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RCC mets to lungs at almost 2 yrs post nephrectomy

King08
Posts: 8
Joined: Oct 2013

I'm new to this site and here because I think the best place to gain information is from those who have gone through it, the person at hand is my amazing father who is,to say the least ,in total shock. He has been having 6 mon scans done since his football sized tumor was removed during a radical nephrectomy almost 2 years ago. He had clear scans 6 months ago and now has 7 spots bilateraly on his lungs! What kinds of treatment have you experiences, where do you recommend treatmrnt(he has an appt at mayo november 5) are there any non-med approaches you found to be helpful, and what are some survival lengths? I so appreciate any info you can give me!

angec's picture
angec
Posts: 707
Joined: Mar 2012

Hello, sorry to hear about the mets. This is the right place to be.  "Votrient" has proved to be a good drug, along with others. There are plenty of new targeted treatments available and they have reached a point where RCC is managed as a "chronic" disease.  I am sure others will chime in soon!  All my best!

King08
Posts: 8
Joined: Oct 2013

Thank you, there is a lot of scarey information on the internet, and this far it seema the prognosis is not good But I am hoping to hear and learn about some what actually people not studies have found to be successful!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

There are a few key bits of info mising...  mostly what was the pathology after the surgery..?  Most likely it was Clear Cell.. but..  more info to be shared here in order to give the best answer.  That said there are a host of drugs that can add many years to the life clock...

The internet is a good tool.. and some info is spot on. But keep in mind some of the info is very outdated, some is wrong, some will scare you and some give you lies...  that is a generalization but you need to think of it in that manner.

Oh and somehow try to find the inner strength to be gracious when friends and families tell  you about some miracle cure...  Standing on one foot upside down won't cure Cancer.

Ron

alice124's picture
alice124
Posts: 892
Joined: Mar 2012

King,

Your post brought back horrible memories for me googling the internet looking for answers when my husband was diagnosed with stage 4/grade 4 kidney cancer two years ago. Don't do that to yourself or you dad. Those frightening searches had me believing John had only months to live which obviously is highly inaccurate since he is very much alive today. The information you pull up on the internet is dated and not pertinent to today's treatments for the most part.

John, my husband and one putt on this site, had a 7.5 cm tumor on his kidney with numerous lung nodules, tumor activity in his pelvic region, and a should met. He had a right nephrectomy on November 1, 2011, and then began IL-2 treatment the beginning of 2012. The IL-2 treatment provided a mixed response with some tumors growing in size and some shrinking, but, bottom line,  there was not enough positive response for him to continue the IL-2. He then was able to join a Nivolumab/Votrient trial at Hopkins which he has been on since May 10, 2012. It requires him to take Votrient daily and receive Nivolumab infusions every three weeks and to date has produced a 58% reduction in his tumor burden.

He is treated at Hopkins by a wonderful oncologist, Dr. Hans Hammers. I don't think your dad could go wrong at Mayo. Just meet with the doctor and listen to what he has to say and ask questions. I don't think any good oncologist will give you a survival time in this environment. There are so many advances currently being made in this treatment I'll repeat what Dr. Hammers has said to John on numerous occasions. "If you had to get kidney cancer, you picked a good time to get it." Ten years ago you wouldn't have had nearly the options you have today.

 

 

 

 

Darron
Posts: 254
Joined: Jun 2013

All of the above comments are spot on. I had 17 (seventeen)cm clear cell tumor removed with right adrenal in October 2012. I am on the same Nivolumab trial that John is on, but I had been taking Sutent vs. votrient. It was for two lung mets and a tumor in my left adrenal gland (3.8 cm).

my last scan on 10-10-13 showed swelling, scar, or trace of cancer in my adrenal. No signs of lung mets.

talk to the doctor, it is cloudy out, but the sky isn't falling.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Hi, Sorry to hear bout your dads relapse.

As for the lung mets. 7 are most likely not surgically removeable (unless they are situated close to eachother in clusters). However, as surgical treatment of lung mets holds quite good (compared to other treatments) long term survival rates, be absolutely sure that your dad isnt a rare case where surgery *is* an option even though its not a solitary met. In other words, make sure a thorasic surgeon with expertise in this field has seen his file (just in case).

Treatment option beyond the above (which is curatively intended):

As for a curatively intended treatment the only other option is immunotherapy or immunotherapy combined with follow-up surgery.

The other option is life-prolonging treatments for which there is a variety of options out there. What would suit your dads case best you need to take up with his oncologist (if he ends on that track). There has been a lot of improvements the last 5-10 years in this area. Predicting survial is always a guess as this cancer is very unpredictable, especially when it metastasizes. The grim truth is anywhere from 6 months to 5+ years and that both numbers are viable guesses...

/G

parul
Posts: 24
Joined: Dec 2013

Dear All ,

My dad is 54 and is diogionous with TCC cancer having lump nodes in kidney liver and neck .

Doctor sugested chemo gemcitabine plus cisplatin 1.6 gm. for 2 days and the for day 3,4,5 inj Ancount 300 Mcg. Is this the right way for such a cancer or .. its better to have the kideny removed once and for all which seems to be the primay source. Although the tumer is only 1.2 cm only in the Bladder and liver 4.2 cm and neck 2 cm ..

he sugested 3 rounds of this treatemnt and will see the progress .

Please advise.. is this the right treatment of its better to have the kidney removed first then ..can do ..chemo ??.. how much is is survival rate in this thype of cancers.

Please .. sugget some time I have to admithim tommrow or day after.

Thanks

Parul

icemantoo's picture
icemantoo
Posts: 1796
Joined: Jan 2010

Parul,

 

There are a number of survivors on this board where the Cancer has metastsized and the doctors are starting with drugs rather than remove the Kidney first. It is well above my paygrade to suggest that one course or the other is best for your dad. To the extent that you and your dad are given a choice try and ask as many questions as you can. The doctors giving you these choices generally have a lot of insight as to which is the best course and it may be that there is no clear choice of one being better than the other, but there are deffinately pros and cons to each approach which you should discuss with the doctors.

 

Whatever you choose hopefully will have the best outcome.

 

Icemantoo

parul
Posts: 24
Joined: Dec 2013

Hi Icemantoo,

 

thanks for your prompt reply .. I am really confused with what .. the doc say .they say one can live up to 5 yrs .. only. I have raed about ppl living for ages once they remove the kideny even if the cancer is metasized .. to liver and lung. TCC its called .

 

My worry is they have asked us only chem of 3 rounds and that it.

Will Love to hear from you . tahnks for all your support

Thansk

Parul

icemantoo's picture
icemantoo
Posts: 1796
Joined: Jan 2010

Parul,

 

As a result of new medicines and treatments the actual outcomes are often better than the statistics. There are a number of Stage 4 survivors on this board living well past the experation date that had been given to them. As for specifics on your father's case you are going to have to discuss that with his doctors.

 

Icemantoo

parul
Posts: 24
Joined: Dec 2013

Thanks Icemantoo,

 

I hope my dad respondes to the treatment prpoerly .. chemo thy given Gemcitabine and cisplatin chemotherapy..from tommrow onwards ..

 

Also just curious to know u r a cancer surviver  for metasis cancer.. ?? Please share your story with me i will feel a bit better i am devasted completely ...

 

Thanks 

Parul 

 

NanoSecond's picture
NanoSecond
Posts: 643
Joined: Oct 2012

Parul,

Sorry I only have a second to respond here.

Please - right away - register at: www.smartpatients.com and post your question there with as much detail as you can.

The chemo being proposed is NOT standard for most renal cancers. 

It is vital you get more info.

parul
Posts: 24
Joined: Dec 2013

Thanks nano

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