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Post-op questions - update after oncologist

NewDay's picture
NewDay
Posts: 171
Joined: May 2012

Its been 2 and a half weeks since my nephrectomy. My blood work at that time was showing some signs of malnutrition because of a still undiagnosed problem causing weight loss. But, I got a call today from the urologist office that my latest blood work shows possible decline in kidney and liver function. I have to stop ALL pain meds and make some diet changes and go back next Tuesday for more blood work and an ultrasound. My question is whether others had fluctuating kidney and liver function after their surgery that eventually improved. I wish I had asked what they are looking for on the ultrasound since the CT was 2 months ago. I'm hoping this cancer doesn't grow that fast.

icemantoo's picture
icemantoo
Posts: 1511
Joined: Jan 2010

New Day,

GFR is the main blood test that measures Kidney function. Normal is 90. Most doctors are satisfied if after losing a kidney that it is 50 or 60. It also becomes lower as a result of age, high blood pressure diabetes or anything else effecting the Kidney. I have only seen one member of our club with kidney failure in the 2 and 1/2 years I have been on this board. If it gets real low you need to see a nephrologist which I have been doing for a year and 1/2. Mine got as low as 41 and is back up to 49. It has a real scary name between 31 and 59 and that is stage 3 CKD (Chronic Kidney Disease), but if you are in your late 60's with 1 kidney you are going to fit within those numbers anyway. Amother point is that if your Kidney numbers get real low (20's and 30's) you are much more suseptable to a heart incident than Kidney disease. None of what I have said has anything to do with Cancer reoccurance. Kidney failure and dialysis occurs when your GFR is 15 or below. I hope this will inform rather than scare you and hopefully your GFR is at 50 or above.

Icemantoo

NewDay's picture
NewDay
Posts: 171
Joined: May 2012

Thanks Iceman,

I had already seen a nephrologist and been told before the cancer diagnosis that I had some kidney disease. My GFR ranged between 50 and 58 depending which calculation you use (eGFR or GFR). It is now 37 to 41. I was wondering if anyone else had that happen and have it come back up, which is what you say your experience was so that is encouraging.

Kathy

icemantoo's picture
icemantoo
Posts: 1511
Joined: Jan 2010

Kathy,

What helped most in getting my GFR down was reducing my BP to 110/70.

Icemantoo

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

Creatinine
BUN
GFR

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

Creatinine
BUN
GFR

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

I received my blood work follow up today that was done a few days ago. My surgery was 3 weeks ago - Radical on 07/17/12

49 y/o male

eGFR - 67
Creatinine - 1.25
BUN - 13

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

adman, I think you may find this site of help

http://lifeoptions.org/kidneyinfo/labvalues.php

In this layman's opinion, you don't have much to worry about. I'm awaiting my own latest figures, as it happens. I gather they're pretty good but I'd happily take yours (particularly at 20 years older than you!).

Here's hoping you continue fine indefinitely.

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

I'll check out the url you provided. Thank you!

God Bless!

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

Over the previous 6 years since a R. Nephrectomy, my scores range from 34-37. Once, it was a 41. I haven't been able to make any correlation between fasting or not when the blood is drawn, hydration level-did I drink an extra glass of water that morning, weight, etc.
Since that test had never been run prior to the cancer, there is no base line to measure, but I would suspect there may have been some level of kidney disease based upon age (now 69). Neither my PC or Oncologist seem overly concerned with my scores. And I have talked about it with my husband's nephrologist and he said to come see him if they drop suddenly (like below 30).
So now, I just take my BP meds, eat and exercise in moderation, and keep on living.

Tomorrow, the family is going on the 104 mile Jet Boat trip up the Rogue River in Southern Oregon. Taking rain ponchos and warm clothes for the ride, since it's a wet one. The girls love it when the driver does a 360 in mid river and the prop wash comes right back at you.

Take care of your dog-he/she looks like a fun pet. We (our company) have an office cat that has the run of the shop, office and truck yard. Don't ask how much my "free" stray cat has cost over the years. In the past few months he's (it) received I-131 radiation treatment for hyperthyroidism, and I just had to dose him for intestinal tape worm because he's back to mousing and they have fleas.

Have a good weekend.
donna_lee

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

A little off subject here but I too admire your dog Kathy. Reminds me of one of our family pets when I was still at home with parents; he was one of the smartest dogs ever. Still miss him as I do all I've lost over years. Donna, so glad you look after your business cat or maybe I should call him your wall street cat, because I know about the hyperthyroidism investment.

I too am active in TNR which is a program to lower the euthanasia rate of healthy animals at kill shelters. There are four sites I visit every other night where I feed them after I and other volunteers trap, neuter, and return (TNR) them. They are also dewormed and given shots. I love watching them and learning from them. At one site, there also are foxes, rac****s, skunks, groundhogs, and occasional deer and, of course, plenty of cats. People have told me that foxes kill cats, but--where I go--they get along fine. I've only seen a rat or mouse a couple of times and it's usually only once. A great program. (I hope I'm spared any fox hunt stories.)

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Two and a half weeks ago you went from having two kidneys to one, so there will naturally be some decline. We probably all saw that, then a slow rise toward normal. The good news is your doctors are right on top of it, so if your pattern is out of the ordinary, they are considering the options. Try not to worry - you will have more information after your tests next week. Then you can make a game plan.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sound counsel, Mn Girl.

Measures like creatinine levels and clearance rate, eGFR etc, are blunt instruments and need knowledge of the relevant individual characteristics to interpret sensibly. Just to add a little to the information members have given above, I can say what my urologist told me on Thursday.

He agreed that too much is made of the risks of lowish eGFR measures (and the hazards of contrast, which he says are only something to be worried about with a level below about 30). Normal GFR for a young white male is about 120. To the extent that creatinine level is a factor in the calculation of eGFR, it's greatly dependent on body composition, exercise habits etc, so slavish regard for the figures is misconceived if it fails to take individual differences on board. The range between 30ish and 60ish is not something to be terrified about, although higher is obviously better.

As has been noted by others above, eGFR recovers over time. After my nephrectomy, mine stood at around 53. In April, soon after a second op. (not involving further kidney loss) it was 59, which my advisers are completely happy about in a 70 year old.

NewDay's picture
NewDay
Posts: 171
Joined: May 2012

Ultrasound says my kidney looks good and my blood work is not normal, but getting better. She said what she was looking for was possible hydronephrosis, but didn't find it. So all around good news.

I have my first appt with an Oncologist tomorrow.

Thanks everyone for all of your info.

Kathy

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hope this is the first of many positive reports Kathy. Keep us posted!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Kathy, best wishes for tomorrow. Now you will go in with good understanding and intelligent questions. The more cerebral the questions, the more the doctor is able to discuss details in depth. That makes a huge difference in the relationship and the doctors appreciate not having to "dummy" down. Keep us informed.
Fox

NewDay's picture
NewDay
Posts: 171
Joined: May 2012

Saw the Oncologist for the first time today. He has a lot of experience. I really like him. He thinks it is reasonable to request a second opinion on the pathology because of the "unclassified" type so I'm going to pursue that. He found it hard to believe Emory wouldn't do it. He plans a baseline CT in 1 month, then 4 months. Depending how that looks, might go to 6. He said I would qualify for a trial for Afinitor if I'm interested so I will research and think about it. If anybody has info, that would be appreciated. I feel much better about this plan. As it was, with the Urologist, my next scan would be December and then every 6 months for 2 years and I was only going to be seeing his physician's assistant going forward. It really does help to do your research before seeing the doc so you understand what he is saying and know what questions to ask.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Very glad to hear how well it's going Kathy. It sounds as though you've got well on top of the situation and are putting your best foot forward. The oncologist seems like the sort of man you need - considerate and switched-on.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Nice work. That is how to be effectively proactive. I hope many others will see how it's done. Good luck with the trial.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, I'm re-assured to see that the stalwarts on Acor, like Peggy and Robin, and others, have echoed the thoughts I expressed here on your best way forward.

Over there, as you've discovered, are many very long-term posters who have seen it all and have excellent contacts. (Being on the other side of the Atlantic, I can offer no such help so I'm delighted you're getting such assistance over there). Moreover, now that we've got our own Susan here, in our new major asset (Jeff), none of us needs lack top-class help in difficult decision making.

I feel confident things will keep going well for you and hope to hear your malnutrition conundrum is solved soon and that you'll keep us posted on both forums.

NewDay's picture
NewDay
Posts: 171
Joined: May 2012

Thanks Tex,

If you have seen my posts there, you know I kind of went off the deep end again. A lot of it comes from my fear of making the wrong decision. I have a habit of later "shoulding" all over myself with "I should have done this", "I should have asked that". I think that once I am convinced that I have gathered all available information and made the right decision, I can settle down. This site has been invaluable in terms of information, support, and wisdom from experience.

Thanks everyone for your help

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Snap! I have exactly the same problem Kathy. Anyway, we're doing our best to help ourselves aren't we? I hope you've lined up a good team now and are getting all the answers you need.

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