I was recently diagnosed as stage 3 kidney cancer after a radical nephrectomy. My
oncologist told me that kidney cancer cell didn't respond to chemical therapy and radiation therapy, and at my stage, there is only one target medicine, Sutent, that I can try. Sutent doesn't extend the year of survival. It only pushes off the recurrence of the cancer for average of 1.2 year. The treatment lasts one year and it has severe side
effects. I think it is not worthy it to suffer for a year in exchange of 1.2 year of cancer free life. But my doctor said it was the only option at this stage. However, if my cancer advance to stage 4, there is immunotherapy. I came here to ask if anyone knows any alternative options as to how to treat a stage 3 kidney cancer. Thank you!
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Anna0729
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My wife mRCC Stage 4 since August 2012. She lost her left kidney and it spread to 5 sites.
Has been on one and only one TKI drug, Votrient for #68 cycles(months). (5.6 years). She was on the high dose of 800 mg until April 2018 from then on 600 mg. They cut her down because she is doing so well. It depends on the persons bodies response... She is the pride and joy of her oncology team. Once your on a TKI and it’s working it’s for the rest of life...CT Scan that was done on Friday. I had results Friday night. Cancer remains STABLE. On new protocol of Votrient 600 mg. daily (from 800 mg. daily). It looks like we will stay on the new protocol.
I actually went from stage III to stage IV and received Interlukin-2 which they stopped after two treatments then Sutent. Sutent combined with IL-2 bump? did the trick. All my cancer shrank and now I am NED. I lasted three years on Sutent starting out high dose and adjusted throughout the years. My doctor does not know if it was the Sutent or IL-2 that did the trick. I believe it was the combination. At your stage, I don't believe IL-2 is even offered. It does have some strong side effects. If you end up on Sutent, ask for advise from everyone here as you will need it. Good luck. Oh, my scans have come back clear for over 2 years and I have just past the five year mark with Stage IV. There is always HOPE.
I belong to an HMO named Kaiser Permanente and my doctor is great! He was very aggressive with his treatment and mirrored my approach to this challenge.
It may still be stage III but they are the experts and will let you know. I was stage IV and in the past several years, there has been no evidence of the disease. So stage IV doesn't mean what it used to mean. Yay for that! Good luck on your visit.
Thank you very much! Congratulations on your pasting the five year mark. Do you think the side effect of Sutent is bearable? It sounds intimidating to me.
I am on immune therapy. Nivolumab and Ipilimumab. Having INCREDIBLE results with no side effects. I am one of those lucky ones. I have posted my story so you can read it.
Anna, my first reaction to your post is get a second opinion from another oncologist, one who specializes in kidney cancer, preferably at a cancer hospital or center. I had a radical right nephrectomy in 2009, was Stage 3 after the surgery. I’ve been Stage 4 since 2011 and I’m still here. I have been on 3 different oral meds and immunotherapy, currently on my 3rd oral med which has been working for the last two years. The side effects can be difficult but it differs for everyone. I continued to work and live my life. I retired this year having reached normal retirement age. The advancements in treatment, the number of clinical trials being conducted in the nine years since my first diagnosis is encouraging. It’s a hard realization that we can’t go back to life before our diagnosis...but we go forward.
Thank you very much for your response. I went to MD Anderson at Houston, and consulted the doctor there. It seems that there is no treatment out there but Sutent at this stage. There will be more treatment choices once on stage 4 though. I'm very happy for you that the med works. Look forward to hearing more good news from you!
Thank you so much for responding. I'm going to MD Anderson next week. You are all giving me some good hope, and I'm trying to educate myself on drugs. Dont know my stage, but if it's in the lymph, it's probably Iv.
Wish you all the best. Looking forward to hearing good news from your visiting MD Anderson. Time flies so fast. I'm going to past the 1-year mark after the surgery and I'm feeling great. My doctor friend suggested me to exercise more. She believed running twice a week would help and I did it. I was such a lazy person before.
Md Anderson dr says we must remove lymph so I'm scheduled for surgery in a week. Mine is papillary a d he says it does not respond to drugs or radiation. Only thing that gets it is surgery. He gave me hope he could cure it. Been told that before and it seems to keep going.
Having surgery on Monday to remove the lymphs. He said he thought he could cure. Have heard that twice before and it keeps showing up but staying hopeful.
The side effects of the Sutent were initially not good at all. The first 6 months for me were horrible. I did it for the chance of living longer for my wife and son who was just 10 years old then. I would do everything over again even with the side effects because it worked for me. It does not work for everybody but as my doctor said. It has to work on someone, why not you? He also reminded me that the average of those statistics are just that, averages. It means people did worse and people did better than the average and it is different for every person. Why not you?
Yes. That’s what they tell my wife. My wife mRCC Stage 4 since August 2012. She lost her left kidney and it spread to 5 sites.
Has been on one and only one TKI drug, Votrient for #73 cycles (months). She was on the high dose of 800 mg until April 2018 from then on 600 mg. They cut her down because she is doing so well. It depends on the persons bodies response... She is the pride and joy of her oncology team. Once your on a TKI and it’s working it’s for the rest of life...CT Scan that was done on Friday 9-14-18. I had results Friday night. Cancer remains STABLE. On new protocol of Votrient 600 mg. daily (from 800 mg. daily). It looks like we will stay on the new protocol. Oncology appointment on 10-18-18. First thing he said. She is setting records in the medical community. He said that new protocol of Votrient is working. Goal is to stay on new protocol for 2 years. She will continue with monthly blood work and the next CT Scan will be April 2019.
I did Votirent less than a year, it was a different kind of side effects. I did not like that at all. They all have their own "new normal" side effects. New normal because that what is was for me. I have heard others use the same term.
I was stage IV and went through IL-s then Sutent for three years. It is now 5 1/2 years since stage IV and I am off meds and enjoying life. When they talk about time on a drug, it is the average. A person could be on the medication shorter than a year or much longer than a year. In high doses, Sutent was yucky to say the least. I was looking at the long term and took a shot. Not everyone is as lucky as me but there is ALWAYS HOPE. My doctor kept telling me; " someone has to be lucky, why not you?"
I was stage 3 when diagnosed in 2007.I have been on Sutent(it worked for a year) the side effects were tolerable! I am currently on my 6 th medicine . I would suggest a second opinion. There is immunotherapy(which has some rate of stopping Rv), and a mirage of drugs as evidenced by my experience. Side effects of every drug are individual, as well as the ability to stop progression.
As someone told me, you just have to keep being here until they find that surefire cure!
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