Stopped chemo due to acute kidney failure, any advice?

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Camellia
Camellia Member Posts: 2
edited November 2019 in Chemotherapy - Before, During, and After

Hello everyone,

Lovely to meet you all. It's been quite a rough journey for me in the past several months. So I'd like to share my own experience with you and look for any advice you might have on planning my next steps. Apologies in advance that the post is quite long!

1. In July this year, I was diagnosed with invasive mammary carcinoma with mixed lobular and ductal features (ER+, PR+, HER2-, Ki-67 25%), with a size of 4.5cm on my right along with two tiny benign masses on my left. My breast surgeon recommended neoadjuvant chemotherapy mainly because of the large tumor size. The plan was to complete A+C for 4 times and then Taxol for 4 times.

2. It seemed like it was going smoothly but then I found a weird pattern. Because of the color of adriamycin, I was getting a reddish color in urine for the first two days and then it was going back to yellow again. But on the 5th day of my every infusion, I was getting pretty red urine again for a day or two. At first, I thought it was my period coming out oddly but it was repeated in the second and the third chemo cycle. I asked about this during my call with one of the nurses and they said the reddish urine sometimes lasts 4-5 days.

3. I waited until my third infusion appointment and told this to my oncologist. (ha.. I shouldn't have waited that long..) He ordered a urine sample and it turned out some kidney numbers were abnormal and I was admitted to the hospital on the same day. After more tests including kidney biopsy, the renal doctor told me it was something called RPGN (Rapidly progressive glomerulonephritis) with 25% of crescentic formations in my kidneys. This means I've already lost 25% of my kidney function, I have to take high-dosage steroids for 6 months, and I need to monitor my kidneys for the rest of my life.

4. I have had some underlying medical conditions like hypertension and rheumatoid arthritis, but I never had any serious kidney problems other than mild proteinuria sometimes. The doctors are all saying it's not the chemo that caused kidney failure and there's no known correlation between the two so I need to continue the chemo treatment. I agree that chemo didn't cause all this, but it might have triggered something in my body or might have worsened any hidden kidney issue. That's why I'm afraid to continue the chemo treatment.

5. My oncologist suggested I switch to Taxol and finish chemotherapy. My surgeon said it's up to me. I decided to get surgery first and got bilateral mastectomy done last Friday. I really hoped that no lymph nodes were involved so I could pass taxol but unfortunately, cancer spread to two lymph nodes and my surgeon said I might have to continue taxol.

6. I'm waiting for the biopsy result and my next appointment with the surgeon to learn more details. I'm wondering if chemotherapy is absolutely necessary in this case. My kidney function seems to be slowly improving with steroids, but I don't want to risk any other unknown side effect in my body.

-What are the risks if I refuse remaining chemo (taxol)?

-What are some other alternative plans for me?

-What questions/more tests should I ask my doctors?

-Any risk of doing chemotherapy while on steroid (I'm taking Prednisone 60mg a day)?


Any information/advice would be helpful. Thanks a lot for reading and listening to my story!

Cheers to everyone.


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Comments

  • RebzAmy
    RebzAmy Member Posts: 322
    edited October 2019

    HI Camellia,

    Sorry to hear that you've been unwell. I personally would want to throw as much chemo as possible at the cancer, especially if it's spread to the lymph nodes, to give you the best chance. But, if you have an underlying condition, like you have, which might affect an existing condition, your oncologist needs to tell you whether if it was themselves they were treating, what they would do. It sounds like the Taxol may not cause the same problems as the first chemo drug, but your oncologist should advise. Good luck with whatever you decide to do. Hugs

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  • hapa
    hapa Member Posts: 920
    edited October 2019

    Ask for an Oncotype test. It will tell you whether or not chemo will reduce your risk of recurrence. If it doesn't or if the reduction is small, then I think the additional risks of chemo aren't worth it. I'm surprised your doctor hasn't ordered this already.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2019

    Remember that it's possible to have two completely unconnected conditions in your body at the same time. It's not always cause and effect.

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  • Camellia
    Camellia Member Posts: 2
    edited October 2019

    Thank you everyone for kind advice! I'll definitely ask for an oncotype test to get a better picture of the benefit I'm getting out of chemo.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited November 2019

    Camellia, if I may suggest--do see a kidney specialist right away. I am stage III kidney disease (I'm sure chemo didn't help but who knows). I started seeing a kidney specialist a year ago and I can't tell you how much it helped me and I understand so much more about this disease. There is a lot that I have been able do do with diet and it has stopped this from progressing. Your kidney specialist should probably be part of your cancer team. PM me if you would like to 'talk' more.

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  • kaaadams
    kaaadams Member Posts: 43
    edited November 2019

    Camellia, I agree with getting the Oncotype DX test for sure. If your number is 25 or above, they always recommend chemo. If your number is 24, no chemo! At least that's what my MO from OSU tells me. Taxol has less and different side effects than the "Red Devil" adriamycin. I am a nephrology nurse and you should definitely see a nephrologist (kidney doctor). They specialize in kidney care and you have an acute kidney injury which means you have a good chance of your kidneys recovering. However, you must be monitored closely for the rest of your life to prevent further decline if possible. If your kidney doctor recommends a renal diet for your kidneys, or fluid restrictions, follow those dietary guidelines closely. People underestimate how much this can save you from having chronic kidney failure.

    Cowgirl 13 - you know what you're talking about girl! Camellia is lucky to have your advice.


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