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rcc stage4

larman
Posts: 7
Joined: Oct 2012

On july 2nd of this year I had a 19cm tumer that consumed my left kidney, they took out kidney, also they took some limbfnoads that came back neg, also gallbladder,also had stem growing up my aorda to my heart,just had my 90 day and I now have spots on my left lung and my kidney, things not looking to good this sucks, more worried about my poor wife she is taking it very hard.cancer is the worst thing in the world,I wish everybody the best in this forum. larry

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Hi Larman,
Your story is very much like the stories of many of us who are here-- and alive and fairing well with this problem, and have been doing so for a long time. I was diagnosed in 2009 and had/have kidney cancer in the right kidney, lymph nodes, inferior vena cava, and lung. Most of us have been through various treatments including surgery, radiation, various targeted therapy drugs, immunotherapy.... there are many options.

Try to find out who the best doctors are in your area, that have the most experience with kidney cancer and the types of treatment, and RUN if any doctor tries to give you n end-of-life expectation.

Read around here and feel free to ask us anything. There are no stupid questions.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Larman.. sorry to hear about all of this. But as Phoneix has said, there are many treatments out there now that have found success. Be sure to go to a main cancer hospital if possible. A lot of the things you read online are out of date. In the past they had nothing to really treat the disease to keep it stable, there are plenty of options now. Several new drugs have come down the pipeline and even some trials are proving very effective. Please tell your wife not to lose faith, as scary as cancer sounds, there is plenty of hope. Keep looking on the boards here. We have others who have had cancer all over their bodies basically and have gone into trials for MDX and have done very well and the treatments are tolerable. There is also
sutent, Votrient, IL2 trials and the list goes on. What hospital are you treating at and what did your oncologist suggest as treatment? If you don't mind mentioning it so others here can reach out. Keep your chin up. We are praying for you! By the way, if any doctor says there is no hope don't believe him, just seek out other hospitals.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Larmen: I'll live 'till I die and I ain't dead yet! Diagnosed May 2011... Surgery June 2011...tumor infested right kidney taken out, gall bladder too,a few lymph nodes for good measure. With a stroke of luck my right adrenal gland saw the scalpel coming and dove out of the way.. it's still hiding somewhere in there. My lungs were full of blood clots from the tumor extending into my vena cava. So it was no surprise when 3 spots showed up in my lungs several months later to join the little fella in my right orbit bone. I've had high dose IL-2...creatine level was too high after second round...then Nexavar... didn't do well with the foot sores. Inlyta...minimal side effects but blood pressure too high..a new CT scan and MRI just showed 2 of the lung spots have grown so now I'm on Afinitor ...just bumped up to the full dose... have to watch my glucose. Why the long discourse? Simple... I don't remember how big my tumor was or what stage it was...I don't care. Thousands of people who didn't know they were going to die have done just that since I was diagnosed. I'm still here and so are YOU! LIVE 'TILL YOU DIE AND YOU AIN'T DEAD YET !!! and watch out for that bus when you cross the street.....

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

That seems to me to be about all that can be added to the three superb posts above.

Please take due note of the statement by one of our most valued contributors - Phoenix Rising - that there are no stupid questions and feel free to ask away and gain all you can from what we've collectively picked up here. There is such generosity of spirit on these forums that a newcomer would be hard pressed to tell the caregivers apart from the patients. I'm very happy to say that Ange, for example, is a caregiver (for her Mom, particularly) and is, I hope and pray, in fine health herself.

In contrast, both Phoenix Rising and, obviously, also Gordon, are at the tough end of the spectrum, like you, and exhibit the perfect survival mentality. I feel that you've got it too and you'll do your level best to stick around as long as possible for your Wife's sake and that of others who care about you.

Gordon's already been through the wars and Phoenix Rising is going strong after being in the game since 2009. Great minds think alike, when it comes to pseudonyms - she has a predecessor on the breast cancer forum - Jan - who goes as 'phoenixrising' and she's been around and posting since February 2007. She's another brilliant lady, well worth reading and the camaraderie among the sisters on the breast cancer threads (where cats seem to have a special role) is unexampled. If you want to be cheered up and especially if you're an animal over like me (and particularly if you love cats) you are in for a real treat if you go to a thread by phoenixrising entitled "Phoenixrising aka Jan" which is to be found at:
http://csn.cancer.org/node/171191

While on the subject of names, what a good example of Billy Connelly's theme about Scottish ones - is it Gordon Charles, or is it Charles Gordon?! I once used to play golf with a Scott George and a George Scott - things can get preternaturally complicated on golf courses!

Well, I said I didn't have anything to add, but I did find something to say - sorry for being so loquacious (ok - gabby!)

KJones1969
Posts: 158
Joined: Mar 2012

Your story sounds similiar to my husbands. He had a radical nephrectomy in March and they removed what the doctor said was a football size tumor and his left kidney and his kidney. It had spread to his lungs in 5 spots. He started Votrient back in May and his first scans after 3 months showed a decrease in size of the lung nodules. He went back last Friday and those nodules had increased in size and there were new spots on his lungs. Thank God it has not spread to any other organs but the doctor was surprised by the amount of growth from August till October. They are putting him on Afinitor this week and I am just praying it works for him. I'll be thinking about you and praying for you Larry and your wife. I feel her pain by being the caregiver. When we got the news this past Friday I broke down in the doctor's office at Duke. Keep your head up!!!

one putt
Posts: 72
Joined: Sep 2012

Let me join in welcoming you to this site.You will find it informative as well as comforting.I'm stage4 grade4 with a right radical nephrectomy.I have tumors in my lungs,hip,and shoulder.I tried high doseIL2 unsuccessfully,and am currently in a trial for MDX-1106 and Votrient which has reduced my tumors by 46% since May 10,2012.There are many trials out there.Speak to your doctor and if you don't like what you hear,get another doctor.It's only natural for your wife to be scared.This disease is just as tough on the caregivers as it is on us.This is a team effort so be sure to keep her informed and involved.My wife,Alice,was scared at first. I would't be where I am today without her love and support.There are many new and exciting things in the pipeline.Best of luck to you and your wife on your road to recovery.

jennsam's picture
jennsam
Posts: 14
Joined: Oct 2012

My husband can tell you how difficult it is to watch your loved one go through this CANCER thing. I am 8 weeks out for a partial and just started seeing my husband crumble. He seems to have gotton through the acute phase only to now feel the real impact blow of this thing.
I think it is important for your wife to find a group or a therapist to help her through this time. There is no instructional handbook on how to go through watching this. I said to my husband last week, I am kinda glad I am the one going through this, I don't think I could watch someone I love go through it. At least I have some control over myself and things that happen where he has to just WATCH and feel helpless. It is in most womans nature to be the caretaker...the ones with answers to problems...we usually have the last word;-) But with illness...the ilness has the last word. That in itself is rough to get used to.
My husnband and myself are in the medical field he a social worker and me a Nurse practitoner, with all our backround of medical things we are going through a rough time. This has definatly made us closer, and he laughs at me when I call him my umbilical cord, but his presence through this endeavor was unbelievable.
I have been trying to keep the lines of communication open about what he feels right now as it seems to be really hitting him about the fear of the future and all the unknowns.
I hope your wife can find some support. This is a scary and unknown journey,it is important you guys keep up the communication.

I am alive
Posts: 220
Joined: Jul 2012

Larman,
Have you looked at the kidney-onc site (just google it and the list serv will come up). It's a good addition to this site as you begin your kidney cancer education. The more you surf the sites the more you'll get the lay of the land re: what drugs are out there, what clinical trials, side effects, cancer hospitals, what you should ask the doctor, what kinds of tests you should have, etc. It's all incredibly overwhelming at first and you're probably numb with fear. But it gets better. First, do you have an oncologist? If it was a urologist who removed your kidney go find yourself an oncologist who is knowledgable about kidney cancer (many are not). What kind of kidney cancer do you have? Clear cell? Non clear cell? The type of RCC (renal cell carcinoma - a fancy name for kidney cancer, the initials for which you'll see a lot on these sites) will determine your treatment. But here's the best news: you are not alone! And neither is your wife. God bless & good luck! Time to get up off the floor and kick cancer's butt.

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