Recently Diagnosed Stage 4

Hey Mart, sorry you had to join our exclusive club.  As I just mentioned on another thread...have you looked into HAI treatment?  It can really be a lifesaver under the right conditions (it was for me).  In general, folks with mets limited to the liver may be considered decent candidates - though if your lymph node involvement is significant or if you have other issues that my preclude this from being a possibility.  Would love to see you get some more quality time with your family - I have an amazing 10-month old daughter that I am able to enjoy thanks in large part to HAI, what a blessing she is.

As for what to expect from chemo - it really does vary greatly by person.  For me, the 5-FU/capecetabine really was a cinch.  But the Oxaliplatin can suck - true, the shooting pain from cold things and the cramping went away after a couple days, but you and your onc have to be very careful that the neuropathy in your hands and toes isn't lasting the full time between treatments...because by then there's a serious chance of permanent neuropathy once you are done treatments.  For me, this Ox neuropathy got worse, peaking ~7 weeks AFTER I stopped Ox treatments.  It eventually declined, but I still have some minor residual and permanent neuropathy in fingertips and feet.  Given what I know now, I wouldn't have done 12 full txs of Ox - especially since the VAST majority of the benefit IMHO is gained in the first 6-8 txs; thereafter the risk of permanent neuropathy gradually overtakes any added benefit.  I probably would have done 6 to 8 full txs of Ox, then maybe a couple reduced doses.  But who knows, you may react better to the Ox than others.

As for the emotional side - you will likely find you have more strength than you think, as you get used to dealing with this.  And I understand your wife's feelings of despair and helplessness at times, mine felt similarly at first.  I was lucky enough to get miraculous results from treatment, I'm hoping you will too.

Anyway, feel free to PM me with q's on anything.

Best wishes,

Chip

Journeys....

Sorry you found the need to be here, but welcome.

You might want to fill out your profile page when you're in the mood. Once you post your history it will save you from having to repeat it over and over!

And of course, you should click on other's monikers and names to see their profile page, blogs, etc. It will give you a better idea of who is who and what each of us has been through without having to ask.

You're at the beginning of your journey, and it can be a long ride. For most if us, it never really ends; once you have been diagnosed with cancer, the worries are always hanging in  the shadows, lurking, ready to pounce when you least expect..... And like most of us, a hangnail will cause you to worry that it could be cuticle cancer... It's paranoia at it's best!

Always seek a second opinion. The opinions should be from colorectal surgeons that are NOT of the same group or organization. Even your best favorite physician of near family closeness can make tragic mistakes. A second opinion can help avoid tragic outcomes. (trust me) Get a second opinion prior to treatment!! No physician worth having should feel insulted by a patient seeking another opinion! Most physicians learn of new treatments from other physicians, and usually through a patient that sought that "other opinion". (you can read of my experience with my favorite Gastro doc and how I may die due to her error of judgement).
GET OTHER OPINIONS

The liver is the only organ that can rejuvenate itself; it can grow back even when 75% has been chopped off. The live controls and regulates damned near every chemical in your body. Serotonin and Melatonin is balanced by your liver. The balance is what keeps everything from mood swings to heart beats regulated. You can expect many changes while going through treatments for cancer in the liver, so don't build fear around the confusion, things get better in time.

Resection(s) (removal) of various sections of intestine can result in an ostomy, and that is no "big deal" in face of everything else. It may damage your ego temporarily, but it only becomes a big deal if you make it a big deal.

Your interest should be in the surgical removal of your cancer, and at almost any cost. Chemicals and radiation do damage to good cells as much as the bad cells, and although it may be the choice of many, there are always other options if one chooses to go that direction. But the most important thing, is to get the tumor(s) out as quickly and assuredly as possible. That is where the experienced colorectal surgeon fits into the picture. Ask nurses regarding their opinion for "good colorectal cancer surgeons". They see it all and may be able to offer good suggestions.

Your wife should go with you to every medical meeting, to take notes and ask questions. Your spouse is a major part of your life, and needs to be part of the healing and fight. It's tough, that feeling of helplessness, but although one may not be able to help removing the cancer, they can be of help in bolstering the ego and drive needed to do the battle to the best. There's a need to know how much help that "just being there" can be; it should be underscored and made known.

On what may be a morbid side of all of this, it has to be said:
Get your papers and life in order while you have time. It's a very sobering experience, and the documents will get soaked with tears, but getting things like wills, and deed changes, etc., along with plans regarding what to do with one's remains (I just got through with crematorium assignments), takes a ton of weight of the survivor's back if things go sour. It's not what anyone desires to face, especially at the beginning of this journey, but once done, everyone will be glad it's out of the way.

There's a kind of relief; a quiet calmness that comes from getting things in order. All the sadness and fears that one feels not knowing one's destiny; being faced with the true mortality of one's being, and being able to move forward into battle, manages to have a more positive effect than can be appreciated prior to having faced it head-on. Making out paperwork brings the reality to the forefront, and once faced, it is easier to move forward. It's difficult, but can make things much easier to cope with for everyone involved.

No, you have not been handed a "death sentence" any more than life itself carries it's own death sentence. There's no expiration date that's been emblazoned on your forehead during the middle of the night. You're just beginning a very new experience; a journey that can be as life changing as you allow it to be, or desire it to be.

You didn't cause this debacle, and there was no way to avoid it; it happens.
It has occurred throughout history, to good, bad, young, old, religious and atheist, to clergy and devil worshipers....... it happens.

Get other opinions from colorectal surgeons that ARE NOT of the same group or organization prior to any treatment!

Take some time to read the profiles of others here, and their "blog" if they entered data to one. You're not alone; what you are about to go through has been experienced by many, many others. Many are still poking around many years after their bleak diagnosis.

For what it's worth? I was diagnosed stage 4 in 2006 with a prognosis of three to five years IF I did chemo and radiation (and that was after surgery). I did neither.

You haven't been "time stamped". Lean forward.

You'll be fine!

Best wishes,

John

Please tell your wife that chemo does work (at least it is for my husband).  His mets went to the lungs.  Chemo got rid of the tumor in the rectum and in the lymph nodes.  Plus it has shrunk the mets in the lungs by half and that was after 8 treatments!  It sure is an emotional rollercoaster tho!  Glad to hear you and your family have support especially with small children.

My dad was diagnosed at 65 with mets to the liver and lungs. Chemo and radiation killed the tumor in the colon and rectum and shrunk/eradicated most of the Mets. Then they got pissed - his colon and rectal tumors are still gone - he never had surgery. At the same time, they noticed his thyroid was weird... First onc ignored it. Finally it took over his neck - Stage IVA Medullary Thyroid Cancer. This was after he almosg bled to death due to ulcers in his colon (Avastin - rare side effect). We switched hospitals all together at this point. Later had a stroke - mets to brain - first hospital said nothing they can do, hospital he's being treated at said these were easy. You wouldn't know he had a stroke. His cancer seems to come and go as it pleases. He responds ridiculously well to radiation - it wiped out quite a few tumors. He's only had one surgery and that was on his thyroid (followed by 3 days in the ICU). He is still active considering - it's been almost 3 years. There's a lot of hope honestly... You're gonna have great days and holy **** am I gonna die days, but take it day by day. Listen to your doctors, but also follow your gut.