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GFR Question for you guys

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I had my surgery on October 5, 2012.  11CM T3A Grade 3.  I know I am at high risk of reoccurence but so far my scans have been clear. When I had my last scan a few weeks ago it was noted my GFR has declined to 55.  I don't have a baseline because all my previous bloodwork just notes ">60". My creatinine is also a bit evalated at 1.38.  I can't seem to get a straight answer from my doctors some of who note I have tage 3 CKD and others say I am doing fine with one kidney. I also note I treated for hypertension and midly diabetic with an A1C of 6.1.  Any comments would be really appreciated.

 

Don

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

I will gladly chime in here.. Yes you have reduced Kidney function.. as expected..   55 is not bad, not bad at all.. same with the 1.38 Creatnine number.  No not perfect, but you are no longer "whole"..  My GFR has been between 41 and 48 for the last almost two years.  Two weeks ago I tanked to 36.. booo...   My Creatnine varies from 1.6 to 1.9 post surgery. I am not allowed any Contrast with my scans with such low numbers..   But this is OK.. I think too many worry  about the lack of contrast..  Since I always get scanned at the same place, they KNOW what to look for..  and trust me they found the little buggers before they were 100% sure they were Mets.

OK so you want to know the rest of the GFR stuff...  basically watch it... if it drops a little bit still no worry.. sound the alarm if it gets in to the 30's. Should it get to the low 20's then worry..!  Around / below 20 and most likely you get to find out what Dialysis is all about.  That said, I doubt you will have any issues.  I happen to have two cysts in my remaining Kidney and I suspect one or both may be growing.. either that or..??

Now, I am sure you know that WATER is your best pal...  SALT and SUGAR are the enemy...  Foods that make your Kidney work hard need to be monitored / reduced.  I had a great session with a Dietician... she basically told me..  more Water, watch the red meat.   

Also, look at your entire blood test results... look for any high or low numbers...  You may need to limit one type of food and increase another...  I suggest you trend your blood tests from as far back as you can.  This will help with you watching things in case something changes.  Do NOT just rely on your Doctor doing it for you...  Mine missed the 10 point drop in GFR... booo...  Glad I found it..!

Hang in there..!

Ron

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

Actually, GSRON eased some of my fears.  I am unable to have contrast...my GFR is usually 36-40 range.  I have worried that any mets would not be picked up without the use of contrast.  Especially any bone mets, as I have back pain that is not helped by muscle relaxers.  But I just had a CT 3 months ago and it was clear.  After reading your post, I feel better that it would likely be seen.

CR

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

Hi CR.

Have you undergone a full-body nuclear bone scan?  This is not the same as a CT or MRI. It is the best way to make sure that you do not have any bone mets anywhere in your body.

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

No, I haven't with the kidney cancer.  I did with the breast cancer, but that was over 5 years ago, and a PET scan 4 years ago.  I see my doctor on Monday, after my chest x-ray, and I plan on bringing it up to him.  I was just trying to ease my mind until then.  Do they still use the contrast with the bone scan, regardless of numbers?  I'm guessing yes?

Thanks!

CR

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

It's a different kind of contrast than that given during a CT scan. It is radioactive.  I am not sure if one's creatinine level is factored in as potentially disqualifying for use of this or not.

It takes about 3 hours after the shot of this contrast is given before the stuff penitrates into the skeleton.  That is when you undergo the actual scan. 

todd121
Posts: 568
Joined: Dec 2012

Your creatinine is not an issue with the nuclear bone scan. The injection is not a contrast at all, it's a radio-isotype attached to a sugar molecule (I believe). This is a passive scan and not an active/radioactive scan, meaning they don't shoot a radioactive beam through you. The scanner is looking for where/how quickly the sugar is metabolized by passively sensing where/how much of the sugar is left by passively measuring the radiation level of this particular isotype throughout your body. (I'm probably messing part of this explanation up, but hopefully the important bits are accurate!)

My creatinine is too high for me to get CT contrast (1.6-1.7 range), but I was able to get this injection without a problem. I was told this is not damaging to the kidneys.

Todd

 

todd121
Posts: 568
Joined: Dec 2012

Your kidney numbers aren't bad. I think the upper limit on creatinine is 1.3 for "normal", so if you were a little lower you'd be fine with one or two kidneys. Mine is 1.6, and they say that's ok. I don't remember my GFR number, but I'm sure it's worse than yours. I think mine was 1.2 even with 2 kidneys.

By definition we have CKD. I don't know that it means a whole lot since the definition is based on normal kidney function with 2 functioning kidneys.

You may simply have been a little dehydrated when you did your test. That can shift your numbers on some of the blood tests. Drink plenty of water before your test each time.

Because we are more at risk for kidney disease, we have to drink plenty of water and watch our blood pressure (high BP is very bad for kidneys), keep salt down, and do not overeat protein (high quantities can damage kidneys too). Also stay away from aspirin, ibuprofen and other drugs that are processed by the kidney instead of the liver.

Todd

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Don,

 

A GFR between 31 and 59 is Stage 3 CKD (Chronic Kidney Disease). So what we all have numbers in that range which is "normal" for 1 kidney and being over age 60.  Your 55 is a lot better than my number. Watch your Blood Pressure and see a Nephrologist. CKD is a lot more likely to kill you in the form of a heart attack or stroke than any type of Kidney failure. Just something more to be concerned with as we get older,

 

Icemantoo

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

At the hospital for my brain scan on Monday I  found out my GFR was 45 and was alarmed when I looked that up.  Dr. confirmed that it was the same a few weeks ago when I saw him as well.  They did give me a weaker dye for the brain MRI.

I definitely need to drink more water and cut back on sugar and salt.  I have gained 50 lbs since the nephrectomy in September (I had lost nearly 100 lbs before surgery).

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

you are doing ok Don. As mentioned not perfect. But is your weight? or eyesight?or knees? perfect?  Just keep an eye on it.

Eliezer2
Posts: 58
Joined: Aug 2012

Goes with the territory.  

shamrocklady's picture
shamrocklady
Posts: 19
Joined: Feb 2014

Hi Don,

I do agree with what other's are saying here - there is reduced function of the kidney (not ideal), but a GFR of 55 is not so bad either.

I have some experience with CKD and the lab values associated with them since I work in a hospital as a dietitian/nutritionist. If you can keep your blood glucose under control, keep blood pressure in healthy ranges, reduce excess sodium from your diet, and avoid excess animal protein (think serving size of 3-4oz fish/chicken vs 16 oz prime rib), it will help protect the kidney. I can give more specifics if you need.

Perhaps also ask your doctors if any medications you are taking are also hard on your kidney and see if there are alternatives.

izzycohen
Posts: 64
Joined: Aug 2013

Personally, I would love to turn in an A1C of 6.1

I have done better since losing some weight.  The Creatinine figure isn't horrible.  my surgeon told me he has patients with readings of 2.0 who are doing fine.

donna_lee's picture
donna_lee
Posts: 400
Joined: Feb 2009

Your eGFR is great.  I don't know what mine was before surgery, but for the past 7 1/2 years it has been between 37-42.  eGFR and Creatanine are like stocks and bonds-if one is up, the other is down.  And the longer the kidney(s) have been functioning (think your age) the lower the average eGFR is for that age.

And a good PC will really monitor your BP after a nephrectomy.  You need to keep the BP under control with meds so the remaining kidney isn't damaged.

There are some pretty good websites that will eGFR -but don't confuse it with the sites for Growth Factor Hormone.  Just Google.

Hang in there.

Donna

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

I saw my Onc Dr today. I'm getting ready for 6 months scans. I used to have them every 4 months but insurance [ Cigna ] is now only approving every 6 months even though the Dr has ordered more often.

Anyway, she is concerned about my last bloodwork that had my creatinine at 1.25 - up from 1.13 range the past 12-18 months. Even though that pegs my eGFR at high 60's, it was high 70's or more.

Anyway, hopefully it will go back up again and not continue going down. She left me pretty scared and mentioned I may need to see a Nephrologist. We'll see.

Thoughts?

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Is your Onc serious..?  Your eGFR is awesome for a person with one Kidney.. same for the Creatinine.  Your one Kidney is doing very well indeed..!  Keep in mind your diet and especially water intake will influence those numbers..  I would love to have numbers that good..!  My eGFR is 36 and Creatinine is 1.9

Ron

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

To be clear, [ I think ] 'My Onc' was saying that she was concerned that my eGFR/ Creatinine had dropped like it has in such a short period of time. Not that the 'new' number isn't ok [ as long ] as it doesn't continue to drop.

She did say that [she] would not give me contrast at my current level - Creatinine 1.25, which did surprise me a little since I do read many posts on this board and it appears that several people have said they 'do take' contrast & their #'s appear to even be lower than mine. 

Thoughts?

 

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

FYI, I had a 10 point drop in my eGFR in a 5 week period.. so the percentage is a lot more..!  I went from 46 to 36, but in all fairness my eGFR was in the 41 to 49 range over the last 21 months.

Every Doc seems to have their own opinion on Creatnine and using contrast with scans.  But usually around 1.5 is the tipping point.  I have never heard of 1.25 being left out of the contrast group.  You may wish to ask for half dose of the contrast and see what your Dr says.  My first post surgery scans were with half contrast even though my numbers were pretty bad.. but my Dr thought the risk would be worth getting a good base line.  Since then no contrast and with my latest numbers definitely no contrast.

I will await others to chime in, but it sounds like your Dr is a bit too conservative at this time..

Ron

todd121
Posts: 568
Joined: Dec 2012

adman,

I just went through a year of having my blood work done every 6 weeks (said months in earlier post, meant weeks!), and my creatinine varied from 1.56 to 1.83 up and down each time. It was lower the more water I drank before the test. I think a variation of 0.12 from time-to-time is nothing.

On my blood work, anything under 1.3 was considered normal for persons with 2 kidneys. Before I had my kidney removed, I was having creatinine readings in the 1.1-1.2 range. It's my understanding 1.0 is "perfect" function with 2 kidneys.

My oncologist uses 1.5 as the cutoff. He said I have to have creatinine below 1.5 to get contrast. I suppose it's good to be safe, but if below 1.3 is normal function for someone with 2 kidneys, I don't understand why you couldn't have the contrast with 1.2.

On the other hand, where did I go to medical school? :)

Todd

Eliezer2
Posts: 58
Joined: Aug 2012

You can nraise it if you drink a lot in morning and evening before.   I call it "studying for my blood test"

 

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

I actually have been - and 'do get' 1/2 doses of contrast, which I beleive is 50ml instead of the normal 100ml. Maybe 100ml is 1/2, hienstly not sure.

What I've never been able to get a consensus on is whether the '1/2' dosage is really enough to get a good look or not. More specifically, if I were to chance a 'full dosage' what would they benefits actually be?

We need to get a radiology professional on this board. We used to have a guy but I do not see him any longer. He was a Radiology Tech and actually told me at one time that 1/2 dosage is more than sufficient, but then when my 'Radiologist' provides the reports to my Onc-Dr. he includes the fine print ** " This scan was done with 1/2 contrast so there is a reduced level of ....bla bla bla" - which is probably covering their arse. Who knows.

 

Thoughts?

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

the "Medscan" man popped in a week or so ago. I bet he is lurking so hopefully he can help out with this contrast business. For what it is worth, I always get a half dose for my scans. My numbers are always good. Creatinine of .8-1.0 and gfr of over 60. I review my scans with my doctor and those tumor buggers always show up and are easily seen.

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

FoxHD,

MedscanMan helped me before...a good man for sure.

 

donna_lee's picture
donna_lee
Posts: 400
Joined: Feb 2009

I got a smiley face on my labs yesterday.  eGFR was 43; and as my PC says, for my age and 1 kidney, that's a great number.

You're just a young fart-joke-so your eGFR can be higher.  55 is wonderful.

Donna

Skagway Jack's picture
Skagway Jack
Posts: 70
Joined: Oct 2013

I just had blood work done today in prep for a scan on monday.  My GFR was 46 and my creatine was 1.66.  I was told I would be required to have infusion of 500 ml prior to scan and another 500 ml after.  I am having the barium sulfate and IV contrast.  They said I should drink heavily before and after for several days....I said sounds like fun and they said that drink water heavily just to clarify.  My GFR was 48 in November, I had hoped it would improve but it appears not to be the case.

 

 

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

My last MRI (brain) blood work showed my creatinine to be 1.69 and my GFR was 30.  They used 1/2 dose of contrast.  They generally always used 1/2 dose with me. I'm getting ready for bloodwork again tomorrow for my three month scans next week.  I'm going yo tank up on water this time.  I've usually just had my normal 5-6 pints of water a day, but I think I'll up it another pint or two and see if I can get some better numbers.

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I really apprecaite everyone's comments.  You guys are the most helpful and thoughtful people I have ever met online---and pretty much anywhere else for that matter

 

Thanks again

 

Don

Srashedb
Posts: 180
Joined: Dec 2013

Don:

it has been 18 months since your surgery and clean scans; have you had any medication or other treatment?

My husband's creatinine was 1.3 last week but I don't know what the GFR is. 

Since he had 2 mets when dx, he is stage 4; his oncologist is hopeful after 2 clean scans but cautious as well.

Sarah

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I am not on any treatment. I regret passing on a clinical trial after my surgery. I know with a high grade and invasion of the renal sinus and vein I am at high risk but so far I am fine except for still getting tiried and gaining some weight.

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

Creatinine was 1.15 from this weeks blood test.

Scans are tomorrow. Still only 1/2 contrast.

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