Metastisized RCC

His_emmy · November 2007

My finace' was diagnosed with metatisized rcc in September. This was discovered when he broke his right femur in a fall. In addition to the kidney tumor,tumors found in his right and left femur and a small one in his arm. The tumors in both legs were removed and the bones repaired and rods put in. He had embolizations to the tumors in his leg bones. He is doing 3 weeks of radiation and then will be on sutent. No one will give a prognosis, but from what I read on the net this is very very bad. The thing is, he is reacting very well to everything and we both have the oddest feeling that he is going to surprise everyone and survive a longer period of time. We may be in denial, I suppose, but my late husband died from non-Hodgkins lymphoma 5 years ago so I am not a newbie to all of this. Has anyone know anyone that survived more than one or two years with metastisized RCC? I understand the doctors don't want to create a "self fufilling prophecy" by giving a time frame, but we would like to know what we read on the net is not carved in stone. Thanks!

Unknown · November 2007

This comment has been removed by the Moderator

adriaranguren · December 2007

Hello! I am sorry to hear about your fiance.Just wanted to tell you that faith is the only thing that keeps us going. My dad was diagnosed with methastatic RCC in Nov 2005 and he is still alive. Thankfully he has been okay these two years, he has been taking Nexavar (sorafenib) all this time. Of course secondary effects bothered him a lot, but other than that he has been doing fine.When he was diagnosed with this two years ago he had his kidney removed, one of his vertebrae removed and was treating his lung tumors. Unfortunately (on X-mas day) we found out that new tumors appeared in his liver. Let´s see what comes next. Hope this gives you some hope!

janepjohns · January 2009

I was diagnosed with
I was diagnosed with metastized RCC in Dec. 2004. I had a 3.5 cm met to my left clavicle. I underwent two surgeries, a nephrectomy and resection of my clavicle/tumor. I recieved radiation to my shoulder following surgery and 24 months of interferon treatment. I am now a 4 year survivor of metastized RCC. I have had no reoccurances. My most recent check up was last week and I continue to show no signs cancer. Yes, the statistics are grim, but it is not hopeless. I am healthy and intend to stay that way!!

mythago · February 2009

Metastisized RCC
Hello His_emmy. Please don't look at the statistics - they are dismal and just as there are percentages of those that die, there are those that beat the odds. I realized this in my own search for answers having been diagnosed in October 2008. Everyone suggested I stop looking at statistics and start researching other areas that would help me be in the category of those that beat the odds. With all the new research in this area and advances they are making - everyday counts. There is a website...www.cancerguide.org. It was created by Steve Dunn, also a RCC patient and I highly suggest you read his story. It is inspirational as is his website. He created the site to help others who have questions such as yours and loads of research and information that might prove helpful to you. I hope this helps you on your journey.

tbado · February 2009

time frame
My opinion is when the good Lord is ready he will call.
I have been diagnosed since Oct. 2003 with 2 dozen met bilaterally
on the lungs. Been through many treatments -many were no go -
Sutent keep it in check for a year, and Toricel has produced
major shrinkage. I figure thats not bad starting from a gold
standard treatment with only 20% chance of slowing the crap down
in '03. A good mental attitude helps!

blbelzer · April 2009

tbado said:
time frame
My opinion is when the good Lord is ready he will call.
I have been diagnosed since Oct. 2003 with 2 dozen met bilaterally
on the lungs. Been through many treatments -many were no go -
Sutent keep it in check for a year, and Toricel has produced
major shrinkage. I figure thats not bad starting from a gold
standard treatment with only 20% chance of slowing the crap down
in '03. A good mental attitude helps!

Beginning Treatment
I was diagnosed with mestastized RCC in January. I've had radiation surgery on my spine, removal of the kidney and two hellish weeks on Interferon. Thankfully,I have some good friends who could see I needed to switch medictaions and we were able to have that done yesterday.

I was taken completely by surprise by the side effects of the Intrferon. I became so weak, I could hardly breath and I am now back the hospital just trying to regain some strength. I will now be on a regimen of Avastin and Temsirolimus. Has anyone experienced this combination? I'm awfully leary after my experience with Interferon and would love to hear some promising information.

Also, can you share with me your experiences with treat - degree of fatigue, activty, etc? I live alone and was not at all prepared for the degree of care I should have had while on Interferon. When I go home this time, I want to be sure I have things in place to take good care of myself.

I am so glad to have found this message board and hope to find inspiration and support.

Thanks!

bangormom · April 2009

blbelzer said:
Beginning Treatment
I was diagnosed with mestastized RCC in January. I've had radiation surgery on my spine, removal of the kidney and two hellish weeks on Interferon. Thankfully,I have some good friends who could see I needed to switch medictaions and we were able to have that done yesterday.

I was taken completely by surprise by the side effects of the Intrferon. I became so weak, I could hardly breath and I am now back the hospital just trying to regain some strength. I will now be on a regimen of Avastin and Temsirolimus. Has anyone experienced this combination? I'm awfully leary after my experience with Interferon and would love to hear some promising information.

Also, can you share with me your experiences with treat - degree of fatigue, activty, etc? I live alone and was not at all prepared for the degree of care I should have had while on Interferon. When I go home this time, I want to be sure I have things in place to take good care of myself.

I am so glad to have found this message board and hope to find inspiration and support.

Thanks!

Hi Blbelzer,
Sorry that you
Hi Blbelzer,

Sorry that you have to be here, but it is what it is. I was dx'd officialy in august of 08, Avastin I heard is mild compared to some of the other treatments. Tensuriolimus, I can't really help you with as I am allergic to it. How ever try to remember that not everyone gets all the side effects, and all meds act differently on everyone. I want to give you a web site that may be more helpful, please go to Kidney cancer association.org
there are alot of people on there that are going or have been through the treatment you are asking about. Do you know what cell type you have? There are many different subtypes such as clear cell, papillary types I and II, chromaphone, and sarcomatiod features.

I am papillary type II, and that limits my options as thing like HDL2 is the only one with a chance of a cure, the side effects are real rough, but like I said it is the only one that has a chance to cure it. I can't do it because it does not work on my cell type.

The second thing I want to tell you, you need a doctor who is speacilist in rcc. Most of the regular oncoligist's don't see rcc that often and are not up to date with the latest treatments. The kidney cancer association would be able to help you with that. Knowledge is power with this beast, so arm yourself with as much info as you can that will be your best defense. I will pray for you as I can honestly say I know how you feel, as my cancer is in my liver, lungs spine, it even took over my lymphatic system. I get scared at times, but it is what it is, and the knowledge that I have gained through KCA and the ACOR mailing list has helped me alot. If there is anything that I can help you with I will try, I wish I had more info for you about your original question, but I have at least pointed you in a direction that should help.

Maryann

floralam88 · June 2009

bangormom said:
Hi Blbelzer,
Sorry that you
Hi Blbelzer,

Sorry that you have to be here, but it is what it is. I was dx'd officialy in august of 08, Avastin I heard is mild compared to some of the other treatments. Tensuriolimus, I can't really help you with as I am allergic to it. How ever try to remember that not everyone gets all the side effects, and all meds act differently on everyone. I want to give you a web site that may be more helpful, please go to Kidney cancer association.org
there are alot of people on there that are going or have been through the treatment you are asking about. Do you know what cell type you have? There are many different subtypes such as clear cell, papillary types I and II, chromaphone, and sarcomatiod features.

I am papillary type II, and that limits my options as thing like HDL2 is the only one with a chance of a cure, the side effects are real rough, but like I said it is the only one that has a chance to cure it. I can't do it because it does not work on my cell type.

The second thing I want to tell you, you need a doctor who is speacilist in rcc. Most of the regular oncoligist's don't see rcc that often and are not up to date with the latest treatments. The kidney cancer association would be able to help you with that. Knowledge is power with this beast, so arm yourself with as much info as you can that will be your best defense. I will pray for you as I can honestly say I know how you feel, as my cancer is in my liver, lungs spine, it even took over my lymphatic system. I get scared at times, but it is what it is, and the knowledge that I have gained through KCA and the ACOR mailing list has helped me alot. If there is anything that I can help you with I will try, I wish I had more info for you about your original question, but I have at least pointed you in a direction that should help.

Maryann

kidney cancer
Hi Maryann,

Do the Oncologist have you to do the the biopsy before givin you medication treatment?
My mom undergo bone and liver biopsy, and it 's shown no tumor identified in the bone,
and on the liver, they see lesion on the MRI and pet Ct. but on the biopsy, it showed dead cell.
My mom has the bone density test before, it said she has Osteporosis. But my mom didn't feel
any severe pain like some people describe if one was diagnose with cancer. I am just wondering if my mom had kidney cancer, how come on her blood test, it showed her KIDNEY FUNCTION was very normal.

Hope if anyone has any information, experience, systoms of kidney cancer.

janepjohns · August 2009

I was diagnosed with
An update. As of today I am 4 years 10 months cancer free after a diagnosis of stage IV metastized kidney cancer. Yes, the stats are horrible, but check out Steve Dunn's website for a new perspective (and HOPE). I am alive and healthy...backpacked through the Montana Wilderness 35 miles last week at the age of 54. There is hope and there is life after cancer, in spite of those stats.

GODHASTHEFINALREPORT · September 2009

Your Story?
Do you have any advice for my family? The doctors diagnosed him Stage IV RCC and they said that there is nothing that they can do but at the same time they want to do a Biopsy??? Can you tell me what your prognosis was?

GODHASTHEFINALREPORT · September 2009

janepjohns said:
I was diagnosed with
An update. As of today I am 4 years 10 months cancer free after a diagnosis of stage IV metastized kidney cancer. Yes, the stats are horrible, but check out Steve Dunn's website for a new perspective (and HOPE). I am alive and healthy...backpacked through the Montana Wilderness 35 miles last week at the age of 54. There is hope and there is life after cancer, in spite of those stats.

God is soooo good!!!!
God bless you!!

ddt · September 2009

blbelzer said:
Beginning Treatment
I was diagnosed with mestastized RCC in January. I've had radiation surgery on my spine, removal of the kidney and two hellish weeks on Interferon. Thankfully,I have some good friends who could see I needed to switch medictaions and we were able to have that done yesterday.

I was taken completely by surprise by the side effects of the Intrferon. I became so weak, I could hardly breath and I am now back the hospital just trying to regain some strength. I will now be on a regimen of Avastin and Temsirolimus. Has anyone experienced this combination? I'm awfully leary after my experience with Interferon and would love to hear some promising information.

Also, can you share with me your experiences with treat - degree of fatigue, activty, etc? I live alone and was not at all prepared for the degree of care I should have had while on Interferon. When I go home this time, I want to be sure I have things in place to take good care of myself.

I am so glad to have found this message board and hope to find inspiration and support.

Thanks!

Find a new doctor
I don't know why your doctor would start you on interferon. That is old school. Find a new doctor.

ddt · September 2009

GODHASTHEFINALREPORT said:
Your Story?
Do you have any advice for my family? The doctors diagnosed him Stage IV RCC and they said that there is nothing that they can do but at the same time they want to do a Biopsy??? Can you tell me what your prognosis was?

Find a specialist. Go to MD
Find a specialist. Go to MD Anderson or somewhere where they specialize only in RCC. There is plenty they can do. Most RCC doctors do not do biopsies but some do. There is a chance of spreading the disease with a biopsy I guess is why some don't. There are new drugs on the scene for this disease at an amazing rate in the past two years. Do not give up hope and fight! The side effects sound terrible but aren't always as bad as they seem. The key is to stay alive and follow the right path so that you are able to get into a clinical trial if you need to. You need guidance by a specialist and they are only at the big cancer centers.

naniz · September 2009

GODHASTHEFINALREPORT said:
Your Story?
Do you have any advice for my family? The doctors diagnosed him Stage IV RCC and they said that there is nothing that they can do but at the same time they want to do a Biopsy??? Can you tell me what your prognosis was?

*

*

garrettnyc · November 2011

blbelzer said:
Beginning Treatment
I was diagnosed with mestastized RCC in January. I've had radiation surgery on my spine, removal of the kidney and two hellish weeks on Interferon. Thankfully,I have some good friends who could see I needed to switch medictaions and we were able to have that done yesterday.

I was taken completely by surprise by the side effects of the Intrferon. I became so weak, I could hardly breath and I am now back the hospital just trying to regain some strength. I will now be on a regimen of Avastin and Temsirolimus. Has anyone experienced this combination? I'm awfully leary after my experience with Interferon and would love to hear some promising information.

Also, can you share with me your experiences with treat - degree of fatigue, activty, etc? I live alone and was not at all prepared for the degree of care I should have had while on Interferon. When I go home this time, I want to be sure I have things in place to take good care of myself.

I am so glad to have found this message board and hope to find inspiration and support.

Thanks!

radiation on spine
hello.

My mother has kidney cancer. A very large mass was removed (along with the kidney) in June, and just this month we discovered lesions on 2 vertebrae (L3 & L5) and many spots in her liver. She is in the hospital now and we are trying to get a plan for treatment together asap. She was given radiation therapy on the vertebrae today. What was your experience with this? Did it help? She is in a great deal of pain and we are really hoping this will relieve it.

This is frightening and would love to hear from you and get your perspective on things. Many many thanks

garrett

BG · November 2011

garrettnyc said:
radiation on spine
hello.

My mother has kidney cancer. A very large mass was removed (along with the kidney) in June, and just this month we discovered lesions on 2 vertebrae (L3 & L5) and many spots in her liver. She is in the hospital now and we are trying to get a plan for treatment together asap. She was given radiation therapy on the vertebrae today. What was your experience with this? Did it help? She is in a great deal of pain and we are really hoping this will relieve it.

This is frightening and would love to hear from you and get your perspective on things. Many many thanks

garrett

Stereotactic Body Radiotherapy in the Management of Painful Bone
Hello Garrettnyc,

Stereotactic Body Radiotherapy can be used for the Management of Painful Bone Metastases. If there is bone weakening there are also ways in which the spine can fused to provide continued support. I've pulled this information from another site:

Every RCC patient with even one bone met needs to read this-many oncologists avoid prescribing these drugs because of the ONJ law suit risk-but I can tell you SRE's are immensely disabling also. You need to have this discussion with your physician if you haven't already.
Easy and interesting read comparing denosumab and zometa:

http://cancergrace.org/cancer-treatments/2010/11/29/xgeva-denosumab-for-sres/

Factoid-if you have bone mets-use of Zometa can reduce your chance of a future SRE by HALF!.hat is huge. Denosumab may even be better. There is a 1-2% risk of ONJ.

http://www.us.zometa.com/health-care-professional/bone-metastases-and-zometa.jsp?site=PC000898&irmasrc=ZOMWB0147&source=01030

BG

lbinmsp · November 2011

Sorry
that you've been to this rodeo before - not exactly the happiest time!

I was originally diagnosed with RCC in 2001 - open radical nephrectomy with no mets anywhere. Five years later they found tumors in my right lung - right lower lobectomy and no further treatment. Five years later (current) I've got mets to the pancreas. I asked my doctors 'the question' - how long. They said they couldn't give me a time frame - some people don't last long even though the mets may be under control - others with far more advanced disease live way longer than anyone could ever have anticipated - it would be a guess at best. They said that a lot depends on the patient's attitude, the patients support system, and then general health. I mean, I know what I'm going to die from - but not when. That's entirely up to God and he hasn't circled any dates in my calendar that I can see. The only date I've got circled is a cruise to Alaska next May!

As for what you read on the net - those are just numbers - statistics - take x number of patients with disease y - watch them for 5 years and see who's still around - and come up with a number. Phooey (my scientific term)! I will keep on keeping on until I can't.

Good luck to you both! And please continue to post and keep us updated!

Liz

resistance2 · July 2014

lbinmsp said:
Sorry
that you've been to this rodeo before - not exactly the happiest time!

I was originally diagnosed with RCC in 2001 - open radical nephrectomy with no mets anywhere. Five years later they found tumors in my right lung - right lower lobectomy and no further treatment. Five years later (current) I've got mets to the pancreas. I asked my doctors 'the question' - how long. They said they couldn't give me a time frame - some people don't last long even though the mets may be under control - others with far more advanced disease live way longer than anyone could ever have anticipated - it would be a guess at best. They said that a lot depends on the patient's attitude, the patients support system, and then general health. I mean, I know what I'm going to die from - but not when. That's entirely up to God and he hasn't circled any dates in my calendar that I can see. The only date I've got circled is a cruise to Alaska next May!

As for what you read on the net - those are just numbers - statistics - take x number of patients with disease y - watch them for 5 years and see who's still around - and come up with a number. Phooey (my scientific term)! I will keep on keeping on until I can't.

Good luck to you both! And please continue to post and keep us updated!

Liz

Hi

Read your post and wanted to follow up on you, hope you are feeling great and sutent is working for you !!

GSRon · August 2014

resistance2 said:
Hi
Read your post and wanted to follow up on you, hope you are feeling great and sutent is working for you !!

old post

Hi resistance2 You have replied to a very old post. The last poster has not been here this year. FYI. You may wish to add your info to your profile and start a new thread.

Ron

resistance2 · August 2014

GSRon said:
old post
Hi resistance2 You have replied to a very old post. The last poster has not been here this year. FYI. You may wish to add your info to your profile and start a new thread.

Ron

Hi Ron,
Sure, updated my

Hi Ron,

Sure, updated my profile.

Metastisized RCC

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