Stage 4 Treatment Plan

todd121
todd121 Member Posts: 1,448

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

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Comments

  • Srashedb
    Srashedb Member Posts: 482
    Radiation?

    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
    Blueraidermike Member Posts: 25
    Srashedb said:

    Radiation?

    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

    Process for Stage 4 - Just my opinion

    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
    dhs1963 Member Posts: 513
    Scans....why not MRI?

    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.

  • dhs1963
    dhs1963 Member Posts: 513
    Srashedb said:

    Radiation?

    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

    Radiation only works with bone mets

    Radiation only works for bone mets....

  • Footstomper
    Footstomper Member Posts: 1,237
    IL2

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

  • Srashedb
    Srashedb Member Posts: 482
    dhs1963 said:

    Radiation only works with bone mets

    Radiation only works for bone mets....

    Radiation

    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
    foxhd Member Posts: 3,181
    Srashedb said:

    Radiation

    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

    radiation

    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.

  • thaxter
    thaxter Member Posts: 124

    IL2

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

    IL-2 stats

    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.

  • sblairc
    sblairc Member Posts: 585
    Todd, I sent you a private message.

    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? 

  • Footstomper
    Footstomper Member Posts: 1,237
    thaxter said:

    IL-2 stats

    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.

    Maybe

    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.

  • Blueraidermike
    Blueraidermike Member Posts: 25
    sblairc said:

    Todd, I sent you a private message.

    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? 

    Art to treatment

    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
    Footstomper Member Posts: 1,237

    Art to treatment

    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.

     

     

    I was lucky

    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

  • Limelife50
    Limelife50 Member Posts: 476
    Okay

    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.

  • Blueraidermike
    Blueraidermike Member Posts: 25

    I was lucky

    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

    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

  • sblairc
    sblairc Member Posts: 585
    foxhd said:

    radiation

    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.

    Stereotactic Radio Surgery stimulates immune response

    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

  • sblairc
    sblairc Member Posts: 585
    foxhd said:

    radiation

    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.

    Radiation is INDEED making strides

    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"

  • foxhd
    foxhd Member Posts: 3,181

    Okay

    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.

    surgery?

    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.

  • sblairc
    sblairc Member Posts: 585
    To be clear: You have one doctor basically guessing?

    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
    Jojo61 Member Posts: 1,309 Member
    sblairc said:

    To be clear: You have one doctor basically guessing?

    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. 

    I have to say I agree....and

    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?

  • Blueraidermike
    Blueraidermike Member Posts: 25
    foxhd said:

    surgery?

    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.

    Your right, some places are inoperable

    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.