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A decision to make re Stage 4 Treatment

tsd1983
Posts: 8
Joined: May 2015

Hi All,

I'll preface this by saying I'm based in Sydney, Australia.

My father was diagnosed with Stage 4 RCC in December 2014. We've been on a roller coaster ride since then! He had surgery just before Christmas to remove his right kidney. The surgery itself was a success - the tumour itself was very large (I don't have the exact reports in front of me).

Upon follow-up, a chest x-ray revealed mets in the lungs (2-3). He's had a significant cough in the last 6 weeks or so which is obviously adding to the worry.

Currently our family has two treatment options and we're obviously trying to seek as much information as possible on which to choose.

The first is the oral pill, I am not sure which one exactly - I presume Sunitinib or something similar.

The second is participation (if accepted) in a trial "Checkmate 214" which is at Phase 3 and relates to the study of Nivolumab combined with Ipilmumab. The doctors are obviously pushing us towards the trial, but my father is very much 50/50.

Any advice?

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

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.

GailN
Posts: 14
Joined: Dec 2013

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.

mrupe
Posts: 5
Joined: Jul 2015

You say better results with Niv/lpi trail. I've been looking for data but haven't found any. Do you have a source?

 

Thanks

 

Mark Rupe

mrupe1965@gmail.com

a_oaklee
Posts: 523
Joined: Nov 2013

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.

Blueraidermike
Posts: 25
Joined: May 2013

You may want to consider surgery, VATS is a non invasive way to remove spots in the lungs.   Of course location is critial.    But the best step when dealing with limited disease is to cut it out if it can bring him to NED. 

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Being a Nivolumab/Sutent phase I trial patient, I have to strongly disagree With your cut it out mentality.

Pleaae take a second to read my bio if you are offered a chance to take Nivo/Ipi phase III.

My belief is that if you can knock out small mets without surgery, do it! The Sutent arm of the Nivo trial had a similar success profile as the Ipi arm, but had many more patients with side effects. We still do not know how durable my response is, and I continue to take Sutent, but I bet my life on the trial and the returns have been phenomenal.

Nivo-Sutent knocoed out a 3.4 cm adrenal tumor, and multiple lung mets. All were operable, but the only scars I have are from my original radical surgery. Additionally, I have the hope that I have also killed off any lingering mets that were not visible yet in scans.

contact me directly if you want more info.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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. 

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

tsd1983
Posts: 8
Joined: May 2015

The sutent tablets are the other arm, not a placebo. 

He has decided to go for the trial and will find out on Monday if he has been selected or not.

He has just gone through bone and brain scans to make sure everything else is OK in that regard

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Nivolumab is a good drug. I hope he gets it. Awesome. 

tsd1983
Posts: 8
Joined: May 2015

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.

APny's picture
APny
Posts: 1984
Joined: Mar 2014

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.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Hope the trial goes well for your dad 

GailN
Posts: 14
Joined: Dec 2013

Keep us posted on progress.

tsd1983
Posts: 8
Joined: May 2015

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

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

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.

 

tsd1983
Posts: 8
Joined: May 2015

Hi All

Just thought I would provide an update for those interested.

My Dad had his 3 month scan today after starting the Checkmate 214 trial. Unfortunately the trial is not working and he has been taken off the trial today.
The Mets he had in the lungs have either stayed the same or grown, and the cancer has now spread to the liver.

He will start on sutent tomorrow.

We are praying and hoping that the sutent works... otherwise we may sadly be heading towards the end of what has been a relatively short journey with Stage 4 RCC.]

Hopefully the Checkmate 214 trial works for others.

Troy

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I HOPE THE SUTENT WORKS fOR YOU.

Buy moist toilettes

tsd1983
Posts: 8
Joined: May 2015

Hi All

Just thought I would provide a bit of an update for you alll on my Dad here in Sydney, Australia.

My dad continues on the Sutent and hasn't really had any major side effects at the moment.

In recent weeks, his cough was becoming worse and he was really struggling to get his breath. Even brushing his teeth or putting on a shirt would cause breathlessness.

We indeed started to fear the worst - but after seeing a lung specialist, it was determined that a met in the lung was blocking his airways. The lung specialist decided to operate, and yesterday removed the offending met.

My Dad came out of the operation well and is feeling fantastic (well, as fantastic as he can at the moment). He has no shortness of breath at all and his cough is a lot better. He feels much more confident and the positivity he had at the start of this journey has returned.

The hope now is that the sutent works, and we start to see some positive results.

My fiance and I are getting marriedi n 11 weeks and he is determined to be there.

APny's picture
APny
Posts: 1984
Joined: Mar 2014

So glad to hear this and that your dad is doing well. Congratulations on your upcoming wedding and I'm sure from the sound of things that your dad will be there.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am so glad that they could relieve your dad's symptoms and hoping the sutent works great for him. I am sure he will enjoy your wedding too!

Hugs

Jojo

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I really appreciate the periodic updates. I'm glad they were able to help his breathing by removing this met.

Best of luck on the new drug.

Todd

grafer
Posts: 20
Joined: Aug 2015

Hi

Just wondering how yr dad is going on the Sutent ? Any good scan results ???

I am in Brisbane and am currently on the Checkmate 214 trial - started in May on the nivo / Ipi combination - now on the nivo alone.

regards

 

tsd1983
Posts: 8
Joined: May 2015

Hi All

It has been a while since I have provided an update on my Dad so I thought I'd do so now (including for you grafer).

As I said previously, unfortunately the Checkmate 214 trial did not deliver great results and saw the cancer rapidly spread to the liver and become more prolific in the lungs. My dad then moved onto sutent.

I mentioned last time I think that my dad had some breathing issues, whcih were fixed by some surgery involving a laser. He then had some radiotherapy as not all of this particular tumour could be removed by the laser.

Unfortunately, his shortness of breath returned and last week we were expecting the worst when getting the first three month scan results from the sutent as my dad had become quite weak and was struggling to do even the smallest of things.

However, we had some pleasant results. Certainly not out of the woods, but the good news is that sutent is showing signs of working. There has been no growth to any tumours. His oncologist is impressed by this as the cancer had previously been growing rapidly.

Both the mets in the lugs and liver have gotten slightly smaller or stayed the same.

They couldn't find a reason for the shortness of breath, so they decided to put him in for day surgery to flush out his lungs. He believes he now feels about 50% better in terms of breathing. The doctors also believe the side-effects from the radiotherapy may be causing the shortness of breath.

In short, we have a little bit of hope again.

My fiance and I are getting married next Friday and after a rocky road, it looks like my Dad will make it - which was one of his big goals.

Troy

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Troy,

Thinking about you and your family.

Have a wonderful wedding!

Hugs

Jojo

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Hi, I was recently (well, September 1, 2016) diagnosed with a mass on my left kidney that turned out to be stage 4 RCC. My kidney and large (football sized) tumor were removed on September 22nd, which I thought was quite a bit of wasted time between diagnosis and surgery.

Prior to and following the nephrectomy, I experienced, and reported to my docs, that I was having an increasingly awkward gait and numbness in my legs.

I was sent home following the nephrectomy, and quickly lost leg and bladder function (urine retention). I was re-admitted to the hospital on Oct. 1, after my urologist took a second look at the CT scan that had identified my giant kidney tumor. He and a radiologist he called in found additional, metastatic tumors, including, I believe, the one that was compressing my spinal cord and that took out my legs.

The hospital ordered an MRI the next morning and performed emergency surgery to resect a T6/T7 spine tumor, that afternoon, to de-compress my spinal cord. I've been in recovery and rehabilitation since regaining some function in my legs. My final radiation therapy (10 total) for that T6/T7 tumor is today.

As of yet, nobody has really talked to me regarding my other mets, all bone mets including the one in my hip that is threatening to negate all of my rehabilitation work to get my walking abilitiy back (with a walker).

My appointment with the medical oncologist to even DISCUSS chemotherapy isn't for another 10 days. I'm getting discouraged. I want to fight this but feel like I'm being slow-rolled for palliative care only, with what appears to be a very aggressive cancer. I'm only 50, and I'm strong, and I really feel like I've got more left in me than the 15 months I'm reading everywhere for stage 4 RCC patients with multiple bone mets.

How is the sunitinib working with your dad. I am going to call the doctor today and ask to immediately start SOME sort of treatment and from what I've read, that's the right call.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

"I really feel like I've got more left in me than the 15 months I'm reading everywhere for stage 4 RCC patients with multiple bone mets."

I'M STAGE 4 GRADE 4 with lung Mets and have been since May 2003

There are other people here who have had it for longer and a lot harder than I. Stats on the internet are massively out of date and often insane. IGNORE THEM.

EVERYTHING IS CHANGING SO FAST that this disease, even at our stage, is turning from a terminal disease to a chronic treatable disease. So there is hope. Dont give up.15 months is nonsense.

Sometimes you do have to wait a little to get quality treatment. But as you say, you're 50, you're strong. Dont get discouraged, you've recieved a shocking diagnosis, but I think your prognosis is way out of date and a lot worse than it really is. 

Stay on this board and you'll find that its not as bad as you think.

Good luck and stay in touch.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

That's a good assessment and excellent advice from Footstomper. 
Hang in there!

tsd1983
Posts: 8
Joined: May 2015

I haven't written here for some time. I would often tell my Dad about this forum and bits and pieces I'd read on it, so I wanted to pass on an update.

On September 1 this year, my Dad was told by his doctors that there was nothing more they could do. He was given three months to live.

Dad passed away on September 24, 2016.

In the end he survived a little under two years from diagnosis. There's probably things we would have done differently, but with hindsight, I think we'd all say that. He fought an amazing fight and we were extremely proud of the way he remained so positive and strong through this battle.

In the end the sutent failed, and another drug he was put on also failed. 

He wasn't one of the lucky ones, but there's plenty out there who are so if anyone is reading this, don't give up. 

We found a lot of the information on the Internet contradicted doctors' views etc, so it's always good to get  well-rounded view and realise that each case is different.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm sorry for your loss. Dads are special.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

TSD, so sorry to hear of your loss.  Hope you found the forum helpful. It's great to hear that your dad was positive and strong through this. Positive and strong is a good way to go through life, no matter what one's circumstances. 

Jerzy

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I'm very sorry to hear this news.

This disease really is nasty and it's not beat yet for sure. I lost a good friend this summer. He also lived about 2 years from diagnosis. I don't know the details of his treatment - he chose not to discuss it.

This just tells me that we have more work to do and that I really hate that this disease is taking good people down.

Wishing you peace in this difficult time as you grieve the loss of your dad.

Todd

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

tsd,

 

So sorry.

 

Icemantoo

 

Deanie0916
Posts: 285
Joined: Nov 2016

to hear about your Dad's passing. I hope you are finding comfort in all of the good times and memories. I know his participation in the trial will give more knowledge to use against this disease. Prayers to you and your family.

mrou50
Posts: 389
Joined: Mar 2013

I am sorry to hear that your father passed away, but the good news is his suffering is over.  Thank you for the update.

Mark

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

For your loss TSD.  I hope your memories of happy times together help to ease the grief.

God Bless,

Donna~

Eliezer2
Posts: 85
Joined: Aug 2012

did sutent 4 years and then the pair you mention by infusion.   they worked for me really well but only short time - maybe 8 months.   individual experience widely varies.  you can at least gain some respite for months even if it wears off.  the infusions have very few side effects.   sutent can also wear off.

Qt34167's picture
Qt34167
Posts: 41
Joined: Nov 2015

sorry to hear about your loss.  I am on Sutent now for 18 months, 14 on, 7 off.  Hopefull 

 

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