Sutent for renal cell carcinoma: What are the side effects?

Posted by azkidney57 @azkidney57, Jul 16, 2019

I may be put on Sutent. I had a nephrectomy for a clear cell renal carcinoma this May. What are the side effects? I am cancer free right now but my doctor is concerned about micro metastasis

Hi @azkidney57, welcome to Connect. I added your message to the Cancer group as well as the Kidney group.

According to the American Cancer Society (https://www.cancer.org/cancer/kidney-cancer/treating/targeted-therapy.html), sunitinib (Sutent) can be used after surgery is done to remove the cancer, to help lower the risk that the cancer will come back. This is known as adjuvant therapy.

The drug does have a long list of potential side effects https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/sunitinib I might ask your oncology nurse about them and if there are ways to reduce some of them.

I'd like to also bring @tara58 @jonathanwongso @jimchardy and @jls77 into this discussion so they can share their experiences with sunitinib.

AZKidney, when will you start Sutent?

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Thank you for responding. I am starting Sutent next week.

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I am very nervous because of the side effects but I will take it anyway. I have no cancer now the kidney was removed. My doctor told me of the 5 most common side effects. I guess I have to weigh the benefit with the risk. My doc who is an oncologist also said I could just be watched. But I don’t want cancer to show up somewhere else. I had always been healthy so all this is new to me.

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@azkidney57 This sounds scary. I am sorry it's happening to you. I have been in a lot of medical situations where I don't understand all of the choices and it is really tough. I hope you are leaning on your care team, family and friends to help you get through all of this. Our online community is also here to make sure you are not alone. What more have learned about your condition?

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@azkidney57

I am very nervous because of the side effects but I will take it anyway. I have no cancer now the kidney was removed. My doctor told me of the 5 most common side effects. I guess I have to weigh the benefit with the risk. My doc who is an oncologist also said I could just be watched. But I don’t want cancer to show up somewhere else. I had always been healthy so all this is new to me.

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Being scared is a pretty natural emotion under these circumstances. I know. I walked into the ER five years ago at age 69 after never being admitted to a hospital in my life. I came out six weeks later with a cancer diagnosis and kidney failure. In addition to having a wonderful family, two things helped me get over it. First, I was in a large regional hospital. The doctors were nice, but they were not the best in the country. I went to the top cancer center in the country for a second opinion. That probably saved my life. Second, while I depended on my care team I read and studied all that I could about my disease so that I understood the facts about my condition. I learned that all doctors are not created equal and convinced myself that I was getting the best treatment available (because I knew about my disease and had a real expert on my team). I became my own advocate and it worked.

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@jolinda

@azkidney57 This sounds scary. I am sorry it's happening to you. I have been in a lot of medical situations where I don't understand all of the choices and it is really tough. I hope you are leaning on your care team, family and friends to help you get through all of this. Our online community is also here to make sure you are not alone. What more have learned about your condition?

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So I had the nephrectomy in May 2019. I was sick for 2 months. I thought it was a kidney stone. I did have a stone but also a mass. I will never forget when the emergency room doctor told me I had a large mass in my kidney. It was so unreal! So now I am told the Sutent may work to prevent Mets but there are no quarentees.

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@azkidney57

So I had the nephrectomy in May 2019. I was sick for 2 months. I thought it was a kidney stone. I did have a stone but also a mass. I will never forget when the emergency room doctor told me I had a large mass in my kidney. It was so unreal! So now I am told the Sutent may work to prevent Mets but there are no quarentees.

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The sutent has many side effects. I may or may not have a bad reaction no one knows. I am given percentages of how other people have reacted to this drug. It’s the best drug for my type of cancer I am told. I have to pay a co pay of course I don’t know how much. My insurance does cover it so I am lucky in that respect. Cancer is costly. The treatment had side effects and my be ineffective. I feel very depressed. I know right now I have no cancer but all that can change no one knows. But I guess that is just life. Right now I feel a bit afraid that nothing will work and I will suffer then die.

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I will be starting Sutent soon and it has so many side effects! I work full time. Is there anyone who has taken this drug? They are using Sutent to prevent Mets in my case. I had a RCC. Nephrectomy May 2019. I have no cancer at present. I just hope the Sutent doesn’t cause major health issues! The Sutent will cost me around $300 a month for 30 capsules. Not only is it toxic it is also expensive. Also, there is no quarentee the medication will work. I feel discouraged. But I will take it because that is what my oncologist thinks is best for me. Cancer is devastating physically, emotionally, and financially. Each time I see a doctor I pay a co pay and they add up because I have multiple appointments. I feel like I am living a nightmare! I know others suffer as well. I just hope I can keep working.

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Hi @azkidney57 you may have noticed I moved your post to this existing discussion you took part in so that all your post will be in one place. Simply click VIEW & REPLY in your email notification to get to your post.

When will you be starting? What will your dosage be?

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@azkidney57

Are there any women that have taken Sutent for renal cell carcinoma out there? I will be starting this toxic drug and I am concerned about the side effects. I work full time. I may lose my hair or it could turn white or grey. I am a woman this fucking cancer is going to effect my body image. Also, will I end up with chemo brain? The cancer people I see don’t know how this drug will effect me. I am very distressed. I am a care giver for my mom. I don’t want this to destroy my life. I hope I will have enough energy to walk my dog. It is 2 am and I can’t sleep.

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@azkidney57, I don't have cancer and I am not familiar with this drug or treatment plan, however, I can understand your fear and questioning of the unknown future. I do have a liver and a kidney transplant, and I have faced the very real possibility of my own unknown furute. I believe that there come a time when we have to weigh risk vs benefits. No one can predict how one might react compared to another as we are each different in how our body reacts.

You are not alone in your thinking – no one of us wants to endure serious health and treatments. We, the patient, can help ourselves by educating ourselves and building a working relationship with our care team. Also, we have to learn to accept that things are going to be different for now, and make preparations for any possible changes. We must be open to asking for, and accepting help from others. My strongest personal belief is to focus on the positives while living one day at a time.

Have your doctors indicated whether they can treat the worrisome side effecte if/when they occur?
Do you have help in caring for your mom?

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I will be starting Sutent in late August 3 weeks or so. I will be started on recommended dose 50 if side effects too severe then put you on half the dose. The drug is toxic. I have no cancer right now. No Mets. I may choose surveillance. I work full time in a hospital. This is very distressing for me. Cancer doesn’t run in my family. I feel very isolated in terms of this major decision I have to make. I have some support but it is still a very difficult choose to make risking cancer versus taking toxic drugs which will effect quality of life. I am a woman I may lose my hair. My pigmentation may change. Then there is the nausea,diarrhea, extreme fatigue, neuropathy, hypertension etc I may have. I am very depressed.

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@azkidney57

I will be starting Sutent in late August 3 weeks or so. I will be started on recommended dose 50 if side effects too severe then put you on half the dose. The drug is toxic. I have no cancer right now. No Mets. I may choose surveillance. I work full time in a hospital. This is very distressing for me. Cancer doesn’t run in my family. I feel very isolated in terms of this major decision I have to make. I have some support but it is still a very difficult choose to make risking cancer versus taking toxic drugs which will effect quality of life. I am a woman I may lose my hair. My pigmentation may change. Then there is the nausea,diarrhea, extreme fatigue, neuropathy, hypertension etc I may have. I am very depressed.

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Hello @azkidney57,

I can certainly understand your many concerns about this diagnosis as well as the possible side-effects of the Sutent treatment. Has your doctor said if you can start with a dose lower (than 50) and then work up if you are OK with the lower dose? Also, have you considered a second opinion at a cancer center with a good reputation for treating this type of cancer?

If you choose surveillance, how often will your doctor follow up? Will it be with CT scans?

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Are there any women that have taken Sutent for renal cell carcinoma out there? I will be starting this toxic drug and I am concerned about the side effects. I work full time. I may lose my hair or it could turn white or grey. I am a woman this fucking cancer is going to effect my body image. Also, will I end up with chemo brain? The cancer people I see don’t know how this drug will effect me. I am very distressed. I am a care giver for my mom. I don’t want this to destroy my life. I hope I will have enough energy to walk my dog. It is 2 am and I can’t sleep.

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@azkidney57

Are there any women that have taken Sutent for renal cell carcinoma out there? I will be starting this toxic drug and I am concerned about the side effects. I work full time. I may lose my hair or it could turn white or grey. I am a woman this fucking cancer is going to effect my body image. Also, will I end up with chemo brain? The cancer people I see don’t know how this drug will effect me. I am very distressed. I am a care giver for my mom. I don’t want this to destroy my life. I hope I will have enough energy to walk my dog. It is 2 am and I can’t sleep.

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@azkidney57 Did you decide to start Sutent next week or to opt for surveillance? How are you doing?

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@azkidney57

Are there any women that have taken Sutent for renal cell carcinoma out there? I will be starting this toxic drug and I am concerned about the side effects. I work full time. I may lose my hair or it could turn white or grey. I am a woman this fucking cancer is going to effect my body image. Also, will I end up with chemo brain? The cancer people I see don’t know how this drug will effect me. I am very distressed. I am a care giver for my mom. I don’t want this to destroy my life. I hope I will have enough energy to walk my dog. It is 2 am and I can’t sleep.

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@azkidney57, you asked to meet other women who have experience with kidney cancer. Please meet @darlia and @trishanna. I’m not sure if either of them have had treatment with Sutent, but they can definitely understand the apprehension of starting a new treatment and being worried about side effects and changes to body image.

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