Milestones....

dhs1963

I had a moderately big milestone yesterday.  And I ignored it.  (I had forgotten it; facebook reminded me).

Your years ago yesterday, they found a metastisis to my cancer.  Because of the agressive nature of my primary tumor, etc, I was told that the odds of disease free survival was low --  3 years, was 25%.  5 Years, about 15%.

The doctors presented me one option for treatment:  since I had a solitary met, the best option was to cut the MF out.  (MF is my word).

Surgery occured.  NED ever since.

 

Footstomper

Well done

We're just coming up to my 3rd Christmas since diagnosis.

Not dying is good isnt it? ;-)

Dutch1

I'm always interested in how

I'm always interested in how Stage 4 people do, being one myself.  So, it was great that you gave notice of your anniversary.  Good going!

After you had your met 4 years ago, did the docs put you on any chemo?  If so, are you still on?

Best wishes for more happy anniversaries.

 

Dutch

foroughsh

Congrats to you both. May you

Congrats to you both. May you have many more new years to celebrate

Forough

dhs1963

Dutch1 said:

I'm always interested in how

I'm always interested in how Stage 4 people do, being one myself.  So, it was great that you gave notice of your anniversary.  Good going!

After you had your met 4 years ago, did the docs put you on any chemo?  If so, are you still on?

Best wishes for more happy anniversaries.

 

Dutch

No chemo

It was a solitary met.  They cut it out.  After that, I was told that, without any disease, there would be no way of telling if the treatment was doing anything.  In addition, it is possible that any microtumor I had remaining would grow resistant to whatevery they gave me.  So, I should not get chemo until I need it/there is something they can see.

 

So far it has worked..

mlph4021

Congratulations! I love

Congratulations! I love hearing stories like these, being a "newbie" to all of this and reading conflicting info online that scares the heck out of me.  

donna_lee

For Dutch, and others D'xd at Stage 4

With the comments, "You had hematuria in your UA," and "the US found a mass in your kidney and your liver,"  what followed was you have Stage IV cancer and perhaps 5-7 months to live if nothing can be done.  Lot's of swear words later, I asked, "what can be done?" In quick succession, there was a CT, a full bone scan to detect any bone mets, many calls back and forth between my Onc. and Oregon Health Sciences U. to get an appt. set up with 2 surgical specialists and an Onc. Dr.

My husband and I came out of the conference meeting with hope that a lengthy and radical surgery to remove the cancer would work.  In an 11 1/2 hour OR visit, the urologic surgeon removed the cancerous right kidney and set of nodes posterior to it, then the thoracic surgeon removed the left lobe of my liver, multiple questinable wedges from the right lobe (all neg,), a defective gall bladder and bile duct; and for good measure, pawed and looked through the rest of the organs they had on display. (For those who wonder why their guts hurt inside and out, that is why.)

Once out of recovery and onto the ward, the lead surgeon indicated "we think we got it all."  If you're new here, that is Dr. speak for "we didn't see anything else that was out-of-the-ordinary, or looked  like mets."  The follow up with the Medical Oncologist in 2006 wasn't disappointing.  But the bottom line was that I didn't meet the qualifications for any drug trial they were doing; and unless I had an active site that could be monitored, I wouldn't be given any type of drug.  Hooray, I think!

Wait a year, 2007, and the difference between a 9 mo and a 12 mo. CT showed an enlarging node.  Biopsy positive.  Surgery to remove it.  Wait another year, 2008, and the difference between a 6 mo and 12 mo CT showed an enlarging node.  Couldn't be biopsied but PET scan made it light up.  Surgery, again.

Here I am, late 2016, no radiation, no drugs.  There have been full sets of tests following finding enlarged nodes in my thyroid, call backs on mammograms, and an assortment of other health related issues that come with the seasons or a fall down steps; but I think I can honestly say there is NED.

What have I learned in 10+ years? Have Hope.  Take care of your health (weight, blood pressure, etc.).  Don't sweat the little things.  Say I love You more often. Eliminate tasks-people-meetings where you feel like you are wasting your time, and don't let them guilt you into doing more than you want to do.  Be more selfish with the time you have.  Be generous and be anonymous.  Spend more time with your family and close friends. Laugh. Take time to relax your body and your mind.

And most of all, LIVE ON!  We need people to communicate with us on this board and we want you around.

Merry Everything Wishes-Christmas, Hannuka, Kwanza, Eid and a Happy New Year.

donna_lee

JerzyGrrl

mlph4021 said:

Congratulations! I love

Congratulations! I love hearing stories like these, being a "newbie" to all of this and reading conflicting info online that scares the heck out of me.  

Do not...

Do not do searches for info by googling. Self-referring to Dr Google is rarely productive, and in fact can be scarier than all get-out. Stuff on the internet tends to be out of date or it never was accurate the first place. This is a good site for info and there are some other good sites (folks, help me here, please). 

Dutch1

dhs1963 said:

No chemo

It was a solitary met.  They cut it out.  After that, I was told that, without any disease, there would be no way of telling if the treatment was doing anything.  In addition, it is possible that any microtumor I had remaining would grow resistant to whatevery they gave me.  So, I should not get chemo until I need it/there is something they can see.

 

So far it has worked..

Thanks for the info on your

Thanks for the info on your chemo treatment (or lack thereof).  I've had a good run for someone at Stage 4 and I'm even getting a little greedy in that I'd love to get off of chemo.  I have one small met that can be seen on the scan.  I am starting to think about whether it'd be possible to get off chemo.  You're saying maybe "yes" if the one existing spot can be removed via surgery.  At my next visit to my oncologist, I think that I will start up that discussion.  I would like to hear his thoughts on the subject.  Thanks for sharing.

Dutch

Jojo61

These are all great stories!

These are all great stories! And I know there are many more to be told!

Let's keep them going!

 

jayqlds

Great stories

donna  Your story is inspiring and uplifting to us who have just started the journey. Thank you to everyone who contribute in this board. Some of  us live in countries where rcc is rare and even the medical team aren't up to date with the new treatments and best way to deal with this ugly beast.  Happy holidays  

Jay

WhatIsLife

Congratulations!

As one of the newbies here, I am encouraged to here by hearing others good news. I hope this doesn't sound too selfish, but your milestone is my hope. But I am genuinely happy for you as well. Cheers!

Allochka

I love these stories and this

I love these stories and this attitude so much! They give hope, joy and belief in strength of human spirit and will and possibilities of modern medicine...