All Stage 4's, please let me know

[notgivingup]

I joined not long ago as I too am finding many great pearls of wisdom in these pages.

Now I ask for your insight. Lately I'm having dreams about the cancer spreading in me. More and more frequently I am thinking about dying. Although not scared of moving on to a better place, I am suffering from a sense of urgency to get everything in order for the family.

From my tagline, you can see what I've had. I'm 42yrs old, male, stage 4 CC, two years since diagnosis, pretty darn healthy but still have a 1.4cm lesion in my liver along with 3 nodes known positive, two in abdomen and one in my neck. Still on avastin. Still working. All liver function assays are in line. CEA has been hovering around 4 for the last four months, but it never was above 8. In fact, on paper, I'm healthier than most people. It's the freakin' scans that prove I'm not.

So, here's where I need help: How many of you are Stage 4 and more than 5 years out? I really want to only hear from Stage 4 folks if possible.

Thanks

[Holly]

As of September 2007, I wll be NED for four years. I know that this was not your specific request but I hope it gives you a little something to take with you and remeber ALL things are truly possible.

Holly

[notgivingup]

Thank you for the encouragement, Holly. I'm curious when you say NED 4 years...do you closely track by cea level, mri or PET scan?

Thanks

[missjv]

hi,
i was diagnosed stage 4 1 year ago and am currently disease free according to cea tests and scans. i know you want to hear from 5 year people but i plan on being here 5 years from now if that counts. go to the colon cancer alliance website and they have stories of stage 4 survivors some of them as long as 13 years now so it can be done. i had mets to liver which were resected and so far so good. good luck to you.



missjv

[missjv]

can your liver spot be removed surgically? how about the nodes? just curious.


missjv

[Holly]

I have petscans every three months. I also rotate every six months with an MRI of my liver and brain. Since I am not a CEA secretor, this test is not a valuable tool to monitor the progression of my disease.

Hope this helps! Chin up and Despite what may be right in front of you, remember that ALL things are truly possible!

Holly

[notgivingup]

I am heartened to see that you are having regular (and frequent) MRI's and PET's. I am undergoing MRI every three months to monitor existing disease, PET's every six months to look for new mets and CEA every two weeks cause I track it for my own peace of mind.

I am VERY interested your not being a CEA secretor....can you elaborate? What is your level? Also, why do the MRI if you are already doing the PET every three months?

The tumor in my liver probably could be resected. At this time, I would be more apt to try ablation as I've already had two abdominal surgeries and now have mesh repair for a ventral hernia. I once thought I could remove the afflicted nodes and am now learning that it is more difficult than I originally thought. I've had 23 nodes removed in two different surgeries. Not all were positive, but the silly things seem to not spread if I leave them alone. I'll see how this works out for me on the next PET scan.

[Guest]

Hi,
I was only a stage 3 6 bad nodes but i was on an old regime of 5Fu and a drug called levamisole. Not a lot of people have been on this regime only in Australia and new zealand(we are a bit Slow) Through survivor boards I have talked with several people who were on the same drugs.
Next Jan will be my tenth year ca free , but the best effort I know is my friend Foxy(Virginnia) from New Zealand. She was stage 4 lost a heap of colon and had a wedge resection of her liver. From memory her next anniversary is her 14th ,STILL clear! I've only contacted 3 other people who were on levamisole ,all were either st3 or 4,between us we have over 41 years of survival. We all have long term issues from the chem but we are all still alive. You have my best wishes,Ron.

[sue]

Ron what kind of long term issues do you have from chemo?
I am so happy for you and your friends that have showed us we can be free of CC too!!!
Thx for responding!

[Ron50]

Hi Sue,
Off the record my doctors agree that most of my problems are connected with chemo officially they admit nothing. After surgery I had 48 weekly sessions of 5fu administered via canula in the back of the hand ,alternating each week. Each second week the 5fu was enhanced with levamisole,9 tablets taken over three days after the day of chemo. It is the most sickening drug I have ever taken.
Since chemo I have had at least six lots of duodenal and peptic ulcers ,some so bad that the endoscopic diagnosis was stomach cancer.Fortunately it wasn't I have had two acute bouts of pancreatitis and subsequently had my gallbladder removed. I have now started passing kidney stones . My liver seems quite badly effected and untreated produces a cholesterol reading of up to 11.4(the Australian measure for cholesterol is different to the US. Here a normal reading is 3.5 and anything over 5 is considered unacceptably high). Virginnia in NZ has had several benign tumours removed since her liver resection and they suspect that it may be heading towards MS. An Acquaintance in Chicago had it when she was 35 ,she is now 45 and is facing the prospect of a double hip replacement due to bone degradation from the chemo. Another australian is 11 yrs out from chem and has just undergone a liver transplant from long term toxcicity suspected to be from chemo. It seems to have picked out our weaknesses and attacked them.
I asked the doctors about long term side effects and was told"we don't really know and we don't really care ,if we find something that kills cancer without killing the patient ,we are obliged to use it". Hopefully that type of thinking has been moderated by those that believe that there needs to be quality to life as well. Cheers Ron.

[Guest]

8 years total survival, 5 years since turning stage IV. Have been NED several times (1 1/2 years the longest period), but mets keep coming back. All chemos quit working after a while, but some peoples tumors (including mine) grow slowly. For the most part I also am healthy on the surface (still working full-time), but my physical strength and athleticism has definitely been impaired over the past couple years-as much or more by treatments and inability to work out due to treatments as the cancer itself. Good luck, hopefully yours won't come back.