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Update Kidney Cancer Treatments

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

I had my PET/CT Scan with contrast done last Friday.  It was a really bad day, whatever could have gone wrong went wrong.  We arrived at Georgetown Hospital at 9:20 am and left there at 4:40 pm.  The best part of the day was that all the test were finally able to be done.  My last scan was in March with no defintative cancer showing.  I will find out the results on Friday, I am hoping and praying that I will be ok.  It really is scary just waiting to hear, I am praying that the tests will be clear again! I will let everyone know about the results Friday afternoon, my appointment is at 1:00 pm.  Thank you for being here and for all the well wishes and prayers!

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

Youre not posting all details on youre tnm, grade etc, so take the following words with some precaution. But, less than a miracle might do it. Total complete resection of RCC lung mets actually gives approx. a 30 percent chance of long term survival.

/G

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

You are sounding just like my Doc, that is exactly what he has said! Thank you so much for making my day a little brighter!

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

Obviously metastatic disease is not somehting that in general increases your longterm odds, but, and its an important but:

- Patients with lung mets posing AFTER the original curatively intended nephrectomy have a much better outlook than patients with so called synchronous mets.

- If you have a relapse and new mets to the lungs, and a complete resection is possible, the above thirty percent odds doesnt change.

Have in mind that I am only referring here to lung mets, and only those were complete resection is possible.

As for addltional treatment, its pretty much standard that if complete surgically removal is obtained control regimes are all that is done. In very few cases adjuvant therapy might be deemed suitable. If you are unclear about this you should discuss that part with your oncologist, and Im stressing oncologist, not GP or the surgeons.

Lastly, when NED, have in mind that your lifestyle and general health is an important barricade against any MCC getting a chance to manifest as something malign.

/G

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

But I'm here to talk, support and cheer whenever you need it.    I also listen well.

In the short time I have been on this discussion board, I have heard inspiring stories of courage and great success in the face of tremendous odds.  This isn't hyperbole, the stories are here.  The support is here for whatever the diagnosis turns out to be.

Praying for all the best for you!

Michael

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

I wish I had of found this sight in 2011.  In just the few short post I have read, I have learned alot, and feel that this battle is being fought everywhere by so many of us!  I am so thankful for the support and the prayers, and just to be able to vent when I need to give my husband a break! Thanks for being here, it is so extremely helpful!

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Admittedly biased here, but this site IMHO has the most compassionate and understanding supporters on the web. Post anytime you need someone to listen or wring out the tear towel. Most of us have been there. Stay strong.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Having metastatic kidney cancer is not a good thing, of course.  But Lung Met(s) that can be removed surgically has the best outcome.  I am in the same boat, as I had the Kidney removed 1 year ago. At six months (in dec, 2012), a growth was identified on the lung.  It was resected.  My 3 month scans were clear; The Doctor I saw made it clear that, when treating my cancer (Sarcomitoid), the best treatment is surgical resection when possible.  Save the drugs for when you need them.

The studies of Adjuvant theropies have not had the desired results.  Some are showing decreased long term survival; none are showing statistically significant increased survival.

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I'm very interested in which adjuvant studies have shown decreased long term survival. What drugs/studies are you referring to? Are you referring to studies that are complete? Or early results from some of the ongoing studies?

I'd thought there weren't very many studies complete using any of the new drugs (if any at all)? Since they haven't had drugs prior to these new drugs that were effective in metastatic disease (other than HD-IL2), I'm not sure what they would have studied unless it was HD-IL2? 

Thanks!

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Todd, there's a number of completed studies with the newer targeted therapies showing zero benefit from using them for adjuvant purposes. 

Don't get too jumpy though about the observation that there has been some evidence of reduced long term survival - as I recall , it's not a pronounced effect - otherwise no-one would be continuing to do such studies, although there seems to be very little theoretical justification for conducting them.  

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Targeted therapies are not curative.  Rather, they are to slow or stop the progression.  The idea is they target the pathways which enable tumor growth (as explained by one of my Dr's).  

Often, the tumor will adapt to the targeted therapy.  When done Adjuvantly, the adaptation occurs with smaller tumors.  Then, when something observable is growing, it is resistant to that drug.  

The net result is you might have a longer disease free interval (by months), but the survival time is not any longer, and possibly shorter.  And you have the toxcicity of the medicine for no benifit.

You save the systemic therapies for when you need them.  Surgery first, then drugs if there is not a sugical option.  Less that optimal, but that is life with RCC.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Could you please name some of the drugs studied, or maybe name some of the studies? Or tell me where to look? I'd like to see these papers.

I was under the impression that the new drugs like Votrient and Everolimus and some of the others were so new, and it takes so long to do these studies (5-10 years), that there were no completed studies.

I'm interested in knowing which drugs were studied and how, and for how long, etc. I'd like to see the papers.

Or could you tell me where you got the information? Are you relaying information your oncologist told you?

I would hope if they've found negative benefits, it shouldn't be ethical to continue to study similar drugs and they wouldn't do it. Unless the negative benefit was so slight that it wasn't clear if it was neutral or negative....

Thanks,

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Todd, perhaps I can save him the trouble.  I've referred you to these materials before, summarised the outcome before and also explained the rationale for having low expectations of success, previously.   This time I'll go further, detail a good source and quote some key excerpts.

The whole matter was given a good going over at the 2012 KCA National Patients Conference at MDAnderson in Texas.  This topic was comprehensively covered by Chris Wood, by common consent the best onco-urological surgeon in the World.  Peggy Zuckerman from California (who has paid a very occasional visit here, was one of the key participants on KIDNEY-ONC and now is on Smart Patients)   performed a great service for us all in reproducing most of that Conference's proceedings, together with the slides at her excellent WordPress blog which you might care to explore.  There's days/weeks of reading there so I'll point you to the part relevant for present purposes, viz:

http://peggyrcc.wordpress.com/2012/06/

Since there's a vast amount of material there, I'd recommend that you scroll to the bottom of that entry and then back up to find the first of Chris Wood's four talks:  Locally Advanced RCC/Kidney Cancer; Dr. Chris Wood; Options & Treatment 1/4 Parts

You'll find a lot of good stuff there.  I promised a few key quotes, so here goes:

Adjuvant Therapy means some form of therapy– chemo, radiation, vaccine, whatever–after complete surgical tumor resection with the idea to decrease the risk of recurrence of disease.  The benefit is that the patient has already had surgery before getting additional therapy, but the downside is that many of those patients may have been cured by the surgery and they may get treatment they don’t really need.

That was the point I made to you when you were first contemplating entering the EVEREST trial.  He goes on to present a very clear and intelligent analysis of this field.  The use of all adjuvant treatments prior to the targeted therapies is dismissed easily:

Adjuvant Therapy: 2012

A variety of trials have been performed. Many  patients  have participated. They include radiation, embolization, energy ablation, a variety of different hormonal therapies, immunotherapies with interferon and interleukin 2, all having been used in an adjuvant setting.  There have been a variety of vaccines preparations and we did a Phase III trial of thalidomide trial here. To date, not one of these therapies has shown benefit in the adjuvant setting.  In fact, many of the patients on the treatment arms did worse than those who were not treated.

Then we get to the nub of your question

What about targeted therapies?  That is also the great unknown where  things stand with targeted therapies in the adjuvant setting.

Since 2006 there have been seven new agents against kidney cancer. It’s been a revolution. And to be honest, many  have benefited from that advance.   How do we use these agents in the context of adjuvant therapy?

There is a variety of trials recently completed or in accrual, ongoing. Tthe ARISER Trial used an antibody called G250 against Carbonic Anhydrase IX, and patients were randomized to get  either antibody or placebo. This trial completed accrual many years ago, in fact, and we are still awaiting results which leads me to believe that is probably going to be a negative trial.

One thing that we did learn from this trial is that tolerance for the toxicity associated with targeted therapy in the adjuvant setting is not the same as in the metastatic setting. In this trial 41% of patients stopped therapy early, not because disease returned, or because they finished, but because of toxicity.   I think it comes down to an individual assessment of the risks.  If I told you that you have a 20% risk of your cancer coming back, versus your 70% chance of your cancer coming back and you are miserable on this therapy, all of a sudden 20% doesn’t look so bad.

He goes on to discuss various trials, including the ASSURE trial they conducted of which he says:

Slide 11

One thing that we did learn from this trial is that tolerance for the toxicity associated with targeted therapy in the adjuvant setting is not the same as in the metastatic setting. In this trial 41% of patients stopped therapy early, not because disease returned, or because they finished, but because of toxicity.   I think it comes down to an individual assessment of the risks.  If I told you that you have a 20% risk of your cancer coming back, versus your 70% chance of your cancer coming back and you are miserable on this therapy, all of a sudden 20% doesn’t look so bad.

My concern about this, because at the end of the day, if this trial matures and it is negative, will it be negative because the agents did not work, or because the patients could not tolerate the side effects. And too many patients stopped the trial early or had dose reductions.  I’m afraid it is not going to be interpretable.

Aside from the theoretical reasons for supposing that none of these agents CAN be expected to work as adjuvants, this issue of interpretability may well sink all of these attempts.  He goes on to observe that it's anybody's guess whether any of these trials and nay of these drugs will even have any relevance by the time the jury's finally in!  All, we hope, will have been superseded by then by much more effective treatments.

Some time has elapsed since the work he was reporting on.  From the recent AVEO tivozanib fiasco, we see, writ large, the non-feasability of carrying through these trials in the US.  Recruitment problems are also at present looking almost insuperable in the UK.  Meantime, there don't seem to be any preliminary findings of success from any of these trials, whether completed or still ongoing.

You will, I'm sure, readily appreciate many of these issues since you're encountering the problems at first hand and, as you'll read, you would be far from the first to drop out of a trial before completion, if you decide not to stay the course. 

[On a purely personal note, I'm confident you'll forgive me if I pass a comment about your situation.  In your shoes, I would be carefully weighing the hypothetical benefits of being in the trial against the compromise of my lifestyle.  If you are on an agent which is immunosuppressive and which prejudices your daily activities via the unpleasant side-effects,  you might be better off if you were feeling well and able to devote yourself, rather, to optimising your lifestyle - diet, regular exercise, meditation, etc?  If the effects of the trial are undermining your general health care while holding out purely putative benefits, you might be better off not in it?]

As you are wont to say, 'I hope this helps'.

 

 

 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Live life.  Do not obsess about your disease...it could be gone.  Adjuvant theropy for RCC has not shown to increase life spans.  And it decrease quality of life.  Whack-a-mole seems to work better.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

It's very much appreciated. I'm not sure the advice I received from my RCC specialists was in contradiction to anything you've presented. It appears it was not. It wasn't an easy decision to make and I'm still open to reason and evaluating what I'm doing and why.

Both of my RCC oncologists, Dr. Figlin and Dr. Pal, were primarily concerned about being able to stay on the drug for a full year of the study. They disagreed about which of the two drugs would be best for that (Dr. Figlin thought side effects were a non-issue for me given my generally good health, and for that reason I should go on the votrient study, while Dr. Pal thought Everolimus was much more likely to be tolerated in terms of side effects and for that reason he encouraged me to go on that trial). Dr. Figlin was neutral on particpating in a trial at all with regards to his advice to do a trial or not and left the decision completely up to me. If I did do one, he suggested the votrient one was the best choice. Dr. Pal thought I should try something given my high probability of recurrence (about 50%, both doctors agreed on this as did my uncle) and in his opinion the low likelihood that everolimus was going to cause me any problems. Patients in an adjuvant setting aren't as willing to tolerate side effects, but I also would guess that patients in adjuvant setting of a drug trial (where the effectiveness is unknown) are even less willing to tolerate side effects. This was the point the two doctors raised in our discussions.

If I'm having side effects, they are pretty mild and 4 months has been not too bad. I doubt I'll regret having tried it now that I have 4 months of it under my belt, but I suppose it could still happen.

It helps me better understand your reasoning.

Best wishes,

Todd

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Danbren, I am sorry you are having to go through this, cancer is not easy company. Determination, a hope filled heart and your faith can pull the rug from under any statistics. From where I am standing, you sound as if you have all the right ingredients to win through.

All the best with your scans next month, we will be routing for you, and you are automatically on my prayer list:) 

Djinnie x

Blueraidermike
Posts: 25
Joined: May 2013

Do not focus on the stats.    Understand your personal case.   Make sure you have the best ONC for RCC you can get access too.    Think about what you can do (exercise, eat the right diet, undertand future theraphys) versus what may or may not happen.     Empower your self - you are in charge, not your doctor - YOU.

You have a lot to live for!

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

If you look at the survival statistics most of us should not be here.  My msRCC (solitary lung met) gave me a median survival rate of 8 months.  So I am now 4 months into bonus time, and "NED".

The survival rates are statistical, and based on old data.  They do not know the 5 year rates for people diagosed in 2012....they will know it in 2017.  Treamtents are improving...better meds, better imaging, and less invasive surgeries. 

Best advice is to enjoy each day.  Worry about the numbers when buying life insurance.  If anyone is willing to sell it to us, let me know :). 

Also, my Dr says, with operable met, the 5 year rate is more like 50%.  You are NED. Celibrate that.

(and disregard my future post when I am feeling down about the odds).

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Dear dhns1963,

     Thank you for putting me in my place, and putting a smile on my face.  You are right, yesterday is gone, today we are here, and tomorrow are gifts!  Thanks for reminding me, and making me thankful for today and to stop wasting time worrying about tomorrow!

     I fully plan to be here for your down days and to remind you to smile and keeping living for today and not to worry about tomorrow!

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Let me repeat what I tell my husband. Those statistics are dated and do not take into account the numerous new treatments being tested nor have they been updated with the success being experienced by so many in trials now. Those trials are still in progress (many showing remarkable success, e.g., Fox and John), but that success won't be documented in the survival statistics as long as the trials are still ongoing. Read the thread by "BDS" on "What's coming down the pike". The advances seem to be coming faster than our ability to keep up with them. So surround yourself with this positive info, no negative stuff allowed; it only feeds the cancer. When John was first diagnosed (October 2011), I googled and googled and googled, and what I found was depressing. John was given months, not years.  John is now five months short of the two year mark and going strong. I fullly expect him to bury me!Smile

I hold on to the point made here a year or two ago in discussing the many options now available to late stage kidney cancer patients. Kidney cancer is no longer a fatal disease; it's a chronic one. I believe that.  

 

cran1's picture
cran1
Posts: 139
Joined: Mar 2013

Wishing you the best Danbren2.

cran1's picture
cran1
Posts: 139
Joined: Mar 2013

Wishing you the best Danbren2.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Those stats do lie.. as others have said.. they are old and do not take in to account all that has been learned since those stats were printed.  In fact, if you can read this.. then you are reading a posting from a ghost..!   Oh wait.. I am real and alive...!  Many of us have passed the stats... me included... and I plan to be here a long time...

Practice for the TT Races start in less than an hour... life is good..!!

Cheers.!

Ron

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

are not nearly accurate to the stats you would find from just over the past year. Too many of us are doing real well.

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