jane99's Message Board Messages

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creatinine levels

by jane99 - May 23 at 10:53 PM

I had a nephrectomy 10 years ago and my kidney function blood levels have been perfect...until about 6 months ago when things started to go haywire.  My creatinine started inching up little by little and is now 1.2.  My egfr has been going down.  My primary sent me for an ultrasound of my remaining kidney, which came back fine.  I am not diabetic and do not have high blood pressure.  I stay hydrated.   He does not know what is going on with my kidney.  I am scheduled for my 6 month ct scan next month, which I usually have with contrast, but I am thinking my creatinine is too high for the contrast this time.   Anybody else have problems with their levels for reasons known or unkown? Or any advice about the ct contrast?  Thanks.

Hi--it's been quite awhile since I have posted, years actually.  RCC stage 4 with retroperitoneal masses and vena cava resection.  No distant mets.  Have been in remission for about 7 years.  Was on votrient but had to quite 2 years ago because of cardiac complications.   Have been having some nerve type pain in my right hand (same side as rcc) but just wrote it off to arthritis, which I do have.   Today in the shower I found a grape sized lump on my upper arm.  Not painful in and off itself but if I poke at it, it does hurt.  It is under the skin.  No bruising or redness.   It has been so long that I almost got to the point that I didn't think every little ache or pain was somehow cancer related.  Am going to call the oncologist next week.  But part of me says just wait and see if it goes away.  It is a hard lump.  Not sure why I never felt it before.  Does this ring a bell with anyone? Thanks.



My son asked my oncologist about interleukin a few years ago and we were told it would be too much for me. You must be superwoman! Actually I have been on sutent, affinitor, torisel (I think that is what it was---seems like ancient history). Nothing worked for me until the votrient. I had grade 4 cancer and it was very aggressive. I will check out your blog. Thanks.

Wow. Interleukin is really tough from what I hear. Glad it has worked for you. Do you have ct scans regularly? I have them every 6 months or so.  I am taking 400 mg of votrient a day; I think 800 mg daily is the usual dose. That was what I was supposed to take but I got the dose wrong and by the time I figured it out I was in remission, so my oncologist said to keep it at the lower dose. I am a small person anyway, about 100 pounds, so I guess it works out ok. I have the usual tummy issues with votrient, but the fatigue is the most annoying. After my heart attack, I had a three week votrient holiday while I got used to the new heart meds and it was so nice not to have to worry about being sick to my stomach or counting the minutes till my next nap, but I can't really complain too much as I have been in remission much longer than anyone thought I would be. 

I did have clear cell with localized mets to the lymph nodes and vena cava. Had three surgeries, the last one in Sept of 2011.  Would like to go off votrient at some point but since I have had two recurrences in the past, my oncologist feels it is better to stay on it to keep anything new from cropping up. Thank you for your response. How are you doing?

votrient and cardiac issues

by jane99 - August 09, 2016

Has anyone had any cardiac side effects from votrient? I have been on votrient for almost 5 years and it has been very effective at keeping me in remission. At the end of June I had a mild heart attack that was caused by a cardiac spasm. My cardiologist said he sometimes sees these spasms in chemo patients. I had never had any cardiac issues before, although when they did the cardiac cath they found a 50% blockage in the vessel where the attack occurred. I am now on heart meds. I know votrient can cause heart problems and am wondering if anyone else has had anything like this. Thank you.

I have tried taking it both in the morning and at night to see if there is a difference. I prefer to take mine in the evening. Everyone is different but the idea of sleeping through the effects works for me. Good luck.

cholesterol meds

by jane99 - May 18, 2016

My primary doctor wants me to take a cholesterol lowering med. He suggested Lipitor. I looked it up and it looks like it is hard on the kidneys. Plus it causes gastro issues which I have enough of because of my votrient. Can anyone recommend an alternative, or has lipitor worked for you.


I am sorry to hear about both of your battles with rcc. I haven't been on opdivo, so I am no help there. Votrient has worked for me for the last few years. But as far as the pain goes, I have had pain on the opposide side of the tumor before and ct scans have shown nothing. Now after three surgeries I have some pain in various spots which are from scar tissue hopefully. I know how scary it is when pain pops up. I am due for a ct and bone scan this month and am keeping my fingers crossed. Best of luck to you and your family members.

The best thing would be to ask your doctor. I find myself that I do better taking them at night.

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About jane99

Renal Cell Cancer

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