mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[David Losh]

I went in to start my 8th round of FOLFOX yesterday and my blood counts were low so I was transfused instead, and start the chemo tomorrow. I was diagnosed in December, had four rounds of Avastin, and 5FU before the Oxiliplatin was added. It's now been five months, and I'm already about fed up. My side effects aren't that bad, but the over all experience is draining. My blood pressure is up, I can't think straight, some times, and other times my mind is racing. I'm grateful for this time, but we are a special club.

My wife is freaking out, but has faith that I am a survivor. I'm going to keep taking the chemo as long as I can stand it. My neuropathy started being noticeable after the last treatment, but my feet aren't as bad as some others that I've talked with. My next CAT scan will be in the middle of June, and we'll see about surgery then. I would prefer to stay on the chemo, like I said, for as long as the tumors are shrinking.

I already met with the colon surgeon, but not the liver doc. I've asked about that since, but it seems my chemo is doing well. I agree that surgery is the only way to get a cure, and I want a cure. I think a cure is possible, not just for us, but for all end of life cancer patients. There is a conference starting today for oncologists that attracts people from around the world, the vendors, and sales people. I think, in my own small way, in all of those oncologists, with all of that research, and funding, that there is something simple that is over looked, but sitting there.

So, I'm hopeful, but drained at the same time.

[skypup]

He;;o This is my first post, I am new to this board and site, however not new to metastatic colorectal cancer.

Welcome. This is an amazing group of people. Many of us can identify with both feeling tired and not having people to talk to about that. Yours sounds like an amazing and arduous journey! Hope you are posting for a long time to come!

[skypup]

David, welcome and sorry you're here. There are likely to be a couple of interesting sessions at ASCO this weekend about some immunotherapy trials, but it is still early days on that front. So keep after the docs about that liver surgery (I assume from your post you only have liver mets?). Surgery is the only potential cure, so go for it if you can! From experience I'd like to urge you to be proactive in your care. Even the best oncologists drop the ball or get stuck in a rut. Don't be shy about a second opinion, either...

[Rheaeliza]

Thanks for the advice guys! Very appreciated. So much of you have been through so much more than I have. Sometimes I feel like I'm okay and I have a grip on this all, and sometimes it's so overwhelming. I try to stay positive, and I think I do a pretty good job, but the dark thoughts are there. Sometimes I'm walking down the street on a beautiful day feeling fine and all of a sudden my mind wanders and I feel this dark feeling, like this disease is going to kill me, young. And I don't want to die. I don't want to get sicker, and then I get so scared and so angry, and I feel like I am so thankful for my supportive friends and family, but nobody knows what it feels like to have these thoughts in your head, racing around, back and forth, all the time, except for all of you who are going through the realities of living with stage 4 colon cancer every day.

Thanks again everyone.

[tawni's mom]

Greetings all!
Well I have news, not sure how to take it really.
I have tingling in my feet when I tip my head forward. So I had an MRI yesterday and it says bulging disc in c4-7. Something about narrowing of the thecal sac? And central canal narrowing due to degenerative disc disease? Doctor didn't seem to concerned and said to just take pain meds if it hurts. Neck doesn't hurt tho.

Next I questioned the idea of ever getting liver resection. Got told that wont happen, the liver is now too toxic from all the chemo (12 doses now) which disables a surgery plan. Could be possible for Cyber Knife tho.

Lastly, appears I am chemo for life? Not real sure how it works, other than once my CEA drops to normal range I get a break. Then keep testing blood every few weeks, if all stays normal, then go out to a month. If CEA rises, back to chemo. Is that about accurate?

There is no mention of removing main rectal tumor.

So not sure if this is decent news, or depressing news. Chemo for life...

[Guinevere]

I'm not sure either if chemo for life is good news. I guess it's better than "there's nothing more we can do".

Welcome to the newcomers! This is a great place to share and vent and I'm so glad Kathryn started this thread!

God bless ~
Guinevere

[Rheaeliza]

Hey Kathy (Tawni's mom!)
Good luck with number 12 today...we are on such similar paths. Been told chemo for life, no talk of surgery or removal of primary rectal tumor. I believe our primaries are even in the same spot!

My oncology nurse, whom I adore, kind of explained it to me like this:

The chemo is chemo for life, or chemo for now. Get as much shrinkage as we can, keep it from growing as much as possible, monitor me, give me small breaks when we can, be as agressive as we can when I'm up for it. Mix it up, try new drugs, new combos, and basically, in her words: "It's our job to just keep you good, keep you going, keep you as healthy as we can, keep you alive. Because things change, we have new drugs, new treatments coming out all the time. Everyone wants that magic ticket, that fix, and our goal is to keep you going while the medical field keeps plugging away looking for those different magic tickets"

I guess I liked the way she said it, made me feel better. That being said, I think I'm still hoping someone will believe and give me a convincing argument that they can cut some of this junk out of me!

Hang in there Kathy! I'm in your corner!

[tawni's mom]

Yep, exactly Rhea! We are almost like 2 peas in a pod.
I'm doing the math and figuring from how much CEA drops after each treatment, I have 'hopefully' 4 more after today and 'hopefully' CEA will be zero, and 'hopefully' get a well needed & deserved break!!! (and 'hopefully' it is a long break and CEA stays at zero!)
I always like to have things organized & on a schedule. Getting told chemo for life throws a wrench in that system, making it as undetermined & unpredictable as possible. But must keep chugging along. I have too much crap to do top let this hold me back!

[jerun]

I am so sad and can't believe that my 87 yr old mom has a sarcoma in the muscle of her left leg...I took her to her doctor appt last week for a checkup and while we were waiting for the doc she said feel this... and I had the doc check it out and he didn't like what he felt and ordered a sonogram which showed the mass. They are pretty sure it is cancer and have ordered a CT scan and MRI...she's had the lump for a couple of years but she has several lipomas and thought this was just another... She has no pain and hopefully it has not spread... I just can't stand the fact that she has to go thru any of this...she has been crushed by my cancer... she lives with us in our granny unit so she is close...also she is in wonderful shape for her age.. Hopefully she can have surgery and this is the only tumor....

This has taken my mind off my PET scan tomorrow am...my CEA went up another 8 pts since last month so I don't expect too much good news coming my way... I've been off chemo for almost 5 months now so it's going to be decision time about starting up again....or not.
Anyway if anyone is still swinging chickens....I could use a couple swung my way.
CANCER SUCKS even more than it did yesterday.
Jeri

[jerun]

My funny port flush.... I've been on a chemo break for awhile and was way overdue for a flush....Just the thought of going into the chemo room had me tossing and turning all night before my appt.
My port moves around alot too and I've had problems with getting blood returns ...well anyway that morning I got my favorite chemo nurse (a man) and he was trying to get a grip on my port that is pretty low on my chest so "the girls" were very involved in the mix and we both were laughing pretty hard and I said go for it ...and he did ....and he stuck me and also got a great blood return...
I told him I hadn't had that much action since my last gyno checkup....

[tawni's mom]

Can someone explain more on "chemo for life"?

I' m guessing here...
1) Once CEA is zero, you get a break from treatments. CEA keeps getting checked and if it begins to rise you go back for chemo again. Knock back down to zero take another break til rises again? Repeat process for life.
2) Or do they go more on the PET scan, no light = chemo break? Lights up again back to chemo?
3) Or do the just give a break when CEA is zero, 3 months off then back to chemo regardless of scan/ CEA ?

Not real sure and would like to be able to make some sort of plans when I get a break, just to have a life again!

[dianne052506]

Tawni's mom,
In my experience, starting/breaking from chemo is much more dependent on CT scans, than on CEA, with possibly a PET scan thrown in there every couple of years when there is something inconclusive on the CT report.

In my case, after my original set of FOLFOX/Avastin, I had CEA checked every 6 weeks when I went in for the port flush, and had CT scans every 3 months. The first 2 scans were clear, but the third showed all these lung nodules that hadn't been there before. CEA at the time was well within normal. We decided to watch and wait a little bit, and did chest-only CTs for 3 months in a row. When the nodules started growing, I started back on chemo. That was February 2007. Since FOLFOX had worked for me, and I had no lasting problems with neuropathy, I went back on that. Did 4 rounds, every 2 weeks, then a scan showed shrinkage. Did another 2 months and things were stable. Still there, but not growing, and CEA was not rising. My onc thought that extending time between chemo rounds was better for me than an out and out break, so we started pushing the rounds out to every 3 weeks. When scans still showed stability, we went to every 4 weeks, then 5, then 6 weeks. CEA stayed good the whole time, and I had much more QOL.
I have no idea if that would work for anyone else. My onc and I both believed that I needed chemo to keep things in check, but every time I started having more bad days than good, we would lengthen the time in between rounds. At every 4 weeks, I had an additional infusion of Avastin in the middle. Amazingly it worked, and I got 2+ years of keeping the beast at bay that way before I became allergic to oxaliplatin and had to come off that. Only 2 months of just XELODA/Avastin and the things were growing again, so I went on irinotecan. Again, we hit it hard with biweekly rounds to begin with, then lengthen them some when things were stable.

What I'm trying to show is that there are no hard rules in chemo for life. You and your doc have to balance keeping the beast at bay, and you having a decent QOL. Usually the game plan changes quite a bit along the way.
Best wishes,
Dianne

[Rheaeliza]

I agree with Dianne, from what I have heard (Ps Dianne it's inspirational to see someone diagnosed with CC with liver and ovarian mets still going strong since 2006. I was diagnosed with the same in December 2012, primary colon plus liver and ovarian mets.)

My doc says CEA is just so not totally reliable for everyone. And that we go in strong with chemo when we are feeling strong, and give mini-breaks when we can. And breaks can come by just skipping a couple of treatments, watching scans, or even just staying on avastin or xeloda for a bit but giving a break from the irrinotecan and or the oxaliplatin (heavy stuff)

I'm on my mini-break, just skipping two treatments, but he did say it's my choice, it's okay to skip a treatment here and there when we are "chemo for life" to balance that quality of life thing. He did say that I could go on a longer break, and just keep a look out for my cancer symptoms to increase, but he's not that comfortable with that, and frankly neither am I! That scares me!

That's my understanding from my oncologist, it seems to be adjustable, fluid. Try this, try some of that, increase this, add this, take this away, keep you stable, keep you living your life. A bit science, a bit art, a bit guess work.

It's my birthday in June! I'm going skydiving! Taking a trip to vermont! Going upstate to a spa with my best friend! And visiting my dad in Michigan right before I start back up after the 4th of July! Gotta take these good days, I never thought a month of chemo would sound so good, so luxurious. I had treatment Tuesday and I feel better already than I have in a long time!

[annalexandria]

Can someone explain more on "chemo for life"?

I' m guessing here...
1) Once CEA is zero, you get a break from treatments. CEA keeps getting checked and if it begins to rise you go back for chemo again. Knock back down to zero take another break til rises again? Repeat process for life.
2) Or do they go more on the PET scan, no light = chemo break? Lights up again back to chemo?
3) Or do the just give a break when CEA is zero, 3 months off then back to chemo regardless of scan/ CEA ?

Not real sure and would like to be able to make some sort of plans when I get a break, just to have a life again!

I also think that "chemo for life" can in some cases get a person to the point where surgery is again a possibility. When I've read of such cases, it seems to always involve a very assertive patient finding a very confident, willing-to-take-a-chance, kind of surgeon.
And Jerun-I'm so sorry about your mom. It's insane that she has to go through this while you are dealing with your own battle. Whoever schedules this universe really needs to get his/her act together.

[Asterix]

Hi everyone. My surgery went well but took about 3 hours. Doc had to make 8 key hole incisions to work his way through all the adhesions from my original surgery to get the the lymph nodes, so I look like a pin cushion! He got both nodes and some surrounding tissue and was pleased with the outcome. He said it was a very difficult procedure and I am so thank yo for his skill in not having to change to an open procedure. I was only in hospital one night and am home now. Only a little pain around the abdomen but certainly not too bad.

Thank you all for asking about me, and concerned relative I have no problems with your post. I think Kathryn summed it up well.

So I guess I'm NED again for now, and we'll see what the pathology shows as I think he took some surrounding nodes as well for testing. He did say there were no visible signs of other cancer, ie peritoneal sand-like cancer that normally won't show on scans.