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Pathology

tango xray's picture
tango xray
Posts: 26
Joined: Oct 2017

So I had my open partial 11/1 and have been recovering like a rockstar for the most part minus a few days here and there.

I had my follow up 12/11 and the surgeon went over the pathology report ...my stage 1b changed to stage 3a, Grade 3.

I will meet with an oncologist Wednesday, 12/20 to discuss my options but I was presented with a trial study that is a double blind placebo... just wondering, if anyone has participated in such. I am not opposed to a trial study but being given a placebo/no treatment doesn'the feel right...

 

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hi tx,

My T1b remained a T1b so I can't answer your question.

But... I will share a few thoughts.

First of all, remember that the placebo might turn out to be better. Trial drugs are sometimes disasters.

I can't advise, but if I was in your situation I think I would take some time out to think and certainly not rush to a decision.

But what is your situation? Do you know the probability of the cancer appearing elsewhere?

Steve.

 

 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

I decided to enter into a test trial after my surgery.  Half of us were on Everolumus and half had the sugar pill.  I had the real stuff.  I wrapped up my year on the trial about four years ago.

There's a split as to whether test trials are good or not so good.  For me, it worked out to be a good thing.  I have no regrets about it.  My oncologist feels that the trial was effective for me.  Of course, that's hard to prove.

Perhaps a second opinion from another doc would help you make up your mind on this.

Dutch

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is important for everyone. I was in a phase 1 nivolumab study. Before it got a real name. They called it MDX 1106. Unfortunately after resolving 20 ish tumors I was bumped for minor growth in a node or two. But it saved my life. What is important is to know that I had already been told at 4 previous cancer centers that I was too advanced and only had months left. If I didn't get the 5th consult, I would have died. Drs and clinics are not equal. The fact is that even if they knew of the trial, they may not have had access to it and it was never considered in their scope of care. But they all were ready to monitor my demise within their available services. That was 2011.

What I am saying is to research the available trials on your own and choose one that fits your needs and doesn't use a placebo. Trial info is available on line. It may require new caregivers and facility but you must advocate for yourself.

Not only am I still here 7 years later but my success in the trial contributed to it's fast tracked availability for others. Nivolumab/ opdivo/mdx 1106 is keeping people alive with kidney, lung, and melanomas.

I was also given an option for a position in a votrient trial. It is significant to know there were placebos. (I didn't need a false hope. Nivo was a potential cure). If I had incorrectly chosen the votrient study, it would have also eliminated me from many other available and future trials. Needless to say, I wouldn't be here typing this.

Don't fall for their sales pitch. Good or bad they need data to complete their studies and ensure continued research grants. You would only be a chart or id#. That is a big part of why you don't feel right about it.

 

tango xray's picture
tango xray
Posts: 26
Joined: Oct 2017

for your input. I have been researching options and have a list of questions. I  left the last appointment feeling a little deflated. I really thought I was cancer free after surgery so to be told of the different stage but only told of the test study and nothing else left me with way more questions than answes.

Thank you all again and Merry Christmas!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

You don't mention what the study drug is. What drug is it?

I had the same experience as you. My stage 1 turned into stage 3 after pathology came back. It's the reason I don't really care for all of us telling people with stage 1 pre-surgery that they are going to be cured. There's substantially higher risk of recurrence with stage 3 compared to stage 1. The two RCC experts I saw put it at like 20-30% versus stage 1 is more like 5-10% (possibly less if you're a lower grade).

Unfortunately, there's no treatment for stage 3 other than just to follow up. The treatment, if they had one, would be what they call "adjuvant thereapy". Other cancers like breast and some other ones, have found that if they give treatment they can reduce the risk of it coming back. As far as I know, there is no approved adjuvant therapy for RCC still. That's why your choice is between the approved therapy (no therapy, just follow-ups looking for recurrence) and a trial drug. When they do studies, generally speaking, ethical guidelines require that you at least get as good as what the standard care is. In your case, that is just follow you and give you no drugs.

I was in the same boat as you 5 years ago. I chose to do a double-blind study of everolimus vs placebo. I was in the study a year. After a second year my cancer returned, so I was unblinded from the study (they needed to know if I had had the real drug or the placebo to treat me) and I found out I'd been on the placebo. As I remember, this study has turned out to not show any benefits in reduing recurrence.

I was given a choice at the time between two studies: everolimus vs placebo or votrient vs placebo.

I had heard that votrient might have shown some slight benefit(please fact check this with your doctor)? But I don't think it was a major benefit. I chose everolimus because the side effects seemed to be less and also because to me it didn't seem like votrient was likely to work as an adjuvant therapy.

If you're stage 3, grade 3, I do urge you to be followed closely. You need to get CT scans (chest, abdomen, pelvis) with contrast every 3-4 months the first year, and every 6 months after that to 5 years (and I'd continue after that indefinitely at least annually maybe every 6 months) in my opinion. You might also want to get a nuclear bone scan and a brain MRI just to make sure you really are cancer free. One of the benefits of a drug study, is they will do those tests up front to baseline your NED status and they will also follow you more closely during the study. I liked getting hooked into a good oncologist and good cancer research hospital program. My cancer recurred in the adrenal gland that had been attached to that kidney 2 years after my surgery, so I had to have a follow-up surgery. I'm with City of Hope near Los Angeles and see Dr. Pal, an RCC specialist there. I'm very glad I did that study with him, even though it turned out I was on placebo.

After my recurrence, they offered a new study which was votrient versus placebo. I did not do that study. Votrient is a pretty tough drug side-effect wise. I didn't want to take if if I'm healthy. I just couldn't get myself to go through a year of stomach issues, diarrhea, possible liver problems, white hair, etc. not knowing if it would work (and my intution was that it wouldn't).

I hope you're being followed by an oncologist with RCC experience. With Stage 3 Grade 3, you really want someone following you that has treated a lot of Stage 4 RCC. They need to know what they are looking for and what they are doing.

Best to you,

Todd

donna_lee's picture
donna_lee
Posts: 1014
Joined: Feb 2009

As outlined to me in 2006, in regard to being in a drug trial, the placebo given is a drug that has already been through all the trials and is currently in use for-in your case, kidney cancer.   To tell you how long ago that was, the only drugs available were sorafinib or sunitinib, along with ILII immunotherapy.  Because I had no active site that could be monitored, I was not a candidate for any type of drug therapy.

And a change in the staging following surgery is a way of qualifying and quantifying what was found; and it doesn't always mean you are a candidate for drug therapy.  Unless you have had a bone scan, MRI, full CT-either/or one or all of the above, and the Dr. is positive there is an active site, I would question why he wants to put you in a trial or even put you on drug therapy.

In both 2007 and 2008, my follow up CT's did find single nodes that had increased in size, and we're only talking mm's difference.  Each was removed within a month of discovery; and thus far, there has been no evidence of disease-NED.

More questions need to be asked, and propably getting more than one more opinion.

All best wishes for a relaxing Christmas Season.  (Says someone waiting for a follow-up CT on a spot in my lung.)

Hugs to both of you.  donna_lee

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Like FoxHD, nivolumab has saved my life after being diagnosed with Stage 4 mRCC in April 2015 (at age 63) - about 12 tumours including two in my pancreas.  My trial was called Checkmate 214 and used Nivo initially in combination with Ipi for 3 months, then Nivo alone ever since.

It is available although you may not get into a trial using it anymore.  Nivo is now called Opdivo.  There are also other immunotherapy drugs that might help.  Like the man said, get a good oncologist and dont give up hope.

Best wishes,

Fred

 

 

sandy23
Posts: 143
Joined: Jan 2017

My husband was also told that it would be most likely stage 1 but the pathology report put it at stage3, grade 3 just like you.  It really is a shock to hear those words, isn't it?  I am sorry that you had to have that feeling also.  

Do you mind if I ask why you were put up to stage 3?  He had one microscopic area of fat invasion.  But the total margins were clear, so I guess that is good at least.

For what it's worth, he has had 2 sets of clear scans since the surgery in March.  If you ever want to talk or compare notes, please don't hesitate to reach out.

tango xray's picture
tango xray
Posts: 26
Joined: Oct 2017

for the additional comments/information.

Sorry, I haven't been online for a bit.  I have returned to work and trying to feel somewhat like my "old" self.  I did meet with the oncologist in charge of the study and decided NOT to participate.  At this point, I would rather have regular scans,  try more of a holistic approach, and be optimistic.  I will have scans every 4 months since I am not participating in the trial vs scans every 3 months had I decided 'yes'.

The name of the drug is Atezolizumab.  The study is called:  Phase III, Multicenter, Randomized, Placebo-Controlled, Double Blind Study of Atezolizumab (Anti-PD-L1 Antibody) as Adjuvant Therapy in Patients with Renal Cell Carcinoma at High Risk of Developing Metastasis Following Nephrectomy.  The goal is to learn if the drug can help control RCC with a high risk of the disease coming back as compared to a placebo.  A placebo is NOT a drug. 

And like I said, I am not at all opposed to participating in trial studies but I just didn't feel this one was the right one for me.  I most definitely appreciate all of your feedback and will try to pop in a little more regular.

I received a card from a dear friend that just said:  CANCER IS AN *******!  LOL

Let's kick it's ***!

Sherrine

 

 

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