This is new for me.

Larry,

Sorry your journey started on the rough side. Like you Irma glanced us in Palm Beach County last week. Hope all continues to improve.

Icemantoo

I know of only some of what you speak.  My situation is similiar in that I am also stage 4.  Originally, the cancer had spread to my adrenal gland and around 15 lymph nodes around the original site.  Only later did it show up in two areas in my chest.  For me, it's been 4 and a half years since the cancer was discovered.  You are goimg through more, that is sure.

My treatment has included radiation, everolimus, sutent and (currently) votrient.  Votrient has been working very well for me.  I hope that it continues to do the job for you.  I can't tolerate the dose you are on, but the reduced dose has been effective.  My surgeon guessed that I had 3 years before the cancer would beat me.  Obviously, I've found that a patient can do better than what his/her doctor's prognosis would suggest. 

I don't know much about the cancer center you're using now, but I assume that it's top notch.  That's very important for you.  Be sure that they follow you closely.  I like the idea of having second opinions when important decisions have to be made.  My oncologist has no problem with that.

Some of the anxiety you've felt may subside somewhat as time goes by.  Cancer has forced its way into your life and it is there to stay.  Hopefully, you can co-exist with it.  No matter how well you do, cancer will always be something that's in the background for you, affecting how you look at life.  That's how it's been for me, anyway.  Especially when you see some success with treatment, the depression and anxiety will be easier to deal with.

Consider the part that nutrition may have.  My wife and I are convinced that it's important.  Fortunately for me, my wife has read anything she can find about the affect that different foods have on cancer and she works to incorporate what she learns into her meal-planning.  The nutrition idea isn't subscribed to by all, but we are sold on the idea.

I would guess that you have found that some friends and family members have stepped up to support you through this and some have kind of disappeared.  Don't worry about those who haven't been there for you.  Relish those who have.

Praying for your success ...

Dutch

Hi Larry!

I am new as well but I am not stage 4 and really don't have anything to offer you except well wishes and prayers.  I am glad you are responding to treatment.  I have found these guys a great wealth of information and the feeling of having a place to go where there are people that know what I am feeling and going through etc has been a tremendous help to me mentally.  

Welcome Larry, glad you found us! Will be here all the way if you like us to be on your journey. I know you already started treatement and have the white hair to prove it! i bet folks are telling you it looks great!

Now remember, some medications/treatments rob our brains/bodies of the very nutrients the brain needs to function properly. Sometimes it is not always psychological (though it feels like it), but more deficiencies of these nutrients. Make sure too you use a probiotic to keep your immune system healthy, yes it starts in the gut. 

Our livers too become sluggish and toxic from too many chemicals/toxins from what we ingest and from medications. If there are any specialized Nutritionists (not dieticians found in hospitals0 who are trained in NRT =Nutritional Response Resting) they can pinpoint EXACTLY what you are deficient in, how to help with side effects from medications. The "supplements" are whole foods made into capsule or ground into pill form. It saved my life!

Thanks for sharing. 

Sending you serenity, HOPE and better HEALTH!

You and your family already have been through too much!

Hugs, Jan

can understand the pain and suffering you are all in

In hindsight did you have any symptoms at all

You are one tough guy  so I know you will be  in shock but happy you hear you have a great team behind you.. it really makes a huge difference

I will pray you continue to  fight  and shout and never give up

Annie

larry54 said:

 

 

Hi Annie

 

Thank you for your post.  This is really a tough illness, but then again I suppose all cancer is.   Being tough is the hard part.  It was one of my strengths in the past, but now something I am striving to regain.

 

Yes, there were symptoms.  Some obvious, others maybe not so much.  I have scoliosis along with other back issues I have dealt with my entire life.  I am used to back pain, but not severe.  I started getting a “different” pain about six months before diagnosis.  It started with not being able to sleep in a comfortable position.  In the end, the pain was so bad I could hardly stand.  My GP diagnosed it as an inflammation and gave me some serious anti-inflammatory meds (steroid and non steroid).  Those worked for a couple of weeks but in the end had no effect. Finally my wife took me to the emergency room.

 

Sorry to hear your situation I’m new here as well, but some things I have quickly learned is that there are lots of people here that have been dealing with kidney cancer as a chronic disease, the more you learn about your cancer  the more empowered you become, statistics are always old and never give you a true indication of anything, and new and better treatment drugs are rapidly evolving. In other words this is a marathon not a race so keep your body and mind as healthy as possible.