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w5wiggi
@w5wiggi

Posts: 3
Joined: Apr 22, 2018

renal cell cancer , kidney removed right side 2013, came back in 2015

Posted by @w5wiggi, Sun, Apr 22 2:39pm

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.

REPLY

Hello @w5wiggi, welcome to Connect and thank you for sharing a bit about yourself. If you don't mind me asking, and if you are comfortable sharing, you had renal cancer in your kidney and had it removed, but recently were diagnosed with cancer in your lungs? I apologize if I misinterpreted you.

Welcome to connect! I agree it is a God send to have the amazing and brilliant Mayo Teams giving
us us the best quality of life possible. I am a ten year lung cancer survivor and have been fortunate
to have such outstanding care and support. You are brave to share your story, and I feel you will help others by doing so. Connect is a very caring
community and ColleenYoung is as compassionate as she is brilliant. Again, Welcome;-)

Yes they state that it has travel to my lungs thru the blood
The was going to cut some of the lung out but instead did some type of camera guided surgery to the lung and took out samples and found that surgery was not an options this time as in the past

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

Hi @w5wiggi
I wanted to let you know about this other discussion on Connect about kidney cancer where you'll meet @oldirish1 whose cancer has also spread to the lungs. You'll also read about @trishanna @darlia and @gaybinator.

Wiggi, What chemo will you be getting? Or have you already started? How are you doing?

@colleenyoung

Hi @w5wiggi
I wanted to let you know about this other discussion on Connect about kidney cancer where you'll meet @oldirish1 whose cancer has also spread to the lungs. You'll also read about @trishanna @darlia and @gaybinator.

Wiggi, What chemo will you be getting? Or have you already started? How are you doing?

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I had lung surgery in January where they removed part of my right lung. I just had a cat scan and was told that they detected no cancer. I am not on any treatments right now, and will get another cat scan in July. Sorry to hear that they could not remove the cancer in your lungs. I hope the chemo will work for you. Good luck

@jonathanwongso

Hi my name is Jonathan Wongso from Indonesia.

My father, Ekwandi Wongso Wong, 52 years old, diagnosed with a 8 cm Kidney Cancer on ther right Kidney on May 2018. He had the Right Kidney removed immediately and did a biopsy.

The Biopsy report stated that it was a "Clear Cell Renal Cell Carcinoma" WHO Grade 3, limited to Kidney, Pathological Stage pT2aNX, Resection margin Clear. We were informed that there was no spreading.
Surgery was done in Mount Elizabeth Hospital Singapore.

On 30 July 2018, We did a 3 months Checkup, CT Thorax found that there were 0,8cm pulmonary nodule at the right lung apex, near the right brachiocephalic vein, abutting against superior vena cava. It was discovered later that the nodule was there on 3 may, but the radiologist didn't notice that time.
And also 0,5cm nodule on the left lower lobe.
However, the urologist told us no need to see an oncologist and ask my dad to do another scan in 3 months time.

On 7 November 2018, we did another check UP.
My dad had a CT Thorax and Abdomen. The 0,8cm pulmonary nodule has grown larger to 1cm. There is another 1cm New nodules on the right apex. There were also a few small nodule less than 3mm on the right and left lungs.
We were told that my dad has a stage 4 kidney cancer, metastasis to lungs.

We consult to oncologist, we were told there are two option.
1. Targeted therapy (Sutent or Pazopanib)
2. Immunotherapy (Ipilimumab + Nivolumab)

The oncologist from National University Hospital Singapore told us Immunotherapy (combination of Ipilimumab + Nivolumab) has the best result compared to to targeted therapy.

I also heard about Dendritic cell combined with Natural Killer Cell Immunotherapy can be used to treat kidney cancer also.

I want to ask whether is there a "Second Opinion" or a "Better Alternative" to treat My Dad's Case?

I Really Hope to hearing from you guys soon.
Thank you so much

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@jonathanwongso I'm so sorry to hear about your dad. I wish I could answer your questions but the Mayo's websites are excellent and you might find good information on one of them.

Hi my name is Jonathan Wongso from Indonesia.

My father, Ekwandi Wongso Wong, 52 years old, diagnosed with a 8 cm Kidney Cancer on ther right Kidney on May 2018. He had the Right Kidney removed immediately and did a biopsy.

The Biopsy report stated that it was a "Clear Cell Renal Cell Carcinoma" WHO Grade 3, limited to Kidney, Pathological Stage pT2aNX, Resection margin Clear. We were informed that there was no spreading.
Surgery was done in Mount Elizabeth Hospital Singapore.

On 30 July 2018, We did a 3 months Checkup, CT Thorax found that there were 0,8cm pulmonary nodule at the right lung apex, near the right brachiocephalic vein, abutting against superior vena cava. It was discovered later that the nodule was there on 3 may, but the radiologist didn't notice that time.
And also 0,5cm nodule on the left lower lobe.
However, the urologist told us no need to see an oncologist and ask my dad to do another scan in 3 months time.

On 7 November 2018, we did another check UP.
My dad had a CT Thorax and Abdomen. The 0,8cm pulmonary nodule has grown larger to 1cm. There is another 1cm New nodules on the right apex. There were also a few small nodule less than 3mm on the right and left lungs.
We were told that my dad has a stage 4 kidney cancer, metastasis to lungs.

We consult to oncologist, we were told there are two option.
1. Targeted therapy (Sutent or Pazopanib)
2. Immunotherapy (Ipilimumab + Nivolumab)

The oncologist from National University Hospital Singapore told us Immunotherapy (combination of Ipilimumab + Nivolumab) has the best result compared to to targeted therapy.

I also heard about Dendritic cell combined with Natural Killer Cell Immunotherapy can be used to treat kidney cancer also.

I want to ask whether is there a "Second Opinion" or a "Better Alternative" to treat My Dad's Case?

I Really Hope to hearing from you guys soon.
Thank you so much

Hello @jonathanwongso,

I’m so sorry to learn about your father; I wanted to let you know that I moved your discussion to the Cancer group and combined it with this existing discussion so that you can meet other members who have discussed kidney cancer which has spread to the lungs.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

First, I’m tagging @oldirish1 @trishanna @darlia @granny50846 @jewels5 @pdnorm @charlie1947 and Mentor @rosemarya, as I’m certain they will join in with their thoughts and insights.

It seems that your father's oncologist is moving in the right direction with regard to treatment options – you can read about new drug therapies used for advanced kidney cancer (immunotherapy and targeted therapies) here:
https://www.mayoclinic.org/diseases-conditions/kidney-cancer/diagnosis-treatment/drc-20352669vvvv

Mayo Clinic is an international leader in innovation and research on surgical and nonsurgical management of kidney cancer and tumors, improving the chances of cure, extending survival for kidney cancer patients who can't be cured and offering improved quality of life for patients worldwide.
At Mayo Clinic, experienced specialists — including urology, medical oncology, radiation oncology, radiology and pathology — work as a team to provide personalized care for people with kidney cancer.

If you would like to make an appointment at Mayo Clinic to get a second opinion, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

International patients can request an appointment at any Mayo Clinic location online, here: http://www.mayoclinic.org/departments-centers/international/appointments
Mayo Clinic representatives will ask questions to help direct you to the best specialist.

@jonathanwongso, I can only imagine your worry and anxiety, and I’m so glad you reached out to the Mayo Clinic Connect community. I wish you and your family the very best. Will you please keep me updated with any questions or changes to your father’s condition?

Liked by kamama94

@jonathanwongso

Hi my name is Jonathan Wongso from Indonesia.

My father, Ekwandi Wongso Wong, 52 years old, diagnosed with a 8 cm Kidney Cancer on ther right Kidney on May 2018. He had the Right Kidney removed immediately and did a biopsy.

The Biopsy report stated that it was a "Clear Cell Renal Cell Carcinoma" WHO Grade 3, limited to Kidney, Pathological Stage pT2aNX, Resection margin Clear. We were informed that there was no spreading.
Surgery was done in Mount Elizabeth Hospital Singapore.

On 30 July 2018, We did a 3 months Checkup, CT Thorax found that there were 0,8cm pulmonary nodule at the right lung apex, near the right brachiocephalic vein, abutting against superior vena cava. It was discovered later that the nodule was there on 3 may, but the radiologist didn't notice that time.
And also 0,5cm nodule on the left lower lobe.
However, the urologist told us no need to see an oncologist and ask my dad to do another scan in 3 months time.

On 7 November 2018, we did another check UP.
My dad had a CT Thorax and Abdomen. The 0,8cm pulmonary nodule has grown larger to 1cm. There is another 1cm New nodules on the right apex. There were also a few small nodule less than 3mm on the right and left lungs.
We were told that my dad has a stage 4 kidney cancer, metastasis to lungs.

We consult to oncologist, we were told there are two option.
1. Targeted therapy (Sutent or Pazopanib)
2. Immunotherapy (Ipilimumab + Nivolumab)

The oncologist from National University Hospital Singapore told us Immunotherapy (combination of Ipilimumab + Nivolumab) has the best result compared to to targeted therapy.

I also heard about Dendritic cell combined with Natural Killer Cell Immunotherapy can be used to treat kidney cancer also.

I want to ask whether is there a "Second Opinion" or a "Better Alternative" to treat My Dad's Case?

I Really Hope to hearing from you guys soon.
Thank you so much

Jump to this post

@jonathanwongso, I am sorry to hear about what your father is experiencing. I am a kidney transplant recipient, and I have no experience or answers that I can offer to you.
You asked whether there is a second opinion or better alternative for your dad's case. I believe that a second opinion is always appropriate when there is a complex or complicated health issue. Highly skilled specialists are going to be the best source for your answers about your father's condition and treatment options.
I wish I had some information to share with you. I hope for the best possible outcome for your father.

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.

@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.

Jump to this post

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.

@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

Jump to this post

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.

@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.

Jump to this post

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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