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Renal cell cancer: Anyone else with this cancer?

Posted by w5wiggi @w5wiggi, Apr 22, 2018

renal cell cancer came back in 2015 operated on again to remove, now in 2018 its it is located in lung and other parts. I have been God blessed to have the staff at Mayo to carry me thru this.

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

jimchardy | @jimchardy | Nov 16, 2018
In reply to @jonathanwongso "Hi Guys, thank you so much for all the reply. I did my own research, and..." + (show)
@jonathanwongso

Hi Guys, thank you so much for all the reply.

I did my own research, and found 2 clinical trials that might have a better outcome which is:

– Javelin Renal 101 (phase 3 trial) Combining "Avelumab and Axitinib" By Dr Robert Motzer from Memorial Sloan Kettering Cancer Center, New York
this study might has a more promising result:
Objective response rate 55%
Progression free survival 13,8 months
However, I cannot find the Complete Response Rate (probably around 5% from another source)

– Keynote 426, Combining "Pembrolizumab and Axitinib" Randomized trials by Merck and Pfizer (Phase 3 trial On going). However the phase 1b trial shows that:
Objective Response rate 73%
Progression free survival 20 months
Complete Response rate 7%

Compared to the 2 options given by the Singapore Oncologist:
– Combination of "Ipilimumab + Nivolumab"
Objective response rate 43%
Progression free survival 11,8 months
Complete response rate 9%
Adverse event could be organs failure

– Sunitinib
Objective Response rate 27% ( in intermediate and poorer risk group)
Progression Free Survival 8,4 months
Complete Response Rate 1%

However, the avelumab axitinib and Pembrolizumab axitinib are not available in Indonesia or SIngapore as my nearest developed country. has anyone know about this trial or has anyone experience this trial?
i have told also that immunotherapy could have a fatal side effect. is that true?
immunotherapy cost is super expensive in singapore, or maybe considering i am indonesian a developing country. 1 USD is 15000 Indonesian rupiah. the cost of immunotherapy in SIngapore is more than USD100.000/ 4 injection.

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I was diagnosed with kidney cancer, metasticized to bone (left acetabulum) in June, 2013. My left kidney was immediately removed and left acetabulum was treated with radiation. I was shortly thereafter put on sunutinib, 1 tab per day for 28 days, then 14 days off. After a few months, I began having severe reactions to the sunutinib, so my oncologist reduced my prescription to one tab every other day for 28 days, 14 days off. In March, 2018, I began experiencing sore throat symptoms and my oncologist prescribed an antibiotic after a month, my sore throat had not gone away, so he prescribed another antibiotic round. In June I underwent a c/t scan and my kidney cancer had spread to my right lung. My oncologist stopped sunutinib and went to Opdivo infusions. After two treatments, another c/t scan showed the cancer in my lung had spread to both lungs, so he advised me to stop the Opdivo and prescribed Cabozantinib. Due to my anticipation that Opdivo would be effective, I was not certain I agreed with this, so I got a second opinion from OHSU in Portland, OR. While there, the oncologist from who I was getting the second opinion noticed my throat issue and referred me to a throat specialist who took a sample to have analized. The "sore throat" was actually squamous cell carcinoma, HPV, making it easier to cure. The decision among the three oncologists was to continue my treatment with Opdivo and radiate the squamous cell in my throat, a somewhat grueling experience. I am, just now, beginning the radiation treatments.

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jonathanwongso | @jonathanwongso | Nov 16, 2018
In reply to @w5wiggi "Thanks This will be my first time having a type of chemo, in the past its..." + (show)
@w5wiggi

Thanks
This will be my first time having a type of chemo, in the past its just been surgery to remove the cancer
I have found the chat line to be very helpful and encourging

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Hi Wiggi, may I ask what type of Chemo are you getting ? I'm currently opted with Immunotherapy as my father's treatment. But is Chemo can be use as well to treat Renal Cell Cancer? Can I have email or something to contact you? I really need help. Thanks a lot.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 17, 2018
In reply to @jonathanwongso "Hi Wiggi, may I ask what type of Chemo are you getting ? I'm currently opted..." + (show)
@jonathanwongso

Hi Wiggi, may I ask what type of Chemo are you getting ? I'm currently opted with Immunotherapy as my father's treatment. But is Chemo can be use as well to treat Renal Cell Cancer? Can I have email or something to contact you? I really need help. Thanks a lot.

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I am happy that you have found others who might have some information to share with you. We are so fortunate when we are able to 'connect' with others who share similar health issues and can receive and share support. If you ever want to share personal contact information, please know that it is not allowed, for your privacy and protection, on this public portion of Connect You can use the private message feature (envelope icon-top of page) to safely do this.
Hugs.

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