CSN Login
Members Online: 8

You are here

Good News to Share

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I got my scan results today and happy to report NED. It's been 14 months since my last tumor was discovered. I definitely felt relieved.

Today I asked my doctor if we could relax the scan schedule. I'm getting a chest/abdomen/pelvic CT every 3 months now. Have been since my last tumor 14 months ago. He said no. I asked him how long he wants me on this 3 months schedule, and he said indefinitely. He told me that he has seens mets as far as 5 years out and he wants to catch it early. He said the earlier we catch it the more options we have. Also, he thought at my age the risk from radiation exposure was not an issue. Well, of course I'm going to do what he says.

The only issue that is worrying me somewhat is my creatinine. For the past 3 years it's hovered around 1.6. However, the past 4 months it has been consistently 1.8. It was 1.8 again this time. I drank what I thought was plenty of water this time, but it didn't help. It makes me worried my kidney function is getting worse. Does anybody know how bad is 1.8?

I'm very grateful and glad to share good news with all of you. I wish you all the best and thank you for your friendship and support over these past 3 years.

Todd

 

 

APny's picture
APny
Posts: 1994
Joined: Mar 2014

I can't comment on the creatinine but so very happy to hear of the most recent Uncle Ned visit. I think you have a terrific, cautious doc who wants to keep a close eye on you. That's truly wonderful, though frequent scans are stressful.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Yay, Todd!!

Great news that Uncle Ned paid you a visit. It is great that the doctor is watching you closely. Not sure about the creatinine count, either though. I am sure that some knowledgeable members will chime in soon!

Cheers!!

Jojo

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hey Todd, glad its YOU and you are doing better!

It means a lot to hear good news and that you shared it with us!

Continued healing with hope!

Jan

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Todd,

It's always good to see NED report but yours is wonderful. I'm very happy for you, you deserve such wonderful news. I don't know about cratinine but it's good to talk with a nephrologist.

Forough

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

Happy to hear good ole Uncle Ned paid you visit Cool

 

Your creatinine maybe creeping up because of your age and the fact that you only have the one kidney… 1.8 is not super high, but I think it's something you may want to get on top of.  Do you have a nephrologist?  

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

So happy to hear that!  As far as the creatinine level, from what I've learned many things can affect the levels: from cancer to dehydration to certain medications to eating a lot of red meat within 24 hours of being tested.  As others have suggested, might want to see a nephrologist if you haven't already. 

Thank you for sharing the good news tho.....love reading that!!

Donna~

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I see a terrific nephrologist who is a researcher at a medical school near me. I see her every 3 months. I will talk to her about this creatinine "creep". She does a lot of blood tests when I see her, so I think she's on top of things. She does want me to lose weight. It might be my weight...

Todd

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

Great news Todd !  Wishing you continued good health. 

 

Jay 

Shecka1121
Posts: 114
Joined: Apr 2015

Todd, that is awesome. I know you go to an RCC specialist, correct and you are in California.  Can you share your dr name?

 

Many thanks

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I'm seeing Dr. Pal at City of Hope in Duarte, California.

He trained under Dr. Figlin, also a great RCC doc in Los Angeles. I've heard Dr. Figlin say that a typical oncologist sees 1-2 kidney cancer patients a year and he sees 30 a week. That's the difference between an RCC specialist and a typical oncologist. It gives me a great feeling knowing that at least I'm seeing docs really on top of what's going on with RCC research.

Todd

daisybud's picture
daisybud
Posts: 505
Joined: Jan 2016

Congratulations on NED!!! Very happy for you!

Allochka's picture
Allochka
Posts: 942
Joined: Nov 2014

Todd, congratulations on wonderful news! :-)

BDS's picture
BDS
Posts: 172
Joined: Aug 2012
angec's picture
angec
Posts: 924
Joined: Mar 2012

Great news, Todd! My mom's @2.4 kidney function. It was normal until she started taking three blood pressure meds due to Votrient.  The doc isn't worried. She said dialisys starts at 20. So yours is still ok. Don't worry too much.  Keep on with the NED!  

Ange

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

So happy to hear such good news Todd!  Clear your mind about the creatinine levels with your doc so you can really relax and enjoy Spring!

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Todd,

     Such great fantastic news!! Always so glad to see Uncle NED visiting!!

                                      Brenda

NanaLou
Posts: 71
Joined: Oct 2011

Always a Happy day to hear aobut NED. 

 

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

I am doing the happy dance over here in Austin for your good news. Keep on keeping on.

Nancy

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

Todd,   Thats great news on the NED.   I too was NED again in January.  Our tumors were near same size but I was Stage 1B with grade 3.  the first year I had 4 scans then I have had two since. But I did have some without contrast and my creatine which had hit a high of 1.8 is now back to 1.2 and GFR is 58.   I think the scans have little impact on kidney function unless its with contrast.   Best of luck getting the correct combination.

 

Jack

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Great news Jack! Loving the NED reports!

Hugs

Jojo

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Glad to hear your good news Jack!

Thanks everyone for the supportive posts. I really appreciate it. Somehow with this scan, I feel actually relieved. I hadn't with the last ones. I suppose because it's been a full year now since my last tumor was removed.

Wishing you all the very best.

Todd

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

got the formula. We need to be more like him.

 

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

Fox,   Lots of examples here of advocating for ones self, but as far as positive attitude you are the mark to strive for Fox!   Mind over matter.  Todd,  celebrate the NED.

Jack

FLOSSER
Posts: 17
Joined: Jul 2012

I check back here every so often to read how you are all doing- glad to read this good news Todd. This made my day. Keep on keeping on like the Fox!! SUZ

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Congratulations on the NED, Todd. I don't know anything about creatinine levels but understand your concern. I hope your research is positive! 

Ree_Maryland's picture
Ree_Maryland
Posts: 161
Joined: May 2014

Hi Todd, my creatinine Level is also 1.8, dr said cut back on red meat and proteins. and drink plenty of water .I am trying my best .

Subscribe to Comments for "Good News to Share"