Renal Cell Carcinoma (Kidney Cancer) Support Group

Meriel,
My husband is new the metistatic condition of RCC also. He's on his third wk of Sutent. You are reeling right now, and that's normal. However, it feels like crap! RCC really SUCKS BIG TIME because of the few traditional treatments it has!

How "involved" will you be in research, and helping him make decisions about his care?

Sarah

Hello Meriel!

Getting such news is definitely shocking for you both. We've been through the same thing, so can totally understand what you're feeling. The most frigtening thing is thinking about the future. I make myself focus on only today, and that has helped me greatly.
My husband didn't have a good experience with Sutent, but most people tolerate it well. I pray that your partner will too.
Hang in there, and know that all of us on DS are here for you.

God bless!
Love,
Ingrid

Sarah and Ingrid, just to say thanks so much for responding. So nice to know that people are out there.
I don't know about research, Sarah, the doctors haven't mentioned it, but I'm not sure if that's because we're in the Uk/not suitable...probably worth looking at. As to helping him make decisions about his care, well, I always said I wore the trousers, but....ultimately it's his decision, though I will be right there every step of the way. Smothering him a bit at the moment I think!

Focusing just on the moment sounds about right.

Sending lots of positive thoughts both your ways too

Meriel

Meriel,

I am sorry that you and your partner are going through this. I feel like I'm fairly seasoned with the experience you are now facing. My husband lost his kidney 7 years ago. Since that time the cancer spread to his lungs, some lymph nodes and his stomach. However, he has a good Oncologist (which I recommend) and that doctor is well researched on all the medicines and treatments available. My husband has tried Sutent and many other drugs including many clinical trials. Some worked for a period of time and then stopped working, and we move on to something else. After 7 years, we are starting to think that perhaps, it just may be possible to "live" with cancer as people live with other chronic diseases. Please don't lose hope and do find a good doctor who knows his Kidney cancer research. Good luck to you both.

LSMS

Thank you to LSMS, that is heartening. I'm very new to all this, but more and more people keep saying 'get involved in research' so it's definitely an avenue to look down.

Not doing too great at the moment, as his pain levels are very high - since the diagnosis really, which i think must be at least partly psychological.

Very best wishes to all here tonight x x x x

Welcome Meriel:
I am so sorry to hear what you and your partner are going through. You will find a lot of love and caring on this site. If you believe in prayer, you will find a lot of that here also. You don't have to have a specific question - just let us know how you and your partner are doing.

I have lost a kidney, and been diagnosed with mRCC (metastatic Renal Cell Carcinoma). You are right - it is very difficult to know how to "be". For me, I have decided I am not going to let cancer consume my life the way it is trying to do to my body. Fight, do your research and concentrate on the joy of living, not dying.

We are here for you. Keep in touch.

Sandra

Hi Meriel, I am so sorry that you both are enduring this; I can offer prayers and support in that way, and you already know that people here mean what they say about supporting you both. Bless you. Hunter

Hi Meriel.
you are going thru the shovk of it all right now just stay with this site for any advice, you need to talk or get frustrations out....It's a long road as i know, my fiance and i have been living with it a year now....There are wonderful women here that will help you thru this, welcome to Daily Strenth...
God bless you & yor other half
Beccanne

Hello
My advice to you is to stay strong and positive, don't rely on internet research and be there at every doctor visit as the extra pair of ears.
Don't despair, as there is hope and much treatment available today. I don't know what the health care system is like in the UK, but Sutent is the drug of choice here in the U.S. for MRCC too.
Have they scheduled surgery for him?
This is a great web site and you will find information, compassion and support here.
Good luck to you both.
glors

Just want to say thank you to you for your recent replies.
Hunter, thank you for your support and prayers.
Beccaanne, I looked at your profile, and I'm so glad that your other half is still around. You seem to be so very strong. I too would like to believe, that, despite what the doctors say, this thing can be beaten, or at least controlled.
and, Glors, you are so right about going along to every appointment - partly it allows me to feel a tiny bit more in control of things, but also he doesn't take things in too well himself. No surgery is scheduled; it's all just too big and uncontrolled. I'm allowing myself to hope that the sutent may shrink things enough to allow for a nephrectomy at a later date, but am aware that is very much a best case scenario.

Lots of love to you all x x x