Kidney issues -anyone else?

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.