in the way of that.

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