Husband Diagnosed with Kidney Cancer, Stage 4
Comments
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How is he now
This is the same exact thing that happened to my father. He had his scans done yesterday and we will know on 1/7/13 if its working. I am really praying that this treatment work for him. The only difference in the story is that my Father did not have his kidney remove. The onconlogist feel that he will be stronger with both kidneys. How is your husband doing now?
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Yes, how is John now?wall478t1 said:How is he now
This is the same exact thing that happened to my father. He had his scans done yesterday and we will know on 1/7/13 if its working. I am really praying that this treatment work for him. The only difference in the story is that my Father did not have his kidney remove. The onconlogist feel that he will be stronger with both kidneys. How is your husband doing now?
Welcome wall478t1 (with that pen-name it sounds as though you're a robot!). You will get a lot of help here so do ask all the questions you want to and we'll all try to help you to do the best for your Father.
Thank you also for posting on this thread - it's entertaining to re-visit the debut of the lovely Alice, who has become so much part of the (elegantly upholstered) furniture here and to see older posts by some of my favourite members who joined in on this thread which she started. A lot of water has flowed under the bridge since then and we're all a little older and, one hopes, a lot wiser from being on this forum. Now you've joined us you'll make some good friends here, where patients and caregivers (like you and Alice) are very much appreciated.
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I'm RealTexas_wedge said:Yes, how is John now?
Welcome wall478t1 (with that pen-name it sounds as though you're a robot!). You will get a lot of help here so do ask all the questions you want to and we'll all try to help you to do the best for your Father.
Thank you also for posting on this thread - it's entertaining to re-visit the debut of the lovely Alice, who has become so much part of the (elegantly upholstered) furniture here and to see older posts by some of my favourite members who joined in on this thread which she started. A lot of water has flowed under the bridge since then and we're all a little older and, one hopes, a lot wiser from being on this forum. Now you've joined us you'll make some good friends here, where patients and caregivers (like you and Alice) are very much appreciated.
Thank you so much. My father is so anxious to know if the treatment is working, he had me call today, but the nurse did not answer the phone, I hung up and did not leave a message. I notice no one ever said whether the treatment worked for them, I guess thats a good thing because you dont want those who waiting on results like my father to lose hope. I hope everyone is doing well as the continue to fight the ugly disease.
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John (one putt)wall478t1 said:I'm Real
Thank you so much. My father is so anxious to know if the treatment is working, he had me call today, but the nurse did not answer the phone, I hung up and did not leave a message. I notice no one ever said whether the treatment worked for them, I guess thats a good thing because you dont want those who waiting on results like my father to lose hope. I hope everyone is doing well as the continue to fight the ugly disease.
Keeping my fingers crossed for your dad. IL2 was tough on John and he did not achieve a partial or complete reduction from the IL2. However, as Tex has pointed out, there's increasing evidence on the positive latent effects of IL2, e.g., increases the likelihood of the success of subsequent treatments. (So even if he doesn't respond, the IL-2 may set him up to better respond to other treatments down the road.)
Right after the IL2, John entered a clinical trial at Hopkins of Nivolumab and Votrient and has achieved a total of 46% reduction in his tumor burden. He has another scan on the 16th of January; so we're hoping for continued progress or at least stabilization.
How has your dad tolerated the IL2? Side effects? How is his overall physical condition? Keep in mind that there are other treatments if IL2 is not a total success, though you,of course, want it to be. Tell us more about your dad's tumor grade, stage, etc. Knowledge is power and we all learn from each other.
Know we're in your and your dad's corner!
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My Father was have a 7cm massalice124 said:John (one putt)
Keeping my fingers crossed for your dad. IL2 was tough on John and he did not achieve a partial or complete reduction from the IL2. However, as Tex has pointed out, there's increasing evidence on the positive latent effects of IL2, e.g., increases the likelihood of the success of subsequent treatments. (So even if he doesn't respond, the IL-2 may set him up to better respond to other treatments down the road.)
Right after the IL2, John entered a clinical trial at Hopkins of Nivolumab and Votrient and has achieved a total of 46% reduction in his tumor burden. He has another scan on the 16th of January; so we're hoping for continued progress or at least stabilization.
How has your dad tolerated the IL2? Side effects? How is his overall physical condition? Keep in mind that there are other treatments if IL2 is not a total success, though you,of course, want it to be. Tell us more about your dad's tumor grade, stage, etc. Knowledge is power and we all learn from each other.
Know we're in your and your dad's corner!
My Father was have a 7cm mass on his right kidney and several cyst on his lungs. He was diagnose in Chicago, the urologist that he was referred to by his primary doctor wanted to immediately remove the kidney. We visited an oncologist in Chicago who stated it was not urgent that the kidney was removed. My father has had the same primary doctor for 14 years. My father had lost 60 pounds in a year of unexplained weight, so finally she did a CAT scan. I brought my father to a doctor in Louisiana where I stay for a second opinion. I had no knowledge of the IL2 treatment but the oncolongist gave us information on the treatment and said my father would be a perfect candidate. My father is 69 years old with no health problems except the cancer. My father is not on any meds for ANYTHING. To make a long story short, he has completed his second round of IL2. He recovered quick from the first round, but the second round is taking much longer for him to recover. After the second round, he had a lost of appetite. I called the doctor who provided a prescription. He have not quite got his strength and he gets tired really quickly just performing daily activities such as putting on clothes and walking. Its very hard to see someone go through this treatment, when I first saw my father go through the rigors, I went out the room and just cried. I know anything is possible and I believe that this treatment will give my father a great response. My mother was diagnosed with breast cancer 20 years ago, I was only 15, and now she is 20 years in with no NED.
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Your fatherwall478t1 said:My Father was have a 7cm mass
My Father was have a 7cm mass on his right kidney and several cyst on his lungs. He was diagnose in Chicago, the urologist that he was referred to by his primary doctor wanted to immediately remove the kidney. We visited an oncologist in Chicago who stated it was not urgent that the kidney was removed. My father has had the same primary doctor for 14 years. My father had lost 60 pounds in a year of unexplained weight, so finally she did a CAT scan. I brought my father to a doctor in Louisiana where I stay for a second opinion. I had no knowledge of the IL2 treatment but the oncolongist gave us information on the treatment and said my father would be a perfect candidate. My father is 69 years old with no health problems except the cancer. My father is not on any meds for ANYTHING. To make a long story short, he has completed his second round of IL2. He recovered quick from the first round, but the second round is taking much longer for him to recover. After the second round, he had a lost of appetite. I called the doctor who provided a prescription. He have not quite got his strength and he gets tired really quickly just performing daily activities such as putting on clothes and walking. Its very hard to see someone go through this treatment, when I first saw my father go through the rigors, I went out the room and just cried. I know anything is possible and I believe that this treatment will give my father a great response. My mother was diagnosed with breast cancer 20 years ago, I was only 15, and now she is 20 years in with no NED.
You are absolutely right; watching someone you love go through the IL2 is brutal. I know John lost his appetite too and actually started to have food phobias. In fact, he was so sickened by hospital food, he would eat nothing that had been served in the hospital for months afterwards, including eggs, tomato sauce, etc. He slowly got his appetite back and supplemented it with Ensure.
When you say your dad has several cysts on his lungs, does that mean his doctors do not believe they are related to his kidney cancer? When I first read your post you wrote cysts but my brain read "nodules" and I wondered why they would not remove the kidney if they thought it had metastisized to his lungs. Did they assign your dad a stage and grade? What area of the world are you from?
Keep your spirits up and those of your dad. That's a big part of this fight, being bigger and stronger than the cancer and keeping that kick butt spirit. You and your dad both sound like strong individuals; you're going to beat this one way or the other! Trust me.
P.S. One more thing. Don't go randomly googling and pulling up OLD info on kidney cancer. Most information out there is old and outdated and will scare the dickens out of you. I know because I did and became unnecessarily depressed and sad. So don't do it. Timely information can be gleaned through ACOR and sites like this one. Keep your thoughts and research focused on positive.
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IL2 did not work for my Dad,alice124 said:Your father
You are absolutely right; watching someone you love go through the IL2 is brutal. I know John lost his appetite too and actually started to have food phobias. In fact, he was so sickened by hospital food, he would eat nothing that had been served in the hospital for months afterwards, including eggs, tomato sauce, etc. He slowly got his appetite back and supplemented it with Ensure.
When you say your dad has several cysts on his lungs, does that mean his doctors do not believe they are related to his kidney cancer? When I first read your post you wrote cysts but my brain read "nodules" and I wondered why they would not remove the kidney if they thought it had metastisized to his lungs. Did they assign your dad a stage and grade? What area of the world are you from?
Keep your spirits up and those of your dad. That's a big part of this fight, being bigger and stronger than the cancer and keeping that kick butt spirit. You and your dad both sound like strong individuals; you're going to beat this one way or the other! Trust me.
P.S. One more thing. Don't go randomly googling and pulling up OLD info on kidney cancer. Most information out there is old and outdated and will scare the dickens out of you. I know because I did and became unnecessarily depressed and sad. So don't do it. Timely information can be gleaned through ACOR and sites like this one. Keep your thoughts and research focused on positive.
IL2 did not work for my Dad, but I'm not giving up hope. Its several nodules on both sides of his lungs that come from the kidney. This oncologist is strongly against removing the kidney. He said that removing the kidney is not going to help whats going on in his lungs. He said that my father blood work all came back good. The only way he would remove the kidney if my father was in pain, blood in stool, or blood work not normal. Do you know of anyone who have had the kidney removed and it cleard up the lungs? I live in Louisiana. What treatment is your husband taking now? My father will start a new treatment on the 15th and I'm praying it works.
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Decisionswall478t1 said:IL2 did not work for my Dad,
IL2 did not work for my Dad, but I'm not giving up hope. Its several nodules on both sides of his lungs that come from the kidney. This oncologist is strongly against removing the kidney. He said that removing the kidney is not going to help whats going on in his lungs. He said that my father blood work all came back good. The only way he would remove the kidney if my father was in pain, blood in stool, or blood work not normal. Do you know of anyone who have had the kidney removed and it cleard up the lungs? I live in Louisiana. What treatment is your husband taking now? My father will start a new treatment on the 15th and I'm praying it works.
We are patients or caregivers on this forum, not doctors. So, what I am about to say is only my thoughts, not an expert opinion.
Your Dad was unlikely to benefit from HD IL2 without having his kidney tumour and most or all of his kidney removed first. The experts talk about "reducing the tumour burden". The tumours will be putting a lot of strain on your Dad's immune system. If he can have his primary tumour (and part or all of his kidney) removed as soon as he is well enough recovered from the IL2, it will enable his immune system to cope better. That will probably not clear up the lung mets but it will improve his chances when those nodules are treated, whether that is by surgery, cryoablation or drugs.
Does your Dad have other problems that made the oncologist say he shouldn't have his kidney removed?
Alice and John - there are several new messages on KIDNEY_ONC by people who have had HD IL2 and are now on targeted therapies and reckon the IL2 has improved their response to the targeted therapy, even though IL2 seemed not to have worked for them. (There are also some on targeted therapies who hope it may be a precursor to a shot at HD IL2 - a scenario for which I continue to have a very slim hope).
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IL2wall478t1 said:IL2 did not work for my Dad,
IL2 did not work for my Dad, but I'm not giving up hope. Its several nodules on both sides of his lungs that come from the kidney. This oncologist is strongly against removing the kidney. He said that removing the kidney is not going to help whats going on in his lungs. He said that my father blood work all came back good. The only way he would remove the kidney if my father was in pain, blood in stool, or blood work not normal. Do you know of anyone who have had the kidney removed and it cleard up the lungs? I live in Louisiana. What treatment is your husband taking now? My father will start a new treatment on the 15th and I'm praying it works.
I'm sorry IL2 didn't work, but--to be honest--your dad's treatment has me confused. I agree with Tex regarding removal of the kidney.
My husband, John, has been a patient at Hopkins in Baltimore since being diagnosed. When his first CT scan revealed the tumor in his kidney and the nodules in his lungs, his doctors--Internist, Oncologist, Urologist--agreed that the first line of defense was to get the root tumor out (kidney tumor). Then start treatment. He had it out within two weeks.
Given you don't mention any medical condition that would prevent your dad from having that tumor removed, I don't understand his doctor's rationale. But, again, I'm no Doctor. But I'd strongly urge you to find out why hia doctor is not removing the kidney.
John had his kidney removed prior to the IL-2 and--like your dad--IL-2 was not successful. But we both believe that the latent effect of IL2 has made his repsonse Nivolumab/Votrient trial mroe positive.
I can remember when John's Urologist removed the kidney and came out to me in the waiting room, he said, "it went well; we believe we got it all." He said, "Stay positive. Sometimes when we get the root of the problem, good things happen." And both his Oncologist and Internist agreed, it was the right thing to do.
My understanding of kidney cancer is this. Kidney cancer is a tumor in the kidney. As it grows, so does the risk for it metastisizing (going to other organs) such as the lungs. So why leave it?
If I'm missing something here, please tell me. But I really don't understand the doctor's reluctance to remove the tumor.
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IL2wall478t1 said:IL2 did not work for my Dad,
IL2 did not work for my Dad, but I'm not giving up hope. Its several nodules on both sides of his lungs that come from the kidney. This oncologist is strongly against removing the kidney. He said that removing the kidney is not going to help whats going on in his lungs. He said that my father blood work all came back good. The only way he would remove the kidney if my father was in pain, blood in stool, or blood work not normal. Do you know of anyone who have had the kidney removed and it cleard up the lungs? I live in Louisiana. What treatment is your husband taking now? My father will start a new treatment on the 15th and I'm praying it works.
I'm sorry IL2 didn't work, but--to be honest--your dad's treatment has me confused. I agree with Tex regarding removal of the kidney/tumor.
John had his kidney removed prior to the IL-2 and--like your dad--IL-2 was not successful. But we both believe that the latent effect of IL2 has made his repsonse Nivolumab/Votrient trial mroe positive.
My husband, John, has been a patient at Hopkins in Baltimore since being diagnosed. When his first CT scan revealed the tumor in his kidney and the nodules in his lungs, his doctors--Internist, Oncologist, Urologist--agreed that the first line of defense was to get the root tumor out (kidney tumor). Then start treatment. He had it out within two weeks.
Given you don't mention any medical condition that would prevent your dad from having that tumor removed, I don't understand his doctor's rationale. But, again, I'm no Doctor. But I'd strongly urge you to find out why his doctor is not removing the tumor.
I can remember when John's Urologist removed the kidney and came out to me in the waiting room, he said, "it went well; we believe we got it all." He said, "Stay positive. Sometimes when we get the root of the problem, good things happen." And both his Oncologist and Internist agreed, it was the right thing to do.
My understanding of kidney cancer is this. Kidney cancer is a tumor in the kidney. As it grows, so does the risk for it metastisizing (going to other organs) such as the lungs. So why leave it?
If I'm missing something here, please tell me. But I really don't understand the doctor's reluctance to remove the tumor.
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The oncologist said that ifalice124 said:IL2
I'm sorry IL2 didn't work, but--to be honest--your dad's treatment has me confused. I agree with Tex regarding removal of the kidney/tumor.
John had his kidney removed prior to the IL-2 and--like your dad--IL-2 was not successful. But we both believe that the latent effect of IL2 has made his repsonse Nivolumab/Votrient trial mroe positive.
My husband, John, has been a patient at Hopkins in Baltimore since being diagnosed. When his first CT scan revealed the tumor in his kidney and the nodules in his lungs, his doctors--Internist, Oncologist, Urologist--agreed that the first line of defense was to get the root tumor out (kidney tumor). Then start treatment. He had it out within two weeks.
Given you don't mention any medical condition that would prevent your dad from having that tumor removed, I don't understand his doctor's rationale. But, again, I'm no Doctor. But I'd strongly urge you to find out why his doctor is not removing the tumor.
I can remember when John's Urologist removed the kidney and came out to me in the waiting room, he said, "it went well; we believe we got it all." He said, "Stay positive. Sometimes when we get the root of the problem, good things happen." And both his Oncologist and Internist agreed, it was the right thing to do.
My understanding of kidney cancer is this. Kidney cancer is a tumor in the kidney. As it grows, so does the risk for it metastisizing (going to other organs) such as the lungs. So why leave it?
If I'm missing something here, please tell me. But I really don't understand the doctor's reluctance to remove the tumor.
The oncologist said that if he is not having any complication from the tumor in the kidney, that he wouldn't recommend removing the kidney. My father is 69 years old, the oncologist stated that my father would be stronger with both kidneys going through the IL2 treatment. My father is not in any pain. The oncologist said in past experiences when the kidney is removed the disease spread faster. Its a roller coaster because my family is stuck between a rock and a hard place. It's be damn if you do and be damn if you don't. Maybe I should get a second opinion. I just want my father to live longer and not suffer.
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? spread faster?wall478t1 said:The oncologist said that if
The oncologist said that if he is not having any complication from the tumor in the kidney, that he wouldn't recommend removing the kidney. My father is 69 years old, the oncologist stated that my father would be stronger with both kidneys going through the IL2 treatment. My father is not in any pain. The oncologist said in past experiences when the kidney is removed the disease spread faster. Its a roller coaster because my family is stuck between a rock and a hard place. It's be damn if you do and be damn if you don't. Maybe I should get a second opinion. I just want my father to live longer and not suffer.
I don't think anyone here has ever heard such a thing as " cancer spreads faster with the primary tumor removed." That just sounds bizarre. However, I believe there are cases where once the primary tumor was removed, secondary tumors have disappeared without further treatment or they have more easily responded to drug treatment. I'll be corrected if I am wrong.
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Wall - I get what you arewall478t1 said:The oncologist said that if
The oncologist said that if he is not having any complication from the tumor in the kidney, that he wouldn't recommend removing the kidney. My father is 69 years old, the oncologist stated that my father would be stronger with both kidneys going through the IL2 treatment. My father is not in any pain. The oncologist said in past experiences when the kidney is removed the disease spread faster. Its a roller coaster because my family is stuck between a rock and a hard place. It's be damn if you do and be damn if you don't. Maybe I should get a second opinion. I just want my father to live longer and not suffer.
Wall - I get what you are trying to do, and I applaud it. I just don't understand the doctor. Does the doctor not consider the lung nodules a complication from the tumor in the kidney?
I know everyone is different, but I can say unequiviocally in John's experience that the IL-2 was much, much harder on him than the removal of the kidney.
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I don't understand either. Ialice124 said:Wall - I get what you are
Wall - I get what you are trying to do, and I applaud it. I just don't understand the doctor. Does the doctor not consider the lung nodules a complication from the tumor in the kidney?
I know everyone is different, but I can say unequiviocally in John's experience that the IL-2 was much, much harder on him than the removal of the kidney.
I don't understand either. I may need to go back to Chicago for second opinion. I dont understand why he is against the kidney being removed.
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Explanationwall478t1 said:I don't understand either. I
I don't understand either. I may need to go back to Chicago for second opinion. I dont understand why he is against the kidney being removed.
It certainly sounds as though you need both an understandable explanation and also a second opinion.
Fox, I have heard that idea, though I wouldn't know how to rapidly recover material on it. I believe the theory relates to changes in signalling systems when the mets are no longer 'under the control' of the primary tumour, or something like that. Do you have ready access to the opposite effect- of the immunse system, relieved of the main burden, seeing off the mets without further intervention?
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mRCC treatment optionswall478t1 said:The oncologist said that if
The oncologist said that if he is not having any complication from the tumor in the kidney, that he wouldn't recommend removing the kidney. My father is 69 years old, the oncologist stated that my father would be stronger with both kidneys going through the IL2 treatment. My father is not in any pain. The oncologist said in past experiences when the kidney is removed the disease spread faster. Its a roller coaster because my family is stuck between a rock and a hard place. It's be damn if you do and be damn if you don't. Maybe I should get a second opinion. I just want my father to live longer and not suffer.
You can follow the link of MDAnderson to read Advanced RCC treatment options:
http://www2.mdanderson.org/depts/oncolog/articles/12/5-may/5-12-compass.html
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MRCC treatment optionsjhsu said:mRCC treatment options
You can follow the link of MDAnderson to read Advanced RCC treatment options:
http://www2.mdanderson.org/depts/oncolog/articles/12/5-may/5-12-compass.html
Thank you for sharing. I had not read that.
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Please Help me break this downalice124 said:MRCC treatment options
Thank you for sharing. I had not read that.
The oncologist couldnt say it enough not to remove my father kidney. My father has so many lesions in his lungs the doctor said he didnt count them all. I kinda read between the lines when the doctor said "he didnt count them all". My sister Husband had cancer and went to MD Anderson, and they referred him back to this same oncologist here and said he was one of the best in Louisiana. I know he has his reasoning behind not removing the kidney.
Surgery
Among the first tasks in weighing a patient’s treatment options are to assess whether the disease is resect able and to determine the patient’s ability to tolerate surgery. Resectability depends largely on the location and distribution of primary and metastatic disease. Dr. Matin said that surgery to excise disease (nephrectomy and metastasectomy) is a reasonable consideration for a patient whose disease is primarily in the kidney with a small metastatic burden—perhaps a solitary metastatic lesion—or for a patient who presents with a solitary metastasis after a previous nephrectomy. Conversely, a patient with a small primary tumor and a larger metastatic burden—perhaps multifocal metastases—is less likely to benefit from surgery.
Additional considerations can help identify patients who will benefit from surgery and spare others from an ineffectual operation. The following risk factors—which were identified in a study led by Christopher Wood, M.D., a professor in and deputy chair of the Department of Urology—indicate that surgery is not likely to help, as survival outcomes are about the same for patients with more than three of these factors regardless of whether the patients do or do not undergo surgery:- symptoms from metastases,
- elevated lactate dehydrogenase (LDH) levels,
- metastases in the liver,
- retroperitoneal lymph node involvement,
- supradiaphragmatic lymph node involvement, or
- a locally advanced primary tumor.
For some patients, nephrectomy may be indicated to alleviate symptoms, notably pain and hematuria.
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Thank youjhsu said:mRCC treatment options
You can follow the link of MDAnderson to read Advanced RCC treatment options:
http://www2.mdanderson.org/depts/oncolog/articles/12/5-may/5-12-compass.html
Thank you so much for sharing this, it made me feel a little better.
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Kidney cancer and bone metsfoxhd said:Stage 4
You've come to the right place. Keep reading posts. Many of us understand the stage 4 concept well. As Iceman says, treatments have improved. Believe me. I know. Continue with your support. It IS harder for a loved one than the patient. Knowledge is power. Good luck.
FoxI WAS ASKED TO LOOK AT YOUR MAIL. Please help. Read my mail of january as i do not want to keep writing. it all over again. You have been very strong and have moved forward despite being told about. like expectancy.
I have a decision to make i have paralysis in my legs. This happened after a dose of Radiation.
I want to go on the drugs Avastin and tarceva but afraid the side effects will make my quality of life unbearible. Do i stop taking all drugs as the oncologist has said a matter of months or defeat him and take the drugs to survive longer than his predictions. Who can tell ypu how long you have.
I need news from someone who can give me that power to make the correct decision I pray and know that the Blessed Lord will help me.
I am 35
Please give me the information of the drugs you were on .MDX 1106. What are they and will i be able to get them in the uk. We do not seem to have a system like you people in America
A quick reply with useful information will be truly appreciated.
Thank you
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