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

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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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@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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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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@colleenyoung

@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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Thank you for your reply. I find very few people on Sutent who are Stage 3 RCC. The disease is rare so I am not getting a lot of feed back. I also discovered there is one 1 study showing Sutent is helpful at all in a stage 3 RCC with not Mets. Sutent is not a popular drug. I have been reading differing literature. The New England Medical Journal has a recent article on Sutent and it says it isn’t effective for my stage RCC. My oncologist suggested I go on this drug. I am concerned. Why do on a drug with major side effects if it may not help me. This doctor is willing to put me on 37.5 mg instead of 50 mg but even at a lowered dose the side effects remain. I have work and take this drug. I don’t know if I will able to accomplish this. The drug is so toxic.

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@azkidney57

Thank you for your reply. I find very few people on Sutent who are Stage 3 RCC. The disease is rare so I am not getting a lot of feed back. I also discovered there is one 1 study showing Sutent is helpful at all in a stage 3 RCC with not Mets. Sutent is not a popular drug. I have been reading differing literature. The New England Medical Journal has a recent article on Sutent and it says it isn’t effective for my stage RCC. My oncologist suggested I go on this drug. I am concerned. Why do on a drug with major side effects if it may not help me. This doctor is willing to put me on 37.5 mg instead of 50 mg but even at a lowered dose the side effects remain. I have work and take this drug. I don’t know if I will able to accomplish this. The drug is so toxic.

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@azkidney57, you are asking your oncologist all the right questions. Have you shown the NEMJ about the article on Sutent and shared your concerns? It might be helpful if your oncologist could share with you stats of probability of effectiveness in your case. What might the probability of recurrence be if you don't take the drug. They won't be able to answer this precisely of course, but it sounds like you need and deserve more answers and understanding of how this impacts your life now as well as in the future.

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@azkidney57

Thank you for your reply. I find very few people on Sutent who are Stage 3 RCC. The disease is rare so I am not getting a lot of feed back. I also discovered there is one 1 study showing Sutent is helpful at all in a stage 3 RCC with not Mets. Sutent is not a popular drug. I have been reading differing literature. The New England Medical Journal has a recent article on Sutent and it says it isn’t effective for my stage RCC. My oncologist suggested I go on this drug. I am concerned. Why do on a drug with major side effects if it may not help me. This doctor is willing to put me on 37.5 mg instead of 50 mg but even at a lowered dose the side effects remain. I have work and take this drug. I don’t know if I will able to accomplish this. The drug is so toxic.

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@azkidney57, I am thinking about you. I hope all is going well for you.

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I am waiting for authorization for the Sutent I will be taking. This drug is so toxic I hope my side effects will allow me to work. These past 4 months have been very difficult for me. It is stressful to have had cancer, have to worry about recurrence and now I am dealing with a growing pile of bills. Financially this is also a “burden” I can’t pay all the hospital and doctor bills at once. There isn’t a day I don’t worry about everything. It is difficult to sleep. I am an edge all the time. I would like to keep working but the drug may have too many side effects. I just don’t know yet. My life has been turned upside down. I hope I make it.

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