Chronic kidney disease

Hello all

i have just undergone my third treatment of y-90, (1st cycle). And have not had any major complications apart from now apparently i have chronic kidney disease. Which may have been caused by previous infections when i was younger, but possibly from the treatment. No-one has ever really told what this means as a NET patient, if it is common, if it will go away once the side effects of the y-90 has subsided.

Is there any of you who have kidney problems?

Love Rach
xx

Rach,

I am sorry to hear this. How did you discover it?

I saw your feedback from the final y90, I bet you're glad it is all over. I haven't been as good since the 2nd, but Dr Buscombe says that's normal and my blood tests have been fine. I'm tired all the time.

I hope you get some help with your kidney problems, don't we just have enough to deal with.

Ann

Hi Rach

Who measured your kidney function? My GP was monitoring my bloods for a while & their standard calculations showed the onset of chronic kidney disease - but later my consultant at the Royal Marsden queried the result; as their tests showed no change in the bloods. Apparently there's a calcuation based on your creatinine levels, age and other factors that they use for mass screening - but its not the most accurate way of checking kidney function. It seems I had a more accurate test (more detailed blood test - I'm not sure) at the Marsden a year ago, everything was fine then, and no change in my bloods since then.

I guess that the team doing your y-90 treatment would use the more precise test, but if the result came from other routine blood testing it might be worth asking them to doublecheck?

Anyhow I have to behave as if I've got it at the moment - but all that means is no aspirin or ibuprofen, and check very carefully before taking any new medicine. I think (but I'm not sure & haven't been able to track down good information yet) that if it gets serious it could tip the balance against having some other treatments or medicines. And I sure want to hear anything you find out about the chances of recovery if it was a side-effect of the y-90.

David

Hey david,

well i think two results have been measuring my creatine levels by my gp, but i think has since tested differently. These third results showed a improvement, but still a bit high.

I am seeing a kidney specialist at the southmead hospital in bristol this friday. I'll ask him if the y-90 tipped my tipped my kidney function measurement this high. For quite some time, before i started the y-90 the drs have been saying i was 'borderline'. And it was pre y-90 bloods that were done by my net team that confirmed kidney disease, not my gp.

Your saying you are having to be careful at the minute, does that mean you are not always suffering from it? Can it therefore come and go?

I've been having abit of kidney pain too, do you suffer with this?

Rach
x

Hi Rach

What I meant was, in my case I'm not convinced that I've got a kidney problem, and I'm hoping that more tests at the Marsden in the New Year will give me some good news this time. I don't know if kidneys can recover lost function, I guess it depends on what caused the problem in the first place - maybe recovery from any Y-90 damage is more likely than, say, long-term use of some medicines? That's why I'm keen to hear how you get on and what your specialists tell you.

I did have mild but continuous pain in the kidney area for a few weeks (before any of the tests showed anything, so if it was in my mind I must be psychic as well!), but it hasn't been back in 6 months or so.

Good luck at Southmeads (today) - hope you get some good news.

David

Hello again,

ok, so it seems that the chronic kidney disease is a completely seperate issue to the carcinoid. The kidney dr believes that i have had kidney disease from a young age and that having the y-90 treatment has just damaged my kidneys further rather than causing it.

More tests, scans and appoitments to undergo... i am totally fed up. Its at stage four of the disease so its serious, and the dr said there is a 50/50% chance of recovery from the y-90. Apparently before my third treatment i had 45-50% function it then dropped to just 25-26% and then went back up to 32%.

Fingers crossed they will recover back to the 50% mark, which he said is enough to have a normal life with no treatment, dialysis was mentioned if it drops any further.

He confirmed no ibuprofen and just said drink plenty of water and that cranberry juice is good.

It would be nice to hear how the investigation goes with you David.

And Ann, how are you? I hope the tiredness has improved?

Best wishes
Rach : )

Hello all

i have just undergone my third treatment of y-90, (1st cycle). And have not had any major complications apart from now apparently i have chronic kidney disease. Which may have been caused by previous infections when i was younger, but possibly from the treatment. No-one has ever really told what this means as a NET patient, if it is common, if it will go away once the side effects of the y-90 has subsided.

Is there any of you who have kidney problems?

Love Rach


How is your kidney???? Y90 is tough with CKD...I used Lu177 and now have better kidney performance!

www.renalcarcinoid.com
steve