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Calling all Stage IV's!

Wenchie
Posts: 88
Joined: Apr 2009

OK, I'm tired of "waiting". I'm starting my 6th year of chemo and I'm just tired. Naturally, my Oncologist thinks chemo is the only way to go, however, the mets to my lungs continue to grow. I have about 7 scattered throughout both lungs. I've found that once the mets are in both lungs, no one wants to touch you. My Oncologist is discouraging me from any type of cyberknife saying that I'll need oxygen to walk to the television. My CEA continues to climb, the mets continue to grow (about 1.5cm in size) and I continue to be ticked off! Anyone have any experience with successful types of radiation or surgery?

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Good to see you around:)

I can feel your frustration - got me frustrated just reading it too...it's interesting that if tumors are in both lungs, surgery becomes a 'no go' deal...I would imagine it comes down to numbers, as in too many spread out over both.

Still, you would think we could 'cherry pick' them, right?

I would figure we attack one lung and recover and then go after the other....or do both at once and then radiate and some type of treatment...if chemo is failing, perhaps Erbitux or Vectibix? Have you been tested for KRAS? I can't remember.

Perhaps hitting both lungs at once would be a whip....I've had 2 lung surgeries on the one lung + radiation + chemo = big fight. Maybe the stamina and available lung capacity might be the issue here in doing both.

As for Cyberknife and saying you'd need oxygen...I've had Cyberknife done to the liver...it is high concentration radiation treatments and it is know for a more targeted approach....I can't see how doing both lungs will require you to be on oxygen.

My last lung surgery, I was on oxygen alot....almost went home on it, but I was stubborn and got my SP02 level up high enough to discharge with standing orders for oxygen with a phone call.....but I decided not to do it and figured I'd be okay.

Did he say oxygen for life? I can't buy this theory if he did, Wench, you know? I could understand it short term and if that's what it took, it's not too bad....they have many home and portable solutions available these days.

We differ in the fact that I had a tumor in only one lung - maybe that's why they accomodated me, don't know....but I did the full protocol along with the surgery...and reached the 'watch and wait' state for the 3rd time, as you recall from my results post.

I've had that type of success - although I feel it won't last indefinitely, I'm back there again and trying to recover the strength needed to go again if called upon...though I would have to think about things a little differently.

I'm sure you've considered another opinion? I can't remember which area of the country you're in, but my whole medical team is now in place down here at UTSW....#1 hospital in our area - we're the MD Anderson of North Texas, recently promoted to an NCI status.

I've got a great lung guy for surgery and radiation, should you ever consider a trip this way.

I just crossed over the 7.5 year marker, Wenchie...you know I've said many times that "I'm tired." I get it - even being out of treatment it's still hard to get it all back, because the beatings have all been so cumulative over the year and just add up - and eventually catch up to you.

Congratulations on making it 6-years...you're a member of the "long-term" fighting squad and our membership is low, so it is an accomplishment to cherish and appreciate...because not everyone makes it that far. The fact that you have speaks for itself...and I know a little something about longevity...

Stay with it - keep churning - keep paddling - keep trying - at least for now...

Nice to see you this evening...

-Craig

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hold on... I'm balling up my oxygen wires!! NOT!!!! I have had 3 Cyberknife now. 2 in right lung and 1 in left lung. I do not use oxygen and never did..not even for a minute. My breathing is fine. I don't get short of breath. I feel pretty good actually. I don't run no marathons but heck...NEVER ran marathons!!!!! LOL... Just wanted to throw in my Cyberknife experience cause I'm pretty happy with it. Get CEA count tomorrow and will update here. It was 8.2 before CK soooooo????????? take care

Jennie

jasminsaba
Posts: 157
Joined: Jul 2011

Hi Craig - I was hoping to pick your brain a bit about your cyberknife treatment for liver. Can you tell me a bit more about your situation and treatment? I'd be very grateful. Thanks.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Sure...at the time back in '07, I was originally scheduled for an 80% liver resection...when the surgeon opened me up, they discovered that my liver was too fatty and told my wife that had they proceeded, I most assuredly would have died on the O/R table.

That's when they shifted over to RFA to do the ablation. The surgeon was not able to get clear margins and had the foresight to go ahead and implant the fiduciary beads in and around what was left of the tumor to prepare for a Cyberknife treatment program.

It was a good call....with the beads already installed during surgery, that was half the battle...so the surgeon consulted with the radiation oncologist - together they drew up the X's and O's of the treatment plan.

What it consisted of was 3 treatments at 2 hours a piece. From the doctors' gameplan, those coordinates are input into the Cyerknife device to plot the course that the laser is going to 'radiate.' It is basically very intense, high doses of radiation - administered over a shorter time - and with more pinpoint accuracy than traditional external beam radiation.

You are outfitted with a 'vest' - think of a water skiier's vest...the vest has connections off of it that attach directly to the machine itself. What this does is "compensate" for your breathing - the heaving in and out with each breath.....the Cyberknife picks up on these differences and 'adjusts' its path to correlate with the preset path that was originally input.

The idea is to allow for less damage to surrounding tissues and organ from the breathing process.

The 2 procedures combined were considered successfull and we did eradicate the tumor at the 'local level.' Of course, Folfox and a host of other stuff followed....

I did recur when it went to my lungs.....but spent last year fighting hard with a whole battery of artillery and am currently back to a 'watch and wait' state once more.

Hope this helps...

-Craig

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

No experience with radiation or surgery for lung nodules, although one mysteriously disappeared on my wife. My thought would be to find providers that think in terms of inhibition and stasis with with off label uses, and surgeons that might take a multimodal, staged approach. We did surgery for para aortic nodes on a boatload of inhibitors and light immunochemo, and they haven't spread.

In the natural and off label therapeutic worlds, there's no shortage of molecular target inhibitors. No waiting line either. Since we "haven't met", you might click [tanstaafl]. My wife is her own trial, n=1.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Like Craig, reading your post got me extremely frustrated too. I don't get it when there is something like cyberknife around that they wouldn't at least give you the opportunity to try and see if it has an impact. Does anyone know if cyberknife is like radiation when there is a limit of how much they can give you?? Doctors don't seem to like to go cherrypicking, that I don't understand either.....I understand not wanting to put a patient through a bunch of surgeries, but it seems there are non invasive procedures that can be used but they just don't seem to want to utilize them.

th_in_canada's picture
th_in_canada
Posts: 46
Joined: Nov 2011

Your story sounds similar to mine except I've only been fighting for 2 years. And my oncologist gave up on me in September. At that time I had 7 mets (got 8 now), 1 in the left lung and 6 in the right, only 1 in a bad position. My oncologist knows NOTHING about radiation, rfa, cyberknife, microwave ablation. It's not her specialty so she would not recommend me for anything.
I found a thoracic surgeon in San Antonio who said he could use rfa to try and get rid of most of the tumors. The problem tumor, I was going to ask for cyberknife for. UNfortunately I'm in Canada and I needed my onc's approval for this and she wouldn't give it. I'm in the process of fighting with the tumor team. (btw, my CEA in Sept was only 4.1)
So my opinion is: get another opinion or 2. Try the big cancer centers.
Tricia

menright's picture
menright
Posts: 258
Joined: Oct 2008

Wenchie:

I am entering my 4th year. I am unergoing chemo as I write in preparation for the surgical removal of tumors on the lymph system next to the lung and a lobe resection for its source in my right lung. I have a cluster of three mets in the lymph node (2.3cm) and a met in my right lung (1cm)

The plan is for Folfiri for 2 months (every two weeks) and then surgery. I would guess that it is your both lung mets that causes your surgery options to slim.

I did have an RFA procedure on my left lung last year and now a lobecotomy on my right lung so it can be done. Press your doctors for more information.

Best of luck.

Mike

helen9's picture
helen9
Posts: 1
Joined: Jan 2012

Hi I'm new here. I was diagnosed with rectal cancer and had bowel resection in May 2010. 2 months later I had 40% of liver removed due to mets. Then went on the 12 week chemo course. Cat scans every 3 months.
I had 2 spots on lungs which they weren't sure about so just watched them. 6 months ago the cat scan showed 4 more small spots (which didn't show on Pet scan) My liver surgeon arranged for RFA on all 6 spots, 2 in left lung and 4 in right lung. Here in Australia it is just an overnight stay and the procedure isn't too hard on the body. I was unlucky that they pinched a nerve while my arm was pulled up over my head for the procedure. Numb elbow and pins and needles feeling all up under my arm. It is gradually getting better.

A scan 2 months later showed 1 new spot which is being watched. Due for next scan in a weeks time.

Last week I had biopsy on small lump under skin under right ribs at end of liver scar. it is another met from the bowel cancer. I didn't realise you could just get a cancer lump not attached to any organ.
Doctor said day surgery to remove it and then probably chemo if my oncologist thinks it's needed

Anyway the reason for my reply was to let you know I had RFA on both lungs at the same time and was out of hospital the next day.

ps I was also diagnosed with non Hodgkin's lymphoma at the same time as the rectal cancer. It has been waiting and watched with no treatment so far

Wenchie
Posts: 88
Joined: Apr 2009

I found a Radiologist that will do cyberknife but only on the two mets that are in the "danger-ranger" locations. I want ALL of them wiped out of my lungs!

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

Be patient. I'm thankful you found a willing doc. One foot in front of the other. My prayers r with you. And I do mean that.

Wenchie
Posts: 88
Joined: Apr 2009

OK, fast forward 6 months since this original post...original Radiologist decided not to do Cyberknife since the nodules were not in position to block an airwave. Six months later, I have a partially blocked airwave due to a nodule in the lymph node right in the apex where your trachea branches off into each lung. In 3 months, CEA went from about 8 to almost 60. I'm not a happy camper. Has anyone had RFA in this "throat" area and how did they access it (through the back or front). I'm on Xeloda right now and obviously it's not doing a thing! I'm sooo frustrated with these Oncologists who just want to sit and watch and wait. Hmm, it looks like we've waited until my breathing is compromised!

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

Here is an older post by a Dr West at the GRACE site. it pertains to lung cancer as opposed to CRC with mets to lungs, but the some of teh information may still apply.

RFA for lung tumors

here is the search list at GRACE - lots of posts on RFA

Ablation

You can also ask questions and get answers from oncologists, although they do not yet have a CRC specialist.

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