Good News to Share

todd121
todd121 Member Posts: 1,448

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

 

 

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Comments

  • APny
    APny Member Posts: 1,995 Member
    I can't comment on the

    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
    Jojo61 Member Posts: 1,309 Member
    Yay, Todd!!
    Great news that

    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
    Jan4you Member Posts: 1,330 Member
    Jojo61 said:

    Yay, Todd!!
    Great news that

    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

    Hey Todd, glad its YOU and

    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
    foroughsh Member Posts: 779
    Todd,
    It's always good to see

    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
    medic1971 Member Posts: 213 Member
    Great news

    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
    hardo718 Member Posts: 853
    medic1971 said:

    Great news

    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?  

    GREAT news!!

    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~

  • rja3d
    rja3d Member Posts: 35
    Great news Todd !  Wishing

    Great news Todd !  Wishing you continued good health. 

     

    Jay 

  • Shecka1121
    Shecka1121 Member Posts: 116 Member
    rja3d said:

    Great news Todd !  Wishing

    Great news Todd !  Wishing you continued good health. 

     

    Jay 

    Todd, that is awesome. I know

    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
    todd121 Member Posts: 1,448

    Todd, that is awesome. I know

    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

    RCC Doctor

    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

  • todd121
    todd121 Member Posts: 1,448
    medic1971 said:

    Great news

    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?  

    Thanks. Nephrologist.

    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

  • daisybud
    daisybud Member Posts: 529 Member
    todd121 said:

    RCC Doctor

    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

    Congratulations on NED!!!

    Congratulations on NED!!! Very happy for you!

  • Allochka
    Allochka Member Posts: 993 Member
    daisybud said:

    Congratulations on NED!!!

    Congratulations on NED!!! Very happy for you!

    Todd, congratulations on

    Todd, congratulations on wonderful news! :-)

  • BDS
    BDS Member Posts: 172
  • angec
    angec Member Posts: 924
    Great news, Todd! My mom's

    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
    marosa Member Posts: 333
    angec said:

    Great news, Todd! My mom's

    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

    Great News Todd!

    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
    danbren2 Member Posts: 311
    marosa said:

    Great News Todd!

    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!

    Hooray, Hooray!

    Todd,

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

                                          Brenda

  • NanaLou
    NanaLou Member Posts: 71
    danbren2 said:

    Hooray, Hooray!

    Todd,

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

                                          Brenda

    Congrats on NED!

    Always a Happy day to hear aobut NED. 

     

  • nancybuck
    nancybuck Member Posts: 117
    Great News

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

    Nancy

  • Skagway Jack
    Skagway Jack Member Posts: 224
    Great News!

    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
    Jojo61 Member Posts: 1,309 Member

    Great News!

    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

    Great news Jack! Loving the

    Great news Jack! Loving the NED reports!

    Hugs

    Jojo