Kidney issues -anyone else?

DianneS · 09-16-2009, 08:34 PM

Hi all,

I am stumped as to why this is occurring. In 2003 my normal kidney function went from the 80's to the low 60's. I had not had surgery, infections or anything to cause this. I moved from the US to Canada and my medical records stayed in the STates so it wasn't until this year that my doc discovered that my kidney function was a 'bit on the low side'. This was after all my chemo was done (not the herceptin). She suggested I see a kidney specialist which I did. My creatinine is 95-96 and he can't really find anything else out of order with my bloodwork. I did a 24 hour urine - all was fine. Today I got results from labwork for kidneys and it is now 50. A downward trend, and I"m scared!! No one is blaming the herceptin. I have a herceptin infusion tomorrow and the LAST one Oct. 8...am worried about renal failure. They did an ultrasound last month and it was normal. Now they want to schedule me for radio-isotope.

And I thought I just had to worry about the her2+ thing. I drink water and keep myself hydrated. I don't smoke or drink. What on earth is causing this? Anyone else had problems during chemo or herceptin with kidneys? Did they get better (close to normal) when herceptin was done?

ARRGGHHHH
Dianne

Jaimieh · 09-16-2009, 08:49 PM

I have had kidney issues since starting herceptin BUT a birth defect was discovered during a bone scan and that was causing a pocket of fluid to accumulate above my right kidney. I had surgery to correct the problem Aug 5 and I find out on Firday how well the surgery worked. My labs never showed any problems but there was something wrong.

I hope they figure out what is going on. BTW, I think I have had the radio-isotope procedure and it's not fun thanks to the lasix they give. However after everything that you have been thru it's fairly easy.

DianneS · 09-16-2009, 09:14 PM

Hi Jaimieh,

So glad you posted a response to my question. I have not found a doctor yet who says herceptin is to blame for my lowered kidney function. Have you?

I am glad they found the problem with you. Poor girl - having to undergo yet more surgery! How're you doing?

What is the radio isotope test like? What does the lasix do - make you pee a river? It's not a painful test is it? I'm such a wimp anymore.

Dianne

Jaimieh · 09-16-2009, 09:23 PM

No one will say it is from herceptin. I am doing okay, I just also have implant issues but they will be fixed in 8 hours. They will be removed and I will be waiting for reconstuction again

Now I just hope that I heal.

The test is an IV with the RI and then they give you the lasix and you are supposed to hold it for 20 min. I felt like that commercial "gotta go, gotta go, gotta go right now" and to make matters worse the room I was in was outside of the bathroom so I could hear the toilet flushing....it was cruel but I survived. I go on Friday for another one so I will come back with the details this time.

You are so close to being done with herceptin. Congratulations!!

schoolteacher · 09-17-2009, 06:37 AM

When I had my blood draw in August my kidney function was off also.

I always asked for my blood results to see what is going on. I got the results while I was in the infusion room and was concerned about them. The doctor did not even say anything to me about these previous blood work and my kidneys not functioning properly. The nurse who was doing my infusion was concerned, and she tried to get the doctor to call. He never called. I was very disappointed about this. I am going to ask him about these results next week when I go for my Herceptin infusion. He did do additional blood work to see how my organs were functioning. I know this because the woman taking my blood told me this.

I would like to know the results all of you receive. I have been trying to drink water throughout the day to see if this helps. I am going to try and drink more water while I am taking my infusion.

If any of you know any way to affect the number for the creatinine level please let me know. This has also been worrying me.

Amelia

DianneS · 09-18-2009, 08:57 PM

jaimieh,

Sorry about the implants. What went wrong? I am living with prosthetic boobs, which is strange. I had gotten attached (no pun) to my 55 year old boobs, imperfect as they were. I just can't get up the nerve to have more surgery for a boob implant. I don't think my body would take anymore, so that is that!

Wonder why docs don't want to talk about herceptin causing kidney problems? My onc said 'it's the heart that weakens and that causes kidney problems'. DUH. But my heart function via echocardiogram has always been 70% which is very normal and very good. So why are my kidneys screwing up?

I did #16 herceptin yesterday. No one wanted to discuss my kidney GFR being at around 50. My nephrologist said not to focus on the GFR which can change daily, but to look at creatinine numbers. In Canada anything over 95 is higher-end. Mine was 96, which wasn't that bad, so I still don't understand how my GFR was rated at 50.

Anyway thanks for the info on the test. Sounds not fun, but nothing so far to do with a hospital has been! I AM SO SICK OF HOSPITALS, DOCTORS, AND DRUGS!!!!!

Dianne

DianneS · 09-18-2009, 09:06 PM

Hi schoolteacher (Amelia),

Interesting that you are having some kidney problems too. Is your heart function good? Mine was when an echocardiogram was done in August.

I also request to see all of my lab work and I keep the copies for future reference. You just have to be your own advocate these days!

I drink lots of water as well. It has not seemed to make any difference so far. But I think it does help get the drugs out of the system faster.

My creatinine has been as high as 100 but is going down. From what I have been told, exercise, stress (none of that around here eh?)diet, drugs, and yes amount of water one drinks can affect it. But my GFR is going down, which I don't like. And I don't understand why, since the creatinine is dropping. I guess to get the GFR labs use a formula and those formulas can change depending upon the lab. My nephrologist said not to focus on the GFR or it would drive me crazy (I'm there!). But what is causing the kidney dysfunction? I have been done with the toxic chemo since March so they can't blame that.

Anyone had their kidney function return to normal after finishing herceptin? I'd kinda like to keep my kidneys working, after all that I have been through!

Dianne

Marily · 09-22-2009, 01:08 AM

Hi ,
I too have been seeing changes in kidney numbers. My Onc. said don't worry but the next month the egfr went down to 30.I worried and found a nephrologist.! I have had tests and blood work done and see Kidney specialist again next week. I have been off Herceptin for a year,(took it for over 8 years) and remain on Aromasin. We re-looked at the pills I was taking ...removed all NSAIDS, my pain pills, most of the vitamins and changed me to one vitamin pill that people on dialysis take.(I did have to go back on Magnesium since cramping came back something awful) I am trying to drink more water but have always been bad at that... Why after 10 years Out , and all the real bad cancer drugs stopped am I now finding out about kidney problems? I reacted many years after being on Herceptin with congestive heart failure... maybe I am just slower to have things go wrong? I would really love to find out what to do about this problem. Just don't want to end my days with dialysis. Especially since NED after stage IV breast cancer. One other thing .. I have just had spine surgery again....this time for lower spine area, last year for 4 neck bones.. is anyone having this bone degeneration also? Will follow this link with much interest.
hugs to all
Marily

Jaimieh · 09-22-2009, 06:05 AM

Well I got my kidney test back yesterday and my surgery worked. So both of my kidney's are considered within the normal range. Whhhooo for it working. My nephrologist will be monitoring me every 6 mths from now on.

Dianne~ I too loved my itty bitties but I chose to remove both because of my age (32) and how dense my tissue was. I had expanders followed by implants that failed so they replaced them with smaller ones and they failed. No one really knows why I heal at the incision site and then after 3 weeks I open back up. There is no infection or anything "wrong" it's almost like my body was rejecting something inside of me. So now I need to heal in order to try another form of reconstruction.

michka · 09-22-2009, 01:42 PM

I have abnormal creatinine results since 2 months and am going through other tests right now. No explanation yet. I was thus very interested by these posts.
I 'll keep you informed if I have significant results and explanations.
Michka

Karen Wheel · 09-22-2009, 02:10 PM

CRAP!

Dianne - wow - I've had a bunch of issues with bladder since I have started this darn roller coaster in April (09) and still feel crappy!!!!!! But my oncolgists are saying I am fine that it is just an infection (been on antibotics for 2 weeks!) ugh.... however they don't talk about these tests or kidney function, so now I'm worried. Maybe it really is the Herceptin!?????

I would say stay on top of it (and so will I!) now I want them to run some more tests on me --- shoot!

However, without you all, I would feel so alone - so thank you so much for sharing!

Please let us know what happens....
xo
Karen

DianneS · 09-22-2009, 06:25 PM

Hi all,

My GFR last week was 50. I started out at 62...so not optimal to begin with. No one discussed my kidney function or lack thereof until AFTER chemo. I am ticked off about that. In 2003 the GFR went from normal 80's to the 60's and no one told me. I feel ok, maybe tired sometimes but could be the herceptin.

Thursday I am having what is called a blood GFR where I will be monitored for 3-4 hours. I believe they will use a dye/radioactive tracer to see what my kidneys are doing. I saw my nephrologist Sept. 2 and am happy to be getting this test within the month....he said my 24 hour urine looked 'ok' whatever that means.

Here is the interesting part about herceptin that I'm finding out: I talked to my pharmacist who has nothing to gain by telling me what herceptin can do. He looked it up and showed me where about 1% of women will have kidney problems with herceptin. My onc and the cancer agency deny this, saying it's the heart problems first that cause the kidney problems. But my echocardiograms have consistently been at 70% which is excellent. I am told by the onc that herceptin excretes thru the liver, not the kidneys. However, I don't pee out of my liver, so the stuff must go through my kidneys at some point (duh

) and that is what could be causing the problem.

I will let you know what I find out. I doubt I'll learn anything Thursday. This is so stressful after everything else I've been through! When does the round of doctors stop, anyway?

Hanging by a thread,
Dianne

DianneS · 09-22-2009, 06:27 PM

Karen and Jean, I tried to PM you back but got timed out & lost everything I typed! So I give up for now. But know that I'm thinking of you and will try again when I'm back in town.
Dianne

DianneS · 09-22-2009, 06:34 PM

Michka,

I'd be really interested in knowing what your test results are. Please keep me posted. Did you finish all herceptin tx's?

I finished 16 herceptins Sept. 17 and am not going to do the last one. I don't know how the drugs you're taking might affect your kidneys, but I do know that the Arimidex that I started and stopped within 3 weeks comes with a warning about taking it with kidney disease. The benefit I would get is only 4-6% because I am weak ER+ so I really don't think I want to take the risk.

One thing about GFR that my nephrologist said - there are many things that affect it, and it can go up & down during the day. Drugs, exercise and diet can affect it. I guess the one thing to look at is creatinine levels. Mine was only one point above normal so I really don't know why my GFR would be at 50. There is a formula that labs use to calculate GFR and many labs use different formulas, making it hard to determine the GFR - which is why they are going to do a blood GFR with radioactive tracer this Thurs. to get real time kidney function. I hope you get some good news and get to the bottom of your kidney issues! We kinda need our kidneys!!
Dianne

DianneS · 09-22-2009, 06:44 PM

Jaimieh,

Yay! So glad your surgery was successful! That was an interesting problem you had with your kidneys.

I have not seriously considered implants because my body has had enough. I've had aneurysm surgery in '06, ovaries in '08 and bilateral mastectomies in fall of '08! Enough I say. My hubby will have to get used to boobless me

What type of implants are you considering? Is silicone the best with least rejection by the body? I hope you find something that works for you.

Dianne

DianneS · 09-22-2009, 06:56 PM

Marily,

Thank you for sharing. That is so interesting about your experience with herceptin and kidneys. Why don't the doctors tell us about this possibility?

Did anyone follow you medically to tell you about your congestive heart failure - I mean, did they know it was happening? Do you have high blood pressure or anything else that could be making your GFR abnormal?

My nephrologist also told me about NSAIDS (Advil, Motrin, etc) and the damage it does to kidneys.

Also some high blood pressure pills, such as Ramipril, can cut off blood supply to kidneys, so just a heads up if you're on BP meds. Maybe check with your doc about kidney interaction.

I hear you Marily, you've been through way too much to have to deal with dialysis! That's how I feel too. I think, tho, that you have to be in the below 20 GFR before they get worried. But I ain't going there!

About bone degeneration - can the Aromasin cause that? I know that aromatase inhibitors can cause this, and my onc said if I take it I would have to be on some bone building medication.
There are meds that rebuild bone. There is also a natural product called Strontium II. It is not the radioactive type but a different type. You can google it and see what you think. Do you take an extra calcium pill - have you talked to your doc about that?

I hope some other ladies post about the bone degeneration but maybe that's a big enough topic to be it's own thread!

Hope you are feeling better, Marily. You are a real trooper.

Dianne

Marily · 09-23-2009, 01:38 AM

Hi again...
First to Karen, It was a common thing for my "little group of Herceptin friends"to have urinary track infections. We shared that information with our docs at that time but they just would not put it all together as we did. lol. Talk to your Onc. about it ... and drink cranberry juice (lots of it) that will sometimes change the ph in the bladder so you won't have as many problems.
** bladder and kidneys don't have to go together.
I still think the Doc's are learning on us .Those long term side effects are showing up in us " Herceptin girls", and they are just finding out that it effects not only heart, but kidneys and bones..

Yes Diane, I was watched carefully from the start of Herceptin for CHF but after a few years, they thought I was passed that problem. Surprise!! after three years, I went down very fast to 21, but with a fantastic cardiologist, and great new meds (Coreg had just come out) my heart is very beautiful as my cardiologist calls it and my ejection factor is at 65. I remain on Coreg but 1/2 the dose I needed at first, and also on Bp meds (water pills) which the nephrologist and cardiologist just discussed.... as a new finding came out showing that two of the pills make a narrowing at the main blood supply to the kidneys and they agreed to change me off those meds to safer ones. My actual bp is low. (with the meds I am on.)

No one mentioned anything about kidney problems to me...and I only found out when my new Onc, mentioned my results on a test.. the 40 egfr...
I immediately went to the nephrologist .... the new Onc felt I had nothing to worry about ... BUT...when numbers are off I worry, and expect them to also .... ( unless this is something doctors are seeing in all of us and just not saying so, or understand the reason why?)

Yes Aromasin also causes bone degeneration.. I was increased in my D and my calcium.. when I changed from Tamoxifin.
Also NSAIDS ARE BAD FOR KIDNEYS...and
I have been on NSAIDS for quite a long time. I was worned about taking them, but I am allergic to most pain meds...you name them I am allergic to them.. and the NSAIDS worked... we sort of looked the other way... had to... I was having no feeling in arms dropping things horrid headaches neckaches etc ... we finally found a neuro surgeon who knew what to do ... and I tried to remain off the NSIDS. But... then legs, lower spine got worse and worse and I could barely walk or climb steps so ... went back on the NSAIDS... the anti-inflamitory meds were really necessary.FOR RELIEF.
"When we got the neck to heal ....than he would look at the legs..." The first neck surgery did not take ... one bone refused to grow and my spine continued to disintegrate.... so when feasible (a year later) he did the second surgery using a different growth stimulator for the bones (one that I could have only if I failed the first stuff...than I could be qualified to use the second which was not ok'd for this use yet..) He added another bone to be redone, Thankfully all 4 bones grew and my neck has been relieved of most of the pain and the numbness. We still have to do a little canal where the bones settled and are disturbing my left arm but that has to wait... now till my lower back was fixed. We did a trial surgery 2 months ago at the site of a ruptured disk and the worst bone damage, and it worked...
My husband says even my face has changed...more relaxed, lol... I am no longer gritting my teeth and I am walking many blocks, going up steps and am just about pain free in my legs and lower back... I take extra st Tylenol if I really need something for pain now...

I had asked my Onc years ago about bone strengtheners.. (they were out there and a few friends were on them.) She told me we should wait???? (long story but there is much longevity in my family and extra good bone numbers.... I dropped fast after starting Aromasin but not to the below normal mark... ( for me, I think that huge fast drop showed more than the set norm level... ???) but that was not taken into consideration... by my Docs. or the people who make the rules.

I have been doing lots of readng and compiling reams of information, researching the new RANK ligens testing and the meds they are looking at... and am again going to talk to my oncologist about trying to... not only save my bones, (but also if you have been reading about their findings, It is supposed to take care of the minute cancer cells that have lodged in the bones and make them unable to awaken, and start bone cancer down the road 10 years or so..) I know it is just being studied but I want My Onc. to be with me on what is happening. There is a need to help my bones,,, and one of the places they said I had mets involvement, was in the pelvic bone..so...

Well that got long ... sorry......but Diane, you had so many things in your last note I felt I had to try to answer some... Thank you for the info on Strontium II, I will look at that.

hugs,
I know we will get it together... and possibly make it easier for those that follow us.
Marilyn

DianneS · 09-23-2009, 12:33 PM

Thanks, Marily. You're staying on top of a lot of stuff. Good for you! We certainly have to be our own advocate these days. Thank goodness for internet even though a lot of info has to be sifted through.

I am alarmed at what happened to you with herceptin. Was your heart problem sudden - you say you went down very fast? How often were you being monitored? Did they use echocardiogram or MUGA?

And you are right about the kidney/bladder issues. One does not necessarily go with the other. It is a good idea to be aware of your labwork and watch the numbers but also be aware that labwork is going to go up & down while doing herceptin and for awhile afterwards. My GFR is up 5 points at 55 this week, so that's good. We will hopefully find out what is doing this tomorrow during the test.

Talk to your naturopath or doc before taking Strontium II. It may not be available in the States. This is not the radioactive type which is 69 or 89 I think. I have the info downstairs and will dig it out of my files if you want me to. I have not taken it yet because on the bottle they don't recommend anyone with kidney disease take Strontium II. Altho my doc just told me he would say I am 'compromised' not kidney disease. I'm still playing it safe

Dianne

momo · 10-05-2009, 04:16 AM

Glad I found this post. I have been complaining about peeing excessively especially during the night, but Onc. just looks blank and won't admit to it being chemo damage of bladder (finished 6 months ago) or Herceptin (had 5 sessions).

I still feel uncomfortable even when I have just been to the bathroom. Not pain - just irritated. GP said probably infection, but anti-biotics did nothing. I have had a pelvic scan which was clear.

I have also been very tired, and constantly yawning (as if I'm not getting enough oxygen to brain), feeling brain dead and unable to concentrate.

A search on kidney symptoms brought this up "Healthy kidneys make a hormone called erythropoietin that tells your body to make oxygen-carrying red blood cells. As the kidneys fail, they make less erythropoietin. With fewer red blood cells to carry oxygen, your muscles and brain become tired very quickly. This condition is called anemia, and it can be treated."

It also said frequent urination and other stuff.

Also read that Herceptin can damage kidneys.

So, I will go to my GP and get a blood test as my Onc. would not do one.

WolverineFan · 10-05-2009, 12:16 PM

I am just now reading this thread and find it very interesting. I've had loads of problem with fatigue, and have a burning sensation every time I go to the bathroom. My onc tested for infection, but said everything came back good. Although I get a copy of my blood work each time, I don't see where it lists anything for the kidney or GFR, but it could be that I am still learning and don't know all what to look for. I mainly focus on my blood count levels.

Thanks for the information.