Stage 4 MRCC

NanoSecond

vccortes713 said:

Thank you NanoSecond. How

Thank you NanoSecond. How about the fact that the big tumor and the kidney that was removed from me? Can we not consider it as a big factor in determining my overall health condition?  Can we say that I am in a better health situation now because 95% of the cancer was gone although there is a progression in the metastasis? Would you say I will liveuch longer than when the tumor was with me? Thanks again.....

Tumor burden reduced

Removing your primary tumor has reduced your overall tumor burden.  This is important when or if you need to undergo additional therapies.

That primary tumor had been shedding cells all along that could eventually become metastases - so removing it does not necessary translate into no future mets.  Those cells can remain dormant and/or hidden for decades.  That is why routine CT-scans are essential.

Yes, you have greatly improved your chances of living longer by having the primary removed.  But by how much is unknown.  The primary tumor was not necessarily life threatening.  Metastases are generally what are life threatening.

foxhd

NanoSecond said:

Tumor burden reduced

Removing your primary tumor has reduced your overall tumor burden.  This is important when or if you need to undergo additional therapies.

That primary tumor had been shedding cells all along that could eventually become metastases - so removing it does not necessary translate into no future mets.  Those cells can remain dormant and/or hidden for decades.  That is why routine CT-scans are essential.

Yes, you have greatly improved your chances of living longer by having the primary removed.  But by how much is unknown.  The primary tumor was not necessarily life threatening.  Metastases are generally what are life threatening.

primary vs mets

Good explanations Nano.

vccortes713

foxhd said:

primary vs mets

Good explanations Nano.

I thought that I andy family

I thought that I and my family have already accepted the fact that there is no cure and that the only thing we can hope is  remission of the disease and that we should be thankful that I'm still alive.........I'ts been 9 months since.....Now I can totally understand what I am into....

 

 

How can I and my family totally accept and be ready to face the fact that ultimately sooner or later I will passed away? ...  ......That we won't see each other again?....

 

I don't want to die yet. Nobody does. I still want to see and watch my children grow and have their own family. I don't want to leave my wife alone and want to be with her much more longer if not foreever.....

 

How can we find that "Peace"so that   I and my love ones will be ready when the time comes....That everything will still be alright even without me? ........The physical trauma can sometimes still be tolerated.....But the emotional trauma, anxiety and fear is most of the time unbearable that even a strong belief, faith and love from God is still not enough to ease the burden and releives the pain the heart and mind feels.........

NanoSecond

vccortes713 said:

I thought that I andy family

I thought that I and my family have already accepted the fact that there is no cure and that the only thing we can hope is  remission of the disease and that we should be thankful that I'm still alive.........I'ts been 9 months since.....Now I can totally understand what I am into....

 

 

How can I and my family totally accept and be ready to face the fact that ultimately sooner or later I will passed away? ...  ......That we won't see each other again?....

 

I don't want to die yet. Nobody does. I still want to see and watch my children grow and have their own family. I don't want to leave my wife alone and want to be with her much more longer if not foreever.....

 

How can we find that "Peace"so that   I and my love ones will be ready when the time comes....That everything will still be alright even without me? ........The physical trauma can sometimes still be tolerated.....But the emotional trauma, anxiety and fear is most of the time unbearable that even a strong belief, faith and love from God is still not enough to ease the burden and releives the pain the heart and mind feels.........

Well this is the most

Well this is the most essential question, is it not?  But since you have asked, and at the risk of stepping well outside the bounds of this website, credible science, and effective medicine, consider this:

"Even while living safely between emergencies, most of us feel a wide range of painful emotions on a daily basis.  When you wake up in the morning, are you filled with joy? How do you feel at work or when looking in the mirror? How satisfied are you with what you have accomplished in life? How much of your time with your family is spent surrendered to love and gratitude, and how much is spent just struggling to be happy in one another's company? Even for extraordinarily lucky people, life is difficult. And when we look at what makes it so, we see that we are all prisoners of our thoughts.

And there is death, which defeats everyone. Most people seem to believe that we have only two ways to think about death: We can fear it and do our best to ignore it, or we can deny that it is real. The first strategy leads to a life of conventional wordliness and distraction - we merely strive for pleasure and success and do our best to keep the reality of death out of view.  The second strategy is the province of religion, which assures us that death is but a doorway to another world and that the most important opportunities in life occur after the lifetime of the body. But there is another path, and it seems the only one compatible with intellectual honesty. That path is the subject of this book..."  - From "Waking Up" by Sam Harris

jason.2835

vccortes713 said:

I don't know if my oncologist

I don't know if my oncologist is telling me the truth or He just doesn't want me to worry? I had to stop Sutent 1 month before my right radical nephrectomy which was last Sept. 18, 2014 and until now. So it's been 2 1/2 months without Sutent but I'm taking Sutent again next week.....I just had one and only dose of Radiation Therapy for the ribs this morning..............This is the result of my latest CT scan and I don't know how bad this is. I'm hoping somebody may be able to interpret this for me.......

 

 

CT Scan Results for the Chest

 

There are no pleural or pericardial effusions. There are several enhancing posterior mediastinal lymp nodes measuring up to 1.5cm in diameter. these have increase in size since prior study. there are no enlarge axillary, supraclavicular or hilar lymp nodes. There is an enlarged right internal mammary lymph node measuring  7mm. This has developed in the interim. there has been progression of pleural nodularity along the right posterior inferior hermothorax.

 

The central airways are patent. There are multiple pulmonary nodules and subpleural nodules scattered througout the right lung. Pre existing nodules have all increase in size. The findings would be compatible with pulmonary metastatic disease. The largest nodule in the right lung is identified within the right lower lower lobe measuring 2.2cm. There is

a new tiny 2 mm nodule in the left upper lobe anteriorly at the level of the aortic arc on image 35. Several tiny new nodules are also identified scattered throughout the left lung. No other pulmonary abnormality identified. 

 

There has been progression of lytic and soft tissue metastasis in the right posterior six rib. There is also been progression involvinf the soft tissue metastasis involving the right posterior eight rib. No definite new osseous normality is identified..

 

My oncologist said that I'm in a better position now that my big tumor is gone compared to before but I Ithink stopping Sutent because of the surgery allowed the further spread of cancer in my lungs to the ribs.....

 

Do I still have a chance that after taking Sutent again will reverse the spread just like before? Am I dying now? Pls help.....

New oncologist?

VC,

I went back and caught up with this post, and what I keep saying to myself is: It sounds to me like your communication with your oncologist regarding your situation is just dreadful.  I mean, I went online and looked up a lot of information, but at the end of the day every single person is different and what is a "death sentence" for one person may, in fact, be a 10 year survival for another.  A GOOD oncologist will be able to tell what treatments you're responding to and come up with a plan of action that will work best for you... but it just doesn't sound like he/she is communicating their thinking with you at all. 

I've seen a couple remarks on here regarding the "one year to live, etc"... I agree that these days targeted therapies have come so far that these pronouncements are not really appropriate and that doctors should stop using them.  When one has Stage 4 cancer, one should get their affairs in order but that doesn't necessarily mean one should STOP FIGHTING.  Doctors don't need to tell someone "you have one year to live," because they don't really know if that's true anymore.  I think they probably know where you have one or two months, but a year out?  A lot can happen... Anyway, I'm ponificating.  

telephantasm

foxhd said:

Newbies

I know this is all new and scarey. But hang around awhile and you'll find that there is much to learn. Don't just ask questions but read past posts and how many of us have experienced  kidney cancer.

3 years ago this month I was given 6 months to live. And although I worked in health care, cancer was not in my data base of knowledge.

6 months after my nephrectomy and being told they "Got it all.", I was dealing with over 20 tumors. Lungs, nodes, liver,spine, pelvis, ribs.

I could have passed from being scared to death. So I saw another oncologist. Then another. And another. They all said the same thing. "Nothing we can do. Good luck to you."

I gave it one more shot. I was told, "We have a clinical trial that you may be interested in." Hell yeah. I became one of maybe 60 people in the country offered a chance to participate in the trial of the promising drug "MDX 1106." Now called nivolumab. I was in intense pain. Could barely walk by the end of 2011. The drug was infused every 3 weeks. Virtually no side effects.

By spring of 2012 I was weight lifting. Jogging 3 miles every other day. Golfing and riding my motorcycle. Need I mention that this is the end of 2014 and here I am typing this?

The biggest message that we deliver here is that you should always get another opinion. We are constantly amazed to find out how little most oncologists, or urologists know about kidney cancer. Much of this is because most information out there is old and out of date. You need a specialist. And none of this garbage about trusting your doctor, or believing that they know what is best, or that they said, "You don't need a second opinion."

You see, your future depends on you being your own advocate. I got lucky (so far). Not everyone does. But if my doctors hadn't told me that there was not anything they could do, I wouldn't have sought out more opinions. It is amazing that none of these other oncologists even knew about the trial drug that has saved my life.

Newbies

Foxhd,

new to message boards from Canada, and been doin a lot of readin too and getting a lot of new perspective from your posts. My father has just been diagnosed with metastatic RCC and the news has been tough to take in, still in a lil bit of shock. Just didn't think it would come down to this. Has no blood in the urine until they had to catherize him to remove fluid build up. He did have some issues with urination due to enlarged prostate. CT scan indicated to spread to lymphnodes  in abdomen and near the heart. Found a superficial mass on axillary lymphnodes which is being biopsied and currently awaiting results. Has 8 cm mass on right kidney but want to use targeted therapy first and the maybe remove mass from kidney. Will have to see what oncologist says I guess.  Everything I've read says spread to axillary lymphnodes is rare but urologist indicated to me it's possible. Hard to believe that it won't be cancer, with all the bad news we've been getting. Didn't indicate spread to bones, brain or lungs from what I was told. But  readin these message boards I take stock in a lot of success stories with the new treatments that are available for MRCC, it's not a death sentence. Seems to me they need to make some changes regarding  stage 4 RCC survival stats as I feel they don't apply any longer with the new drugs that are out there. The one size fits all with regards to Stg 4 RCC poor prognosis is a misnomer in my opinion, everyone is a different case, anything can happen. From what I've read Sutent has worked for many. I believe the new wonder drug is Nivolumab but only for clinical trials, at least here in Canada. So ya's maybe hearin me from time to time, venting or asking more questions. Thanks for hearin me out. Just trying to take it day by day. So as ya put it foxhd I'll b hangin around to learn and listen

foxhd

telephantasm said:

Newbies

Foxhd,

new to message boards from Canada, and been doin a lot of readin too and getting a lot of new perspective from your posts. My father has just been diagnosed with metastatic RCC and the news has been tough to take in, still in a lil bit of shock. Just didn't think it would come down to this. Has no blood in the urine until they had to catherize him to remove fluid build up. He did have some issues with urination due to enlarged prostate. CT scan indicated to spread to lymphnodes  in abdomen and near the heart. Found a superficial mass on axillary lymphnodes which is being biopsied and currently awaiting results. Has 8 cm mass on right kidney but want to use targeted therapy first and the maybe remove mass from kidney. Will have to see what oncologist says I guess.  Everything I've read says spread to axillary lymphnodes is rare but urologist indicated to me it's possible. Hard to believe that it won't be cancer, with all the bad news we've been getting. Didn't indicate spread to bones, brain or lungs from what I was told. But  readin these message boards I take stock in a lot of success stories with the new treatments that are available for MRCC, it's not a death sentence. Seems to me they need to make some changes regarding  stage 4 RCC survival stats as I feel they don't apply any longer with the new drugs that are out there. The one size fits all with regards to Stg 4 RCC poor prognosis is a misnomer in my opinion, everyone is a different case, anything can happen. From what I've read Sutent has worked for many. I believe the new wonder drug is Nivolumab but only for clinical trials, at least here in Canada. So ya's maybe hearin me from time to time, venting or asking more questions. Thanks for hearin me out. Just trying to take it day by day. So as ya put it foxhd I'll b hangin around to learn and listen

Welcome

Sorry you are here. Nivolumab is the new wonder drug for clear cell renal cell ca. It didn't have a name yet when I was in the trial. We were calling it the magic bullet. I think that I got bumped from the trial too quickly after 18 months. I started to show some growth in a met or two which disqualified me. But nearly 20 tumors were knocked out at that point. It may still be working along with the Il-2 I got after being bumped from the trial. It becomes,"Let's find out what the next scan shows." It's kind of how I live now. Scan to scan. Key word is live.

vccortes713

jason.2835 said:

New oncologist?

VC,

I went back and caught up with this post, and what I keep saying to myself is: It sounds to me like your communication with your oncologist regarding your situation is just dreadful.  I mean, I went online and looked up a lot of information, but at the end of the day every single person is different and what is a "death sentence" for one person may, in fact, be a 10 year survival for another.  A GOOD oncologist will be able to tell what treatments you're responding to and come up with a plan of action that will work best for you... but it just doesn't sound like he/she is communicating their thinking with you at all. 

I've seen a couple remarks on here regarding the "one year to live, etc"... I agree that these days targeted therapies have come so far that these pronouncements are not really appropriate and that doctors should stop using them.  When one has Stage 4 cancer, one should get their affairs in order but that doesn't necessarily mean one should STOP FIGHTING.  Doctors don't need to tell someone "you have one year to live," because they don't really know if that's true anymore.  I think they probably know where you have one or two months, but a year out?  A lot can happen... Anyway, I'm ponificating.  

Well in fairness to the team

Well in fairness to the team of doctors and my oncologist it seems that they are doing well with regards to the treatment they've been giving me.... They were able to shrink the tumor and successfully performed the right radical nephrectomy without complications. I also didn't mention that it was me who pushed them to tell me in their opinion about my life expectancy in which at first they were so very hesitant. I rather want to know an estimate on how much longer I will live than knowing nothing at all....(everybody is different)........I am thankful because I was able to get half of my life insurance in advance (accidentally i did not know that if you've been diagnose with terminal illness and your life expectancy is less than two years, you get half of your life insurance tax free), bought my funeral including 4 plots, my cascket, thombstone in place and my funeral services ready to go anytime, did my last will and testament etc. - all in place already.........I am very thankful to my doctors, surgeon, nurses and my oncologist and to this wonderful Country..... Everything is free - hospitalization, specialist, laboratories, medicine and not a single cent on my Sutent......It's like little paradise in hell! Lol.....This monday they are putting me back on Sutent and I am confident that I will be fine!.......Thanks.....I will update everybody from time to time.....

telephantasm

foxhd said:

Welcome

Sorry you are here. Nivolumab is the new wonder drug for clear cell renal cell ca. It didn't have a name yet when I was in the trial. We were calling it the magic bullet. I think that I got bumped from the trial too quickly after 18 months. I started to show some growth in a met or two which disqualified me. But nearly 20 tumors were knocked out at that point. It may still be working along with the Il-2 I got after being bumped from the trial. It becomes,"Let's find out what the next scan shows." It's kind of how I live now. Scan to scan. Key word is live.

Thanks

Tx Foxhd, appreciate the words of wisdom. I'll b curious to hear what the oncologist's plan is with regards to treatment for my father.  Not sure if Nivolumab will b available,  maybe only by trial.  Also certain cancer drugs are not covered by regular insurance plan in Canada, it varies from province to province. must be tough livin scan to scan .. But as you've said u adjust, what else can ya do

acuellar75

nivolumab

My mother has been on sutent for mets of RCC in lungs and liver, she had sutent before prior to surgery for a large met tumor by the adrenal gland 3 years ago. Her original kidney tumor was removed 15 years ago and had 10+ years of remission.

When mets came back, we've requested to enroll in the NIVOLUMAB (OPDIVO) expanded program. She had already 2 letters stating that they have accepted the request, acknowledging that my mother is a good candiadate for this new therapy. As my mother was preparing for the new CT scan and switch from sutent to nivolumab, once again we received a letter rejecting the approval. Our oncologist in UCSD San Diego is in shock with these illogical management. Her CT scan came back today with new met on the spine, making the situation more URGENT to receive nivolumab, since sutent seems to be only stopping progession in old mets but not new ones. 

Any recommendations on how to deal with a two approvals followed by two denials on getting access to nivolumab? My mother is not a candidate for clinical trials since she had breast cancer before, and expanded access program is our only means.

Thank you,

Adriana

todd121

acuellar75 said:

nivolumab

My mother has been on sutent for mets of RCC in lungs and liver, she had sutent before prior to surgery for a large met tumor by the adrenal gland 3 years ago. Her original kidney tumor was removed 15 years ago and had 10+ years of remission.

When mets came back, we've requested to enroll in the NIVOLUMAB (OPDIVO) expanded program. She had already 2 letters stating that they have accepted the request, acknowledging that my mother is a good candiadate for this new therapy. As my mother was preparing for the new CT scan and switch from sutent to nivolumab, once again we received a letter rejecting the approval. Our oncologist in UCSD San Diego is in shock with these illogical management. Her CT scan came back today with new met on the spine, making the situation more URGENT to receive nivolumab, since sutent seems to be only stopping progession in old mets but not new ones. 

Any recommendations on how to deal with a two approvals followed by two denials on getting access to nivolumab? My mother is not a candidate for clinical trials since she had breast cancer before, and expanded access program is our only means.

Thank you,

Adriana

Nivolumab

Maybe I'm confused, but I thought this drug is already FDA approved? Is it not? It may not be for RCC, but it certainly is for other cancers. If it is, your oncologist should be able to prescribe it off label. There may be issues getting the insurance company to pay for it if you're not part of a trial, but they might. Just because the doctor is using a drug off label, doesn't mean the insurance company won't pay for it.

Has the oncologist refused to prescribe it?

Mets on spine are often treated with radiation. Many people here have had that treatment.

I think there is a trial that is using Nivolumab and Inlyta together. I know someone who recently enrolled in it. If the breast cancer is long enough ago, it might not keep her out of all trials. Each trial has different requirements. It's worth having a look.

Is the doc you're seeing a medical oncologist seeing many patients with RCC? If not, I'd find one.

Best wishes,

Todd

acuellar75

todd121 said:

Nivolumab

Maybe I'm confused, but I thought this drug is already FDA approved? Is it not? It may not be for RCC, but it certainly is for other cancers. If it is, your oncologist should be able to prescribe it off label. There may be issues getting the insurance company to pay for it if you're not part of a trial, but they might. Just because the doctor is using a drug off label, doesn't mean the insurance company won't pay for it.

Has the oncologist refused to prescribe it?

Mets on spine are often treated with radiation. Many people here have had that treatment.

I think there is a trial that is using Nivolumab and Inlyta together. I know someone who recently enrolled in it. If the breast cancer is long enough ago, it might not keep her out of all trials. Each trial has different requirements. It's worth having a look.

Is the doc you're seeing a medical oncologist seeing many patients with RCC? If not, I'd find one.

Best wishes,

Todd

Nivolumab

Hi Todd,

Thank you so much for your response. Our oncologist primarily treats patients with RCC, I think he was part of the research team for nivolumab. He prescribed it but we are trying to get coverage from the insurance company and this is what has been happening, my mother has medicare and PPO. This treatment is approved for melanoma and lung cancer, but is waiting for approval for RCC. Our oncologist mentioned phase III has been completed and should hear an answer sometime this year. We'll look into the new trials, my mom's breast cancer was 3+ years ago, this is how they found the new rcc tumor on the adrenal. 

Glad to hear about radiation treatment, I'll look into people's experiences here since my mother was refered to a radiologist and will continue with sutent afterwards. 

Thank you again, all best wishes to you too.

Adriana

todd121

acuellar75 said:

Nivolumab

Hi Todd,

Thank you so much for your response. Our oncologist primarily treats patients with RCC, I think he was part of the research team for nivolumab. He prescribed it but we are trying to get coverage from the insurance company and this is what has been happening, my mother has medicare and PPO. This treatment is approved for melanoma and lung cancer, but is waiting for approval for RCC. Our oncologist mentioned phase III has been completed and should hear an answer sometime this year. We'll look into the new trials, my mom's breast cancer was 3+ years ago, this is how they found the new rcc tumor on the adrenal. 

Glad to hear about radiation treatment, I'll look into people's experiences here since my mother was refered to a radiologist and will continue with sutent afterwards. 

Thank you again, all best wishes to you too.

Adriana

Nivolumab + Inlyta

I have a friend that just entered a trial at Cedars Sinai with Dr. Figlin that is using the above combination. At least that's what I understand she said. I just saw her yesterday.

I hope your mom gets treatment that works for her. It sounds like she's with a good doctor.

Can you tell me the doctor's name and hospital? I'm always looking for more resources in case I want another opinion. I'm in south Orange County, so a trip to SD isn't out of the question. I'm currently seeing Dr. Pal at City of Hope.

Todd

acuellar75

todd121 said:

Nivolumab + Inlyta

I have a friend that just entered a trial at Cedars Sinai with Dr. Figlin that is using the above combination. At least that's what I understand she said. I just saw her yesterday.

I hope your mom gets treatment that works for her. It sounds like she's with a good doctor.

Can you tell me the doctor's name and hospital? I'm always looking for more resources in case I want another opinion. I'm in south Orange County, so a trip to SD isn't out of the question. I'm currently seeing Dr. Pal at City of Hope.

Todd

nivolumab

Hi Todd,

His name is Dr. Millard from UCSD, he is truly exceptional and expert in the field, and he is also a very caring doctor. 

Thanks for your feedback and I wish all the best for you too.

Adriana

impeccablebeats

mRCC extensive metastases to spine, pelvis bones, lungs

My father has stage 4 RCC (class 4, with sarcomatoid and rhabdoid), which had metastasized aggressively to his spine (4 mets), pelvis bones (extensive), and lungs.  He just started taking Sutent for a few days.  Does Sutent work in treating metastases in the bones and particularily spines?  He is recommended to go in for radiation, but is that only for pain management?  Does he have more hope on immune therapy drug like Opdivo?  This nivolumab is so new that it is not even in the market yet, but should he switch to it even if we dont know if Sutent will work?  will the radiation therpay he will be getting render these PD1/PDL1 drug ineffective? Please help, I hurts so much to see him in agony.

Footstomper

impeccablebeats said:

mRCC extensive metastases to spine, pelvis bones, lungs

My father has stage 4 RCC (class 4, with sarcomatoid and rhabdoid), which had metastasized aggressively to his spine (4 mets), pelvis bones (extensive), and lungs.  He just started taking Sutent for a few days.  Does Sutent work in treating metastases in the bones and particularily spines?  He is recommended to go in for radiation, but is that only for pain management?  Does he have more hope on immune therapy drug like Opdivo?  This nivolumab is so new that it is not even in the market yet, but should he switch to it even if we dont know if Sutent will work?  will the radiation therpay he will be getting render these PD1/PDL1 drug ineffective? Please help, I hurts so much to see him in agony.

Sutent

Sutent worked well for a while until the side effects grew too much to deal with. For some people it works for years.

NewDay

Footstomper said:

Sutent

Sutent worked well for a while until the side effects grew too much to deal with. For some people it works for years.

Opdivo OK after Sutent

I recommend that you also join another website at SmartPatients.com that has a lot of members on both Sutent and Opdivo, but to answer your question, taking Sutent will not preclude him from getting Opdivo later, at least in the U.S.  I don't know what country you are in.

Sarcomatoid and rhabdoid features indicate aggressive disease so it is important that he see a kidney cancer specialist if at all possible.

This is a great group of people, so keep coming here also, but there is a lot of info for Stage IV patients on SmartPatients.

Kathy