CSN Login
Members Online: 15

stage 4 mestatic renal cell cancer

renal scare 57
Posts: 16
Joined: Feb 2012

i was diagonose with stage 4 renal cell dec 2011 had kidney removed jan 2012 started chemo with sutent 1 week ago i have it in both lungs they are sayin numerous nimerous numerous cells have it in the lymp nodes live and small cell tissue they say i have around 1 year or so but has anyone beat this cancer at this stage of the disease

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

Hang tough RS 57. I had my kidney removed last march. I am stage 4. I was informed that this march ( next month) might be my wordly exit. However, I just came back from playing golf at Myrtle beach for a week. Today I rode my Harley. Oh yeah. Also did some weight training and jogged 2 miles...I have lesions in my liver ,lungs, spine and pelvis.( that I know of). Have trust in your treatments and don't look back. I've already booked a couple motorcycle trips for the summer.Also bought new grips for my clubs. My treatment is different but we have to reley on the professionals to know what they are doing. I think less about beating this and more about living well.

jam66
Posts: 55
Joined: Jun 2011

Hi RS 57. I'm stage 4 as well. Had a nephrectomy in May of last year and my scan in September showed multiple lesions on the liver. I started sutent in October, and by January all tumors had disappeared! Sutent did the job. I also totally revamped my diet, and though not quite as active as foxhd here, I try to walk every day for a bit. :) I know how you feel, when I first learned of my diagnoses I scoured the web looking for survival stories. They are out there. Gerald White, author of "Three Months to Life" is just one example. You can order his book from Amazon...
Take care, Jennifer

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

RS 57 I'm guessing you're over the moon with the replies you've had from Fox and Jennifer. Fox is about to crash through the one year mark with at least 30 years to spare and Jennifer has done brilliantly on Sutent the actual drug that you've just started on! Both had extensive metastases, so your situation is no worse than theirs and probably a lot better than Fox's USED to be.

I'm at roughly the same phase as you (about a month ahead of you) but will only have my first follow-up scan next week when the news may not be too good - like the three of you, I'm stage 4 and I'm also grade 4 with the rare chromophobe form that's now mostly sarcomatoid - not what one would choose for oneself. However, I'm not too despondent, for the reasons below.

You may have already come across the inspirational stories at Steve Dunn's site

http://cancerguide.org/stories.html

Of those, one of the most relevant to us is that of Gerald White (whom Jennifer mentioned) who had a 20lb (they don't come any larger) kidney cancer. Getting on for 20 years ago he was predicted to live only a few months and is still going very strong all these years later.

Also on Steve Dunn's site there is the superb article by Stephen Jay Gould, at

http://cancerguide.org/median_not_msg.html

which is one of the most encouraging things I've read. It's also very important to remember that since all of the above the scene has changed a lot with all the new therapies that have been developed in the last 5 years or so.

Readers may be concerned to know that Jerry White has apparently been made a non-member by CSN. As soon as I learnt this I enquired why this has happened but I've had no reply so far from CSN. I think it was a very bad mistake by CSN. I have 2 guesses at the explanation. First, is that CSN very responsibly and wisely counsels us to have regard to our anonymity on these threads, which are open to be read by the whole world but Jerry has sacrificed his anonymity in his altruistic bid to offer additional help to everyone he can reach out to. This is similar to lawyer/client privilege - it's not mandatory - you can give it up if you choose to do so.

My other guess is that some wrong-headed person has deemed that Jerry is plugging his excellent book and CD on this forum for mercenary reasons. If so, this is due to ignorance of his motives. The man has spent substantial sums of his own personal fortune, made by his brilliance as an inventor (engineer and physicist) to bring hope, comfort and help to complement and bolster the medical treatment of cancer sufferers. I hope CSN will verify this and re-instate Jerry asap in the best interests of all of us so that he can extend his good works even further.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

CSN if you are reading this please bring Mr. White back, his insite and experience is of great value here.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Gary, I've not had a reply to my query to CSN about JWW's disappearance.

I can understand that they have limited personnel and time resources and this site is too valuable to compromise with attending to trivial questions. However, I feel Jerry's presence here is so invaluable that I wonder if you could add your voice to mine in asking what is going on? I'm not aware of anyone else being one of the "disappeared" and want him back asap. His profile has also gone but his postings (including on the Caregivers forum) are extant so far.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Done...I just sent CSN a request for reinstatement or explanation...we'll see.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks Gary, let's hope someone finds time to reply - maybe the CSN operates a triage system!

renal scare 57
Posts: 16
Joined: Feb 2012

im sorry my comment after rereading didnt make a lot of sense even to me lol i have stage 4 it is in liver, right lung totally filled with it, left lung partically filled and in lymp nodes and in soft tissue cell they told me i had less than 1 year. i had to come off sutent after 19 days tooo many side effects the doctor said we might try it again the 27 of march 2012 i already had the kidney removed i was just curious if anyone has this as bad as this and have they beat it

thanks to all who has responded to my statement before

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

I am a little curious about your treatment.Just to let you know there is another website that I am registered to ,there seems to be more than a few people on this website who are advanced RCC so if you want I will post it for you if you would like.I just have one more question for you,why hasn't your oncologist offered to start you on a drug called HD-IL 2 I have read where not every one responds to this drug but the ones that do have a really good response some even much better than people on sutent,I am no doctor just sharing what I have read good luck hope to hear from you.

renal scare 57
Posts: 16
Joined: Feb 2012

Limelife 50 what i was trying to say is they said i would not make it that i wasnt strong enough for the iv therpy and my best hope would be sutent.They said it would not cure it but but maybe buy me a few months. for as sick as i was for just those few days i seriously dont know if i want to try it again. Im suppose to make a decision by the 26 said maybe we culd drop the dose to 37.5 mg but if it is still gonna make the that sick for just a few months,Im just so confused. they said there was several several several nodules in both lungs some measuring up to 3.5 cin it is in the liver lymp nodes soft cell tissue. i look on here and see alot of good results and i just dont know what to do I ask the good Lord above to guide me with the right decision. As far as your website im totally open to all sugestions and HELP for knowledge, I have so many reasons for living and not a one for dying but if that is the case i want better days for my last days so confused

renal scare 57
Posts: 16
Joined: Feb 2012

Limelife 50 what i was trying to say is they said i would not make it that i wasnt strong enough for the iv therpy and my best hope would be sutent.They said it would not cure it but but maybe buy me a few months. for as sick as i was for just those few days i seriously dont know if i want to try it again. Im suppose to make a decision by the 26 said maybe we culd drop the dose to 37.5 mg but if it is still gonna make the that sick for just a few months,Im just so confused. they said there was several several several nodules in both lungs some measuring up to 3.5 cin it is in the liver lymp nodes soft cell tissue. i look on here and see alot of good results and i just dont know what to do I ask the good Lord above to guide me with the right decision. As far as your website im totally open to all sugestions and HELP for knowledge, I have so many reasons for living and not a one for dying but if that is the case i want better days for my last days so confused

renal scare 57
Posts: 16
Joined: Feb 2012

guess its a good place to air my thoughts had my ct scan yesterday and will have mri of the brain monday back to doctor tuesday said the cancer they thought had spread even more. i hope they are wrong but only time will tell if it hadnt spread to much more gonna try another chemo to see if i can take it. may God be with each and everyone keep the faith

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sorry you're having such a tough time. One thing's for sure - even the brightest and the best of the experts don't know it all in this sphere. However, we do know that we're all so different that many of the drugs have very different effects on different patients.

Where are you being treated at present? Hang in there because they may find just the right treatment for you. You got it right when you said "keep the faith".

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Renal scare - don't give up. I know at a time like this it's difficult to think positively, but new treatments are coming out all the time. Plus there's convincing documentation out there that we can help ourselves through positive thinking and guided imagery. If I'm repeating what you've already heard, my apologies. But you might want to check out Gerald White's website and book and cd. It has helped many. Stay positive and strong. Wishing you the best.

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

RS57, You've got all of our support, best wishes and good Karma coming your way. Stay strong my friend.

nbk9685
Posts: 1
Joined: May 2012

My husband was diagnosed in May of 1999 with a grapefruit sized Renal Cell tumor housed in his left kidney. We elected to have his left kidney removed. He was given a clean bill of health at that time. Fast forward September 2011 a golf ball sized lump was discovered in his thyroid which tested as negative for Cancer 3 times via needle biopsy. We decided to have the lump removed and analized at that time. No surprise, it was Renal Cell Cancer (now stage IV Metestatic). Most recently in late February of 2012 they found a 6CM Renal Cell tumor in his only remaining right kidney. Since my husband has a thriving career, plays golf, bowls, and works out 4-5 times a week we decided against the removal of his only kidney. We went to various Oncologists who advertise the newer treatments only to find out his tumor is too large to consider for the kidney sparing procedures. Long story short my husband went on Sutent in April 2012. He had a few issues with the negative side effects, but from what we understand each month that you are on Sutant the side effects lesson. He is still doing well and has a great attitude. My hope is that he will log on to this site to communicate with all of you. This is an awesome way to bond with other folks who are going through this experience. God bless you all!

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

Welcome. tough choices. Have your husband join in if he can.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

We have more jocks on this site than Sports Illustrated has on its covers. Your husband sounds like he'll fit right in. Good luck to you both.

Fishknees
Posts: 73
Joined: Mar 2012

RS57 good luck to you. I don't know what to say; but, I will say prayers for you.

Charlie Brown I hope you Dad is doing better. Those insurance companies are horrible. Sorry I don't know anything about the Vitamin C.

Donb323
Posts: 3
Joined: Apr 2012

RS57
I am new to this board.

I first found that I had Renal Cell Carcinoma, in May of 2003.I had a radical nyphrectomy,of the left kidney in July 2003.But the cancer had already gotten into my lymp nodes.

But I was diagnoised with stage 4 RCC in March of 2006.I have been on three different medications since then.( sutent ,infinitor,nexavar)Sutent has been the best so far for me.I am awaiting delivery on the newest drug out there now.Inixtib,I think that's how you spell it.I'm hoping this will work to slow this cancer down.
Don't give up hope. When I was first told of my cancer there was only one treatmeant available.Now there is like six or seven different drugs out there with more on the way.
All I can say is even the doctors can't tell you exactly how long you have.Just remember to live each and every day to it's fullest.
My prayers are with you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Not many people join this board with a message as informative and inspiring as that. You've obviously done very well so far and if this forum can strengthen your elbow yet further everyone will be delighted. It might help some of us to know what you've found most useful in your battle over the past 9 or so years. Have you been on other forums, explored mind/body medicine approaches, sought second opinions, been in clinical trials.

You've plainly chosen the thread that you've joined first very appropriately and your experience and knowledge will be much appreciated here.

Donb323
Posts: 3
Joined: Apr 2012

Thanks T_W,for the kind words.
It has been a long uphill road.If it were not for my wife,family and Oncology team at UCD(University of California Davis) I believe I would have been lost along time ago.
One can only hope for the best.When I first found out I had cancer. My Granddaughter was only three months old.I promised her that I would be around for as long as I could.Since then my daughter,has given me two gandsons and another granddaughter. This has probably given me the most strength,for this fight.
The first three years was more or less nromal.I did not have any indications of having cancer. Just every 12 weeks I would have to go in for chest x-rays.Then I had a change in insurance,that led me to another medical facility.(From Kiaser to UCD).That's when I found out I was stage four.
The past six years have had its ups and downs.It hasn't been easy,but atleast I'm still here.I have had enough C-T scans that I should probably be glowing.The medications I have been on have not been fun!I started with 50mg. of Sutent for over 16 months. Then on to Infinitor.This only lasted two months,the side effects were too much for me.(Bood sugars went ski high)Then came Nexavar. I thought this one was going to work for me,but the side effects did not agree with me.(Zapped my strength ).Took a break for a couple of months .Then after this break found out my cancer was starting to run amuck again.So back on the Sutent.Things are starting to grow again,so we will be trying the next drug avalible Inlyta.I'll keep you posted.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Don, you're lucky to have lived through the new era, as I'm certain you appreciate, to see all the new therapies that have come on board since your dx. I'm very struck by the way it seems to be proving the case that, with all the new agents, it's possible to keep going by ringing the changes and wrong-footing the disease, not simply by moving on to the latest thing, but also by going back to earlier drugs and getting further benefit from them. I wish you all the best in continuing to keep it at bay and enjoying your great family life.

cbwolters
Posts: 2
Joined: Apr 2012

Donb323 hey you passed the 5 year mark that I was given in 2009 for living w/rcc. Good for you, I am in year 3 and hope to make 2 more and then if I am lucky more.

cbwolters
Posts: 2
Joined: Apr 2012

I was diagnosed w/rcc in June 2008, had the left kidney removed. The follow up 6 month later CT scan showed that the cancer had mestasized on the spine (T7 vertebrae) and little tumors in both lungs. I was and still am being treated through North Shore Oncology and Hematology in Libertyville, IL. I was put on a clinical trial in February 2009 and was taken off in November 2011 (I was using Nexavar 5 days on -2 pills a day and two days off and Avastin iv'ed every other week). Towards the end of being on the clinical my creatine levels were off due to the Avastin. In November 2011 my T7 vertebrae disintegrated and the tumor was pressing against my spinal cord leading to incontinence and loss of feeling in my legs. They removed the tumor and put in alot of pins and rods to shore up my spine. In December 2011 I stayed on Nexavar until I was approved for Afinitor (insurance and having the drug company pick up what insurance didn't - the drug costs about $7,000 for a month's dosage). Right now I have a low red blood count and will have to see if I will be needing a transfusion etc. I am fatigued and not feeling great at the moment. Have had oral issues w/the Nexavar and Afinitor (loss of teeth and mouth sores). My best year was between 2010 and 2011. I have a husband that has a necrotic right hip and cannot have surgery until his systemic gout is under control and we can medicaid for him (he also has a colostomy bag due to a perforated bowel while in the hospital) so alot of my fatigue is his at home care, only have a nurse in once a week, physical therapy has been stopped until after the operation and I also have a 90 yr old mom who still lives w/us. So the stress level is quite high and am trying to cope as best I can so the disease does not progress any farther. I have found you can live w/the cancer, just have a positive attitude, try to eat right and get enough rest. Good luck to you

garym's picture
garym
Posts: 1651
Joined: Nov 2009

cb,

This is a club that all hope will no longer be needed some day, initiation as you well know is not an enjoyable experience. Your story moves me, to be able to maintain a positive attitude and persevere when it seems everything is stacking up against you and trying to beat you down is an inspiration to those of us whose fight has been much easier. You are a true warrior, please stick around and continue to share your story, we will support you even as you support us, that's how it works here.

A fellow survivor,

Gary

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network