A decision to make re Stage 4 Treatment

The lung mets were found by a chest xray.  Are there any other mets?  Has your dad had a CT/PET scan?  I would want to know the extent of the metastasis.  I would want to know if the mets in the lungs could be removed surgically. 

I have also read that taking some drugs can make you not a candidate for some clinical trials.  Your dad hasn't had any drugs yet, so I think I would go with the clinical trial that you described. 

Good luck to you and your father.  I am sure some other people will pop on here to give their opinion.

thaxter said:

Nivolumab/Ipi trials are

Nivolumab/Ipi trials are reporting response rates at about twice that of the first line TKis. Not a done deal yet but I would jump on the trial if he qualifies medically.

are very infrequent if at all. I would take advantage of the trial first because if you do not then it will probably stop recruiting by the time you try surgery first etc.

You didn't fully describe the trial. Is it a 50/50 double blind trial? What is the other arm if so? (What is the Nivo/Iil being compared to?)

Has your father had a brain MRI and a nuclear bone scan for further staging information? (These are the most reliable tests that can find mets in the brain/bones. Before you make a decision you really would like to know the extent of the metastasis.)

You need this information plus you need to know if the tumors that are found with the scans are operable or can be radiated to know if those interventions are even possible. If they aren't, medication may be the only route and the drug trial may be your best choice. (I'm not saying surgery/radiation is the best choice if possible, but narrowing your options is a good start.) Also, if they have information about how responsive your particular mets are to the drugs, you need to know that (some medications don't pass the blood/brain barrier, some may not work well on bone mets, etc.). You never mentioned the diagnosis of the type of kidney cancer. Clear cell? Fuhrman grade? The pathology can be important too, because some cancer types don't respond.

If you're seeing a medical oncologist who specializes in RCC, they probably can guide you to the best choice. Get a second, even a third opinion. If you don't trust one opinion, 2-3 more can really help. I found 3 opinions helpful, because I started seeing a consensus. Also, the last 2 disagreed with the first opinion and it turned out the first doc, although well intentioned, was not an RCC specialist and he was just wrong. At least with more than one opinion, even if there is disagreement, that information can help you too. Ask each to explain why they suggest what they suggest.

Take people with you. Make a list of your questions. Take notes. It's easy to forget and the patient is often emotional/upset. I'd take someone that is reliable and perhaps a little removed from the situation that can help pay attention to the information and keep you on track. For example, I took one of my friends who is a psychologist with me to my appointments in addition to a relative.

Lots of advice. I hope I didn't overload you.

Best wishes,

Todd

Footstomper said:

Good advice

Surely in a trial the 'other arm' MUST be a placebo, otherwise there's no baseline.

 

The best advice from Todd is to make sure you take someone with you. Sometimes all you hear is "CANCER blah, blah, blah, blah...." So its good to have a second pair of ears listening

The other arm is only a placebo in the case of there being no other treatment. Otherwise the other arm (or arms, sometimes there could be more than 2 even), can be the current best known treatment. For example, if the standard of care is Sutent, a new drug might be compared to Sutent and neither group knows which drug they are getting.

It can get complicated. I don't understand all the ethics involved, but they can't give you less than the standard care (I don't think). What I'm saying is that giving a patient a placebo who has Stage IV RCC would be against ethical standards, unless there is no other treatment for their condition.

I had a good friend go with me that didn't speak great English (just one of the people that went). I hadn't expected him to be helpful at all. But after the meeting I was talking to my other friend and son about what the doctor said, and nobody remembered. Then the guy whose English wasn't great, pulled out his phone and said "Let's just listen to it again, then." Turned out he had recorded the whole thing on his phone! He turned out to be the most helpful person there! I'm not sure you can record without asking, but I'll bet the doc wouldn't mind you recording if you asked permission. 

Todd

sblairc said:

Surgical removal prolongs time before beginning meds

From what I understand if one has tumors at more than one site (e.g., lungs and liver) surgery is not usually an option. I think the idea is that if there have solitary or few mets in the same location and it's possible you should have surgery first.  The reason why is that eventually all these drugs lose their effectiveness. If achieveing NED is possible with surgery, then you gain time before being treated with meds that eventually stop working. So for this reason, it's a great option to have surgery from what I understand. 

Immunotherapy clincical trials are probably the exception to the general rule for solitary/few mets that can be surgicalliy removed and/or radiated. Nivolumab that Darron is talking about is immunotherapy. Not all types of renal cancer are considered good candidates for immunotherapy (yet, according to some doctors). So for some individuals, surgery is a way better option first if possible. 

I hope I explained that correctly. 

 

Our own Donna Lee had good results with surgery. Hard to say which way is better. I think they still don't know and probably won't know until they figure out how this stuff spreads.

They are doing some interesting work on genetic classification of kidney cancer where they may be able to tell what type genetic mutation you have and give a better prognosis for how much at risk you are. If you know the prognosis, it may help make a better decision about what to do.

Todd

tsd1983 said:

Trial going ahead

Hi All

My dad received the news this morning that he has been accepted into the Checkmate 214 trial (More info: https://clinicaltrials.gov/ct2/show/NCT02231749).

He has been randomised onto the trial drugs - Nivolumab Combined With Ipilimumab - and his treatment starts on Monday morning in Sydney.

Obviously we're pretty happy with this news. 

As part of all of this, we were also able to confirm that the cancer has not spread to the bones or brain which is obviously good news.

As it stands, the only obvious sign of sickness my father has is a cough, which is unfortunately getting worse and obviously caused by one of the mets in the lung. He has a rumbling sound in his chest, too.

I'll keep everyone updated on the trial.

Glad to hear your dad was accepted into the clinical trial and that there are no bone and brain mets. Hopefully the drug combo will put an end to the lung mets. Wishing you and your family the best.

tsd1983 said:

Trial going ahead

Hi All

My dad received the news this morning that he has been accepted into the Checkmate 214 trial (More info: https://clinicaltrials.gov/ct2/show/NCT02231749).

He has been randomised onto the trial drugs - Nivolumab Combined With Ipilimumab - and his treatment starts on Monday morning in Sydney.

Obviously we're pretty happy with this news. 

As part of all of this, we were also able to confirm that the cancer has not spread to the bones or brain which is obviously good news.

As it stands, the only obvious sign of sickness my father has is a cough, which is unfortunately getting worse and obviously caused by one of the mets in the lung. He has a rumbling sound in his chest, too.

I'll keep everyone updated on the trial.

Keep us posted on progress.

tsd1983 said:

An update

Hi All,

My dad has recently completed his third round of treatment on the Checkmate 214 Trial.

He is not due to get a scan on his chest for another month or so, to see if the mets in the lungs have grown or shrunk, but he has a nagging cough that simply won't go away and is often very bad, so they sent him for a chest x-ray last week. The x-ray showed no change in the mets.

My dad was reasonably fit and healthy prior to diagnosis and worked 10-12 hour days, so any side effects were always going to be noticeable. After the first round of treatment, he pretty much had no side effects at all. After the second and third rounds, he appears to now be very tired. It's not affecting him hugely at the moment but he's certainly sleeping longer than he ever has before.

He hasn't had any other serious side effects apart from a minor rash, and the cough - which is probably the worst thing at the moment as it's not only annoying for him, but a constant reminder of what's happening.

He still goes on 6km walks with me every third or fourth day - so he's doing well to be able to keep doing that

Just kicking in some positive feedback. Tired is good. Keep in mind that the combination is a immunotherapy. his body will be doing the heavy lifting killing off the cancer cells. My 1st scan in my trial showed in increase in tumor size, but it was because the tumor was swelling as I started to kill it off. Rest and a good balanced diet gi a long way.