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Stage 4 Treatment Plan

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

I'm probably opening a can of worms asking this, but here goes...

Just for some background, I'm currently Stage 4 but NED. My second tumor in my adrenal gland was just removed via surgery. I had clean scans last week. Looking forward, I'm trying to decide whether to stay where I am or move to another hospital. I'm not entirely happy with my current oncologist.

My current oncologist does not do IL2. The hospital doesn't offer it. When I asked why, he said it kills more people than it helps. His treatment plan, as I understand it, should inoperable tumors return, would be some combination or sequencing of TKI drugs. He did say he expected new tumors "not likely to be operable". This oncologist will not give me contrast due to my poor kidney function. His plan is to scan me every 3 months for the next 2-3 years.

I had a consult with an oncologist (also an RCC specialist) at another hospital this week. He said if I have another tumor in the first year after this one, he would not operate even if operable. He would give me IL2 and see if he gets a response first. He will give me contrast and scan me every 4 months for first year, every 6 months for second year. If I got an operable tumor after the first year following my most recent recurrence, he would operate. He thinks the highest risk is in this first year.

I'm interested in hearing opinions on these two approaches. What do you guys think?

I really need to educate myself. Since both are RCC specialists, I would imagine that both approaches are reasonable and doctors are doing this (and others). Makes it hard to decide what to do.

Good news is I don't have to decide now. On the other hand, I'd like to move now while I'm NED if I'm going to move and not change doctors under pressure.

Thanks.

Todd

Srashedb
Posts: 482
Joined: Dec 2013

Todd:

we met with my husband's radiologist/oncologist on Wednedsday and she explained the different radiation options; the technology is quite amazing. 

If you were to get an inoperable met in the future, that may be an option (depending on the location). My husband had a good-sized met to the T11 when first diagnosed and he received cyberknife. All his scans have shown no tumor there. For young people, the megadoses of radiation could be problematic in the next 30 years but for stage 4 renal patients past middle age, it is a great option.

all of the reading I have done about the kidney cancer meds available today show response but not necessarily long-term. The exception seems to be a drug given after IL-2. 

my husbands's oncologist is recommending xgeva which makes sense since he has bone mets BUT they are finding that in order to be effective, it needs to be combined with a systemic drug. The conservative (med-wise) part of me says no, save the drug for a met not in the bones.

as I recall, you have a relative who is an oncologist; what advice is he/she giving you?

My husband will be getting some radiation to his rib AND cyberknife for a 7 mm on his L3 pedicle (it showed uptake on a CT without contrast and may not even be cancer but she is 80% certain it is). If it doesn't respond, surgery would be the next step. 

Sarah

Blueraidermike
Posts: 25
Joined: May 2013

Todd,

There is a lot of discussion that if you have a recurrence within a year, your cancer is likely active and therefore surgery may not be best,  Others if its been 2 years, surgery is best - I think it all depends.   How healthy you are, could the procedure be done in a minimally invasive way.   What is your age, etc.  

I just had a recurrence in a lymph node in my chest.   It was identified on March 12, I had surgery (VATS) on March 27, confirmed RCC April 2.   Technically I am back to NvED.   I will be scanned in June and see what's what.    I have had no treatement the last 2 years, its been great.   I hope I can get a similar interval.     

Here is my thinking on recurrence. 

Surgery  or Surgical alternatives.    Almost always if you have cancer is one or a few spots you should try to cut it out or use tools like SBRT.    There is research that shows this leads to the best outcome, its better than HDIL2 reponse rates.    In my line of thinking, I am not expecting to be crued, I am hoping for time without treatment.    Good time.   Time I can work, time I can be as fit as possible.

If you can't have surgery; then my next best optoin is a clinical trial to combine the new meds (Nivo + Ipi).   If I can't get into one of these then HD-IL2 with SBRT.    The idea is at this point I am healthy, not a bod time to take a swing.

Then the targeted drugs.     I took Votrient for 5 months before the surgery.    I had a good response that shrunk my primary and and my lung mets.   There is a chance depending on what was happening in my life that I might take this again after a recurrence to buy some time.   Hopefully in a year or so, the newer drugs will be approved. 

I think the most important thing for you right now is to get yourself as healthy as possible.    If you don't exercise, start.   If you diet isn't the best, improve it.   This will not neccessarly prevent your cancer from coming back but you will be phycislly ready to take treatment.    Having co-morbidities along with RCC is more difficult road.   Some things are completely out of our control, but some are.   Work on the things you can control. 

All the best,

 

Mike 

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

Radiation only works for bone mets....

Srashedb
Posts: 482
Joined: Dec 2013

radiation can work for liver and brain as well; the technology has made amazing strides. We were just at the radiation/oncologist at a major teaching university.

Sarah

foxhd's picture
foxhd
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I'm counting on the results from the spinal canal radiation I recieved in feb. to last for a while. I remain painless and my nuero motor function continues to improve. I don't know how long this will last, but it is working now. I think it helps the votrient be more effective. I remember when they said radiation doesn't work. Then it worked on bone and brain. As Sarah says, They are making amazing strides.

sblairc's picture
sblairc
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New emerging research indicating it may be promoting immune responses to cancer. I just can't recall the type of radiation it is. 

Editted to add "5 or less metastic sites"

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

From my notes at Kidney Cancer conference, paraphrased:

Very new concept: using stereotactic radio surgery in combination with drugs to stimulate the immune response and it may bring about long term control of metastic sites

dhs1963's picture
dhs1963
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CT contrast is harsher on the kidneys than MRI contrast.  I currently get Abdominal MRI W Contrast+ Chest CT (wo Contrast).  It seems to be working for me.

 

As for the recurrance, I was told by my Onc. if my cancer recurs (also stage 4) with a solitary met, we would wait three months to find out if it remains solitary.  If so, then take it out, otherwise, other TBD treatment.

Footstomper's picture
Footstomper
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Joined: Dec 2014

I was told 25% chance of cure. 20% risk of mortality. Definitely a Dirty Harry moment. Do you feel lucky Punk?

thaxter's picture
thaxter
Posts: 124
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Are more like 8-10 percent complete response, 20 percent partial response. Even during early trials 20 years ago the fatality rate was never that high. And currently I would be surprised if fatalities were even 1 percent.

Footstomper's picture
Footstomper
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my doc was trying to scare me before I chose to do it.  I dunno, but I didnt die. I think youre probably right.My wife tells me I get everything wrong, but when youre caught up in the treatment, you just ride the rollercoaster.

todd121's picture
todd121
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Joined: Dec 2012

The second oncologist I saw said he's treated 346 patients with IL2 and had 1 fatality, and he had some explanation/reason as to why that one occurred (sucks if you're that 1, I agree).

Definitely low in his case. Of course I didn't get to hear other kinds of complication rates...

He's very gung ho on IL2, at least trying it.

What ever happened to PD1? I saw Dr. Figlin last year and he was telling me 30% complete response and another 60% partial response to a PD1 drug. I don't remember which one, but after that I never have heard anything like that again. I was wondering if he maybe spoke too soon when he said that?

Todd

Footstomper's picture
Footstomper
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I dont think anyone on this board who has done IL2  wouldnt do it again in a shot if they thought it could lead to a cure. It wasnt a barrel of laughs but I got to watch lots of PBS documentaries and met loads of frankly inspiring nurses and doctors.

sblairc's picture
sblairc
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Joined: Feb 2014

But one question I'd like to propose to the group is this: Does anyone know on what basis a doctor can determine if mets would be "unlikely inoperable'?

I don't understand how this doctor can make this prediction. Is it based on the subtype? It certainly seems many of us here have had excellent responses to operations to various sites of metastatic disease. 

This seems unusual to me, but if the doctor is reputable then who the heck am I to question? 

Blueraidermike
Posts: 25
Joined: May 2013

I want to respond to to diff posts.

Radiation - there are muliple ways to target many areas on the body with technologyes like SBRT.   This area is rapidly growing.  Many soft tissues in the lungs, pancreas, etc can be targeted with high dose radiation.    You have to talk to the right person - a radiologist oncologist who specializes with these tools.   

Sugery - what one doctor says is inoperable, another says is.    When they say somehting is inoperable what there saying it this could be dangerous.   Risk versus reward.    So you need to go deeper and ask, how many of these procedures have you done?    You may find your surgeon doesn't have expericece or may not be education in the right technigue.  

My point is, if your doctor makes an emphatic statement, feel free to get another opinion.     Second point is, if you have rcc, you need to become an expert.   I am afraid there are people around the country just assuming whatever my doctor says is the Gospel.

 

 

Footstomper's picture
Footstomper
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The urologist I saw originally examined me, including an unannounced and very surprising prostate exam(!!), looked at my scans and immediately declared that the required treatment was outside his comfort zone and beyond his competency and referred my to a specialist in a teaching hospital

Blueraidermike
Posts: 25
Joined: May 2013

Footstomper,

Same things for me, my Urologist immediately got me an appt with another more experienced doctor in Boston.   Then that Doctor suggested I talk to Dana Farber, then DF suggested I talk to McDerrmott at BIDMC.   By the time I got to Dr. McDerrmott, I told him he was my doctor.     In my journey I have found incredible coloboration in each step.  

Thankful,

Mike

Limelife50's picture
Limelife50
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Get a new Oncologist i am sorry that is stupid yhea right lets do life extending drugs when  there is an alternative cure through HD IL2 and cmon i would think surgical intervention should always be considered.

foxhd's picture
foxhd
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Joined: Oct 2011

Let's take my case. Latest tumors were growing down the spinal canal. Wrapping the spinal nerves and pushing against my spinal cord. This was at many vertebral levels. Does anyone really believe that someone could split my spine, perform multiple laminectomies, then disect the cancer out without damaging my nervous system irrepairably? Who would take that risk as a patient? With swelling, bleeding, risk of infection, the pain and length of recovery time, and probable quadriplegia, not mentioning the probability of tumor regrowth, that would be nuts. I don't believe any neurosurgeon would touch it. This is quite a bit different than having a section of lung removed.

Blueraidermike
Posts: 25
Joined: May 2013

Fox,

In your case, your right, surgery doesn't make sense.   I think what we are seeing today is the covergence of therapies.    I haven't add any active disease in 2 years then got an enlarged lymph  node in my upper chest.   A decade ago this was an open procecure, a major operation.    They used VATS to cut out the entire note.   I was one night in the hospital and the recovery has been easy.    Pathology showed rcc.   In 3 months I may show other new spot or nothing, I have no idea.   This is the tension we live in (I know you know this more than most)

What we are seeing all at once is better surgical technigues, advanced Radiology tools, slowly understanding targeted therapy and now immune therapy.     I wish it would all move faster for your sake and mine.   But it is moving.  As patients, we in turn are move pro-active than ever.    Thank goodness in the US, we can choose our doctor. 

What is intersting about Todd is he is NED and some doctor is making emphatic statements.   Crazy talk, IMHO. 

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

Ok, just to get back to the original topic to help Todd with his decisions: 

I am I accurate in reading that you have an opinon from one doctor that has already decided that IF you get any further metastatic disease, he is PRESUMING that there won't be any hope for surgery? "Not likely to be operable"

I guess that is just a red flag to me. How can he say that they are "not likely to be operable" 

That's just where I don't understand. On what basis is this doctor able to tell you that any further mets are "not likely to be operable." This just seems unusual to me, given that all I seem to here is how "unpredictable" kidney cancer is. 

Jojo61's picture
Jojo61
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I have to say I agree....and didn't reply because I was kind of confused. How would he know it is inoperable? He doesn't know where it would show up. Lots of people have had follow up surgery and it has been fine. Yes there are examples, such as Foxy, that it is inoperable, but when it can be removed, I would wonder why it would not be removed?

Is it possible to talk to another RCC specialist, Todd? Or maybe we just misunderstood your comments?

todd121's picture
todd121
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Joined: Dec 2012

I'll answer several posts at once here. He's not an older doctor that hasn't kept up with the latest. He's a very young doctor that is on top of things. He was trying to get me into a drug study, so I "think" he might have been trying to scare me a little, or at least adjust my reality to the idea that the next tumor(s) aren't likely to be operable, and by that I'm supposing he's assuming if it comes back soon it'll be bones, or multiple mets, etc., in which case many oncologists suggest systemic therapy instead of surgery because it's advanced beyond surgery helping much.

Now that's a lot of assumptions on my part!

Even the second doctor said if I got a single operable tumor within this first year, he wouldn't operate. He'd do IL2.

Some of the confusion, I guess, is that we are doing a lot of hypotheticals here.

Now the second doctor said that the reason he'd use CT with contrast is because the next most likely place for mets is lungs or lymph nodes in the chest/abdomen and they are hard to see and the contrast would help find them early.

I'm inclining toward the second doc just because he was more optimistic, is older, has more experience, and has a good sense of humor. But I'm planning to reserve the right to get second opinions, including from my first doctor, if I need to. :)

Appreciate all the comments.

Todd

Footstomper's picture
Footstomper
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Is the first Dr an older chap who perhaps hasnt kept up with the latest research? It does seem to be coming thick and fast.

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

making a point. Believe me I wish I had the opportunity for surgical removal. Look at how well Donna has done. I believe she had 2 or 3 procedures to remove mets. Including a lobectomy. I think everyone knows that I strongly believe that we can heal from anything our doctors do to us. Cut me up. Don't care. Because I'll recover. I'd be jogging before you know it. There is no better way to be cancer free than by removing it. This particularly refers to secondary mets post nephrectomy.

This doesn't always pertain to primary kidney tumors. Depending on the case, it often makes sense to use drugs to attempt to shrink it prior to surgery.

hope1111
Posts: 2
Joined: Apr 2015

Hi, On stage 4 kidney cancer which spread to my lungs. Was on Sutent, now on trials with avasin and new phase 2 drug mpdl320a. Great results in phase 1, so I'm hoping for the best. Please feel free to contact me, I'm here to share and hopefully help others

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foroughsh
Posts: 779
Joined: Oct 2014

Everyone is different, but I'm sure i would choose surgery, if possible. when i was diagnosed I wanted that thing out of me ASAP, I was very happy and relaxed during the surgery day because it was the day i got free of that damn "C". worries came from the day after made me feel, thinking will it come back? :D

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

I would trust your instincts. Your comments about the doc and clinical trials are probably right on. Clinical trials help get drugs to the market and participation in cinical trials is very low, which is unfortunate but I understand. I think I'd go with the doctor that would use Il2. That's a good shot at a cure. 

 

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