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Hello, My name is Brad and I have Kidney Cancer

BLKJAK
Posts: 108
Joined: Apr 2013

Hello everyone. I have been lucky enough to have been adorned with Kidney Cancer. It was official on Monday April 15th. I have Stage IV Kidney Cancer. It's been sheer hell from the time I started having blood in my urine in March. I have since become good friends with anti-depressants and anti-anxiety meds in the past couple of weeks. I meet with my Oncologist in UW Madison on Monday to discuss treatment options and perhaps clinical trials. What are your opinions of clinical trials? To risky or should I stick to the usual Sutent?

 

Thanks in advance,

 

Brad

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

 

Hi Brad,

I am very sorry to hear your news, I know that finding out that you have cancer is a huge shock, it is a very difficult time for you. I have just had a partial nephrectomy for a stage 3.Obviously I am not going to be much help to you with  regards to meds. There are many others on here who will definitely be able to give you advice.

I just wanted to wish you all the best, you have come to a good place for support and advice. I know it is hard, I have had kidney cancer twice now and it never gets any easier. Try to stay positive though, there are so many success stories now, medical science has come a long way.

Take care, good luck Monday.

 

Djinnie

 

 

 

Galrim's picture
Galrim
Posts: 270
Joined: Apr 2013

Though I wish it were on a more positive background you joined this club, the admission terms considered.

Sorry to hear about your fate and whats in scope for you. But at least in here you are among people who all in some way share a similar fate.

As for your question I will leave the answers to those of our posters with experience in that field. The river you sail down when taking the systemic treatment path has numerous forks along the way. To give a firm statement about what direction to take is very hard for laymen. But no doubt you will get a lot of good information on the experiences people here have had, be it with clinical trials, sutent, votrient, IL-2 or or or...

Good luck with your upcoming treatments. Try to keep up the faith.

/G

donna_lee's picture
donna_lee
Posts: 393
Joined: Feb 2009

Stage IV, but where has it spread/  Mine was all surgically removed -r kidney, left half of liver and set of nodes the first time; then single nodes that popped up one year and then two years later.  That was in 2006-07-and 08.

Thus far, no drugs have been used on behalf of the cancer.  People I know have had positive results with IL-2 and Sutent and are still going strong several years later.

There are too many questions that go with your Dx for some of us to give you much first hand knowledge.

You are doing the right thing to try to find some answers.  Keep looking and keep us posted.

donna_lee

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

Brad, when do they propose to operate?  If the tumor is susceptible to surgery the first thing is a nephrectomy, to have the tumor and part/all of your kidney removed.  Has that been discussed? You're young (we have many members here a lot younger than you, though, and doing fine).  How is your general health? What is the location of the tumor - have you been told it is difficult to operate on and they want to shrink it first? If you're in generally good health, with no complicating factors, surgery must be the first move, ideally within the next few weeks.

You had a biopsy - what did it tell you about the type of cancer it is - is it clear cell renal cell carcinoma (ccRCC)?Do you know the size and location of the tumor?  Do you have a family history of cancer and, in particular, of kidney cancer?

You and your Wife had a tough time getting the news.  It's therefore not surprising that you're feeling low.  Seeing a clinical psychologist or counsellor knowledgeable about cancer will be of help.  So will exercise - generally more effective for mild to moderate depression than drugs are.

How fit are you? Unless you're already very fit, getting more exercise now and being in good shape (not too much surplus weight either) will stand you in good stead in recovering better from surgery.

Give us a bit more information and we'll give you plenty of help.  It sounds as though you're in good hands in Madison and although the news you've just got isn't what any of us chooses for ourselves, it really isn't the end of your world.

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

Hi. I'm Brad's wife. The tumor in his kidney is only 2cm. He also has a tumor in his liver and a lot of lymph nodes involved (left supra clavicular, para aortic, and both iliac chains). Right now it appears that they are not able to specify what kind of cancer cell this is. The plan was going to be to remove the left kidney but now the oncologist thinks we will go rtight to treatment. I'm not sure what to think of that. 

We are 41 years old, have two boys (9 and 12) who know nothing about any of this yet, and were living a relatively good life until all of this happened. We are trying to stay positive and focus on living. It's so hard though. 

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

Is it possible that the other cancers are not kidney?  rather two or more primary cancers?  2 cm RCC's rairly metastisize.

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

The oncologist originally thought he had lymphoma due to the number of enlarged lymph nodes. They did a bone marrow biopsy and ruled that out. They also biopsied a lymph node and that showed kidney cancer. Then the oncologist in Madison did a kidney biopsy and confirmed that. The other tumor is in his liver, and that is also around 2 cm. They saw the kidney spot in the beginning and said that due to its small size it was unlikely to kidney cancer. This was their third choice for diagnosis, the first being lymphoma, the second being something non cancer (sarcoidosis possibly) and the third being kidney cancer. 

I don't know how such a small tumor got so out of control. 

BLKJAK
Posts: 108
Joined: Apr 2013

for welcoming me to the club. I have been keeping as upbeat as possible since finding out I have the "C" word. It's been a challenge that's for sure. This weekend has been one of the better ones. I replaced the stereo in my truck and did some other garage things with one of my best friends. It really helped to keep my mind from wandering to the dark places. Normally I take things in stride and love to laugh and make others laugh. I don't plan on cancer sapping everything from me!

I am nervous about the decision I will have to make tomorrow. I have complete faith in my oncologist. I only hope to have good results as some have had here. I am encouraged by the talk of major breakthroughs being found in the next 5 or so years. Perhaps a cure is in the works and hopefully we all make it!

I'll update this thread tomorrow after I find out what's happening. So far surgery is out of the question because the oncologist would rather get 8 weeks of treatment in rather than wait for surgery, healing, etc.

One question - for those on Sutent, what is the fatigue like? Does it keep you from going to work, and if so is it just a day or several? I suppose it differs for each person. I am a Network Engineer and don't do a lot of physical work. My employer is awesome and understands the battle I am up against and will be flexible. I'd just like to know what you all are experiencing.

FIGHT, FIGHT, FIGHT!!!

P.S. - mrs. blkjak is indeed my wife Smile She typically knows the details of what's going on more than I do. She's been awesome so far in helping me stay on the bright side of things.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

All the best with your appointment today, I am glad you have a strong and supportive partner by your side. When we first get this awful news we are all over the place with shock. You sound like you are now in fight mode, good for you~

Stay strong,

Djinnie

todd121
Posts: 515
Joined: Dec 2012

I just wanted to say hello and wish you both well. Sorry you had to join our group.

I had my right kidney removed in December. Stage 3. The tumor was 7 cm and had grown into the small veins in the kidney. That's why it was Stage 3.  I'm on a clinical trial using Everolimus (or placebo). I'm tumor free on my last scans.

Get more than one opinion and if at all possible with medical oncologists that are specialists in RCC (if that's what you have). I didn't hear a diagnosis of what kind of kidney cancer you have? Is that because there's been no surgery? This small, 2 cm tumor, could you please tell me the location within the kidney? It seems rare to have such a small tumor spread.

Wish I could offer more besides prayers and good wishes. There are others here with Stage 4 that know a lot more about the drugs and trials for Stage 4 than I do. I'll let them speak up. You'll get good advice.

All the best to you all. I know this is difficult.

Todd

 

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