Survivor looking for some positive outside outlooks

Kangaroorex

Hi, I was diagnosed with stage IV RCC 29 months ago. I had a kidney stone and went to the doctor.  He suggested a CT and we discovered a mass the size of a grapefruit on my kidney and both adrenal glands were enlarged.  at 46 years old a diagnosis of RCC was a bit of a shock. I had a radical nephrectomy on one side and unfortunatly I am still dealing with a tumor in my other adrenal gland.  On the fortunate side I have no other mets and haven't shown any sign of any since diagnosis and through an immunotherapy trial and an antiangiogenic drug we have managed to keep the existing tumor to the same size (it has grown and shrunk and grown and shrunk repeatedly but it is still the same size now as it was when discovered)

I guess I am writing to see if there is anyone else out there with long term histories and maybe someone to compare notes with.  I see too many of my diagnosis wind up on the obit list in less time than I have survived. It doesn't help that the one other person I knew with the same diagnosis passed away this week. 

I am happy to share what I can of my trials and experiences, I still work, I still do everything i would normally do, although i am usually a little more tired than I would like.  I would also like to hear from anyone who is on other targeted therapies and what their experience has been.

Thanks for listening

Dutch1

You and I have a few things

You and I have a few things in common. 

I am also stage IV.  My life with cancer started almost 3 and a half years ago.  So, I have you beat by a year.  My tumor also was large.  My surgeon likened it to the size of a nerf football.  I don't have the exact measurements with me as I write this.  Big enough, though.  Along with my right kidney, out came an adrenal gland and almost 20 lymph nodes.  The adrenal gland and about 75% of the lymph nodes were cancerous.

Within a few weeks of surgery, I was fortunate enough to get in a clinical trial -- and I got the drug, not the placebo.  It was the "Everest" trial using Everolimus.  I was on that for a year.  Upon conclusion of the test, I was off of all drugs.  About 18 months after surgery, a number of small spots were found in my chest.  The response was to go on Sutent plus radiation therapy.  Those spots have decreased in size, but half of them are still there (might be leftover dead cancer cells from the radiation).  Last fall, one new spot was found in another lymph node.  The response was to dump Sutent, feeling it was becoming ineffective.  Now, it's Votrient.  Scans of late have shown stability in the size of the spots we're watching.  For the Sutent and the Votrient, I haven't been able to tolerate the normal "full" dose.  With the Votrient, the dose is at less than half-strength. 

I'm older than you (66), so I don't have the pressure of work responsibilities.  That makes it easier for me.  Right now, the drug's effects are tiredness, digestive adventures (avoiding certain foods seems to help), forgetfulness, some intermitent liver function problems and plenty of aches.

My wife is deeply into diet and cancer.  She reads anything she can on the subject.  I really do think that diet has a role.  In spite of being retired, I try to be somewhat active.  That helps, too.  Our spirits are mostly up, but there are those "down" days.  I am definitely sick and tired of this lousy disease.  But, I have been blessed with a fairly good 3 1/2 years since the surgery.  For whatever reason, God has been good to us during this trying time.

I don't pretend to be a technical expert on the disease.  I have a good oncologist (small practice, small city) and have a line of communication with people at a nearby teaching hospital with whom we can readily get second opinions -- when we see the need.  So, I rely mostly on the oncologists at this time for direction in treatment and for news of new treatment options.  I try to learn what I need to know when I need to know it in order to make good decisions about changes in my treatment.

That's where I'm at.  Is my history comparable enough to give you some of what you're looking for? 

Other long-termers, I'm also interested in your stories.

Best wishes,

 

Dutch

 

Kangaroorex

thanks for the response

Nice to see another friendly face.  I never got lucky enough to get off all the drugs.  I was on the PDL-1 trial phase with Bev.  I cannot for the life of me remember the official name of the drug but its the reverse function of Evreolimus. 

They moved me to Votrient but i have a condition they call Gilbert's syndrome which makes my bilirubin count act strangely.  Unfortunately there is a side effect of Votrient that shows as high bilirubin and then kills the liver so when my counts started going up they moved me to Sutent.  I was able to other wise tolerate the full dose and I am not having problems with Sutent at full strength although I have been on it only for a week.

on the plus side the Votrient did stop the tumor and knocked off about 25% of its growth in 2 months so there is a reasonable chance for Sutent to do the same.

I have had some interesting "digestive adventures" and fatigue but that seems to be the limits of my problems with TKI side effects so far.  Unfortunately, I  am still dealing with some of the longer lasting side effects of the immunotherapy, namely acute rhumatoid arthritis in the knees and shoulders.  I am told this should go away in another 6 months or so. (Yea...)

My wife has been a great help and support, even starting massage classes to help me with my joints (and, in the process, finding a profession she loves so some good came out of this) and helps with the emotional support to the point where I sometimes just get stubborn about wanting to share from the shear one sidedness of it all.

wish my diet was better but with kids travel job and teaching, its hard to squeeze in nutrition, especially when after the first week of the drug food starts tasting like dirt.  (on votrient, I couldn't taste salt.  Food without any salt at all is very, very, bland)

Best wishes and a good life to you as well

Rob

Footstomper

Hi

DiGnosed 1 May 2013. Stage four,grade four .  10 cm. Mets in lungs. It's been real. This page has been a godsend. Keep two things to hand at all times: moist towelettes, a sense of humour and a loving spouse with infinate supplies of tea, sympathy, love and gin.

foug things...

Kangaroorex

Hi Footstomper

Well I have to say that cancer has helped me develop a pretty impressive sense of black humor and my wife certianly must love me, she has put up with me for the last 24 years, including 2+ years as a cancer patient.  I really would have been much happier if this had waited another decade or 2 though.  As for the moist towelettes, I consider myself amazingly fortunate that none of my side effects have been too messy

Also got a crash course in patience.  which seems to be mandatory when dealing with all the beauracrats associated with getting treatment these days.

thanks for responding. 

Lisa1K

Nerfherder Here

The mass they removed from me was also the size of a nerf football but I don't think I'm scruffy looking. Here's a pic of my scar. Since I'm so small they had to transverse the whole abdomen area. Sorry the image size is so big. haha (I figured out how to resize the pic)

JerzyGrrl

Lisa1K said:

Nerfherder Here

The mass they removed from me was also the size of a nerf football but I don't think I'm scruffy looking. Here's a pic of my scar. Since I'm so small they had to transverse the whole abdomen area. Sorry the image size is so big. haha (I figured out how to resize the pic)

What a tidy incision

Not just tidy, but symmetrical, too. Your surgeon is obviously an artiste! 

Lisa1K

JerzyGrrl said:

What a tidy incision

Not just tidy, but symmetrical, too. Your surgeon is obviously an artiste! 

Thank You

I had a couple of surgeons and I asked for sutures rather than staples. They did an awesome job.

Kangaroorex

Wow

That is an impressive incision!  nicely healed.  I just have the one side but its almost 15 inches long because the tumor was bigger than it looked on the CT and they had to open the hole further after they started.  And when I woke up I discovered a new level of 10 on my pain scale.   I also discovered that morphine does not make me sleepy, I makes me babble like an idiot.

 

hardo718

WAIT!! Lisa....

.....that's a nice souvenir, half a diamond, but what's that hole in the middle?? 

(sorry, couldn't resist)

Donna~

ryansmith

Hi

Hi, i was diagnosed with cancer about 3 years ago and am stage IV. Actually, I had a kidney stone a long ago and therefore, went to the doctor for checkup. He suggested me a CT and the results discovered that it is a tumor in the adrenal glands. It was really shocking to get diagnosed with kidney cancer at the age of 43. I am still dealing with the tumor, but the good thing is that the side effects are not messy. With the help of my doctor, I have managed to stop the growth of tumor and it is still of the same size.

Lisa1K

Kangaroorex said:

Wow

That is an impressive incision!  nicely healed.  I just have the one side but its almost 15 inches long because the tumor was bigger than it looked on the CT and they had to open the hole further after they started.  And when I woke up I discovered a new level of 10 on my pain scale.   I also discovered that morphine does not make me sleepy, I makes me babble like an idiot.

 

Thanks

So much pain!

Lisa1K

hardo718 said:

WAIT!! Lisa....

.....that's a nice souvenir, half a diamond, but what's that hole in the middle?? 

(sorry, couldn't resist)

Donna~

Diamond?

I thought it was a silhouette of Mt. Rainier with a cave. It could be a shark bite. :P

Kangaroorex

I did ask for close

That is so close ryansmith its almost eerie.  May i ask what treatment they are using for you?  My remaining adreanal tumor has an annoying tendancy to grow and shrink and grow in response to treatment and the core of the tumor seems inordinantly unwilling to go away.  It sounds like you have similar issues.  I was diagnosed at 46, 2 weeks after my birthday.  Bummer of a present.

JerzyGrrl

Kangaroorex said:

Wow

That is an impressive incision!  nicely healed.  I just have the one side but its almost 15 inches long because the tumor was bigger than it looked on the CT and they had to open the hole further after they started.  And when I woke up I discovered a new level of 10 on my pain scale.   I also discovered that morphine does not make me sleepy, I makes me babble like an idiot.

 

Babbling

A few years back, I had a procedure done and was commenting to friends who were colleagues at the medical center that I was glad they were mostly knocking me out because I really didn't want to be cussing like a sailor and singing country music songs while semi-sedated. One of them responded, "Wait. What makes you think you didn't?"

So, I'm pretty sure they were messing with me, but yes, I know that I tend to have a high babble factor, too. I hope that if that was the case, I was at least mildly entertaining.