mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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skypup
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Thu Nov 27, 2014 10:17 pm

I know what you mean, Nick. Sometimes I feel great and grateful, and sometimes I am just down. We can make the best of a bad thing, but it still is a bad thing, seems to me... And I don't think people who are NED or are still curable, or who don't have to suffer chemo with no end in sight can get the whole depth of feelings we have to deal with. How do we manage?

Thanks for writing, everyone.

Asterix
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Fri Nov 28, 2014 4:50 am

I hear you too Nick and Skypup. Today was my 3 year cancerversary. I'm still spending nights in hospital, mainly by choice, but go home every day. I'm getting my hospital bed at home on Monday, and have managed to ditch the syringe driver for oral meds. I still have a subcutaneous butterfly to use for morphine break through, but I don't need that much. I may be able to change it to oral liquid morphine and not have any things stuck in me. Should I be happy I might be home soon on only oral meds and a patch instead of dying a few weeks ago like they thought I might? I guess so. But sometimes it just seems like delaying the inevitable. Or can I recover enough to go back to living life as I was before? I hope so. But for how long?

Before my recent problems, I knew things were not great, but day to day life wasn't too bad that I could live in the moment (except when the pain flared up) and things were ok. But since then, my mortality has be thrust into my face, and then slowly taken away and replaced with some hope. I feel better (but weaker, I have lost almost 20kg), my pain is controlled, I'm hopefully treating my cancer and I may get back to a place were I cannot worry if my time is up within a few weeks or not. But has anything really changed?

I have a friend who was diagnosed with lymphoma before I was diagnosed with cancer. It was a rare and aggressive type, and he wasn't given a good prognosis. At the last moment before bone marrow transplant, he went into spontaneous remission for over 3 years. Then a few weeks ago it came back. Donor now found, and he is going through the full on chemo to kill his immune system before his transplant. So although things are grim, he does have hope for a full recovery. Something that isn't afforded to us.

Sorry if I don't make sense, but it felt good to ramble on a bit. Excuse typos if I made any.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

skypup
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Fri Nov 28, 2014 2:54 pm

Asterix, you made so much sense that the only word I have is "profound." My expiration date is on the order of months, maybe even a couple of years if I remain extraordinarily lucky, yet I can feel what you mean when you ask if recovering is only delaying. Even if we catch a break again, we still live with mortality and the price of continued treatment up close and personal. I feel like I have learned so much and that I have gained a wisdom that I was meant to accumulate in this lifetime, yet this disease closes off so many dreams of the future that I would be having otherwise. I don't even know how to dream anymore, but at least we know how to live today better. I guess that is something.

Cb75
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Cb75 » Fri Nov 28, 2014 5:50 pm

Now that I am on chemo for life, I get it Skypup. It's quite the experience to live with the axe of death hanging over your head. I do believe that ANYTHING is possible. I don't accept stats and know that I am a unique individual with a unique cancer (to some extent). I also know of those who have had a 'spontaneous" as well as a 'radical' remission. The power of the mind and body is quite significant, more so than I ever could have imagined. However, the reality is what it is. We, on this thread especially, know what that reality is. No one else, except for those in a similar position could ever understand what it is like to live not knowing whether its life or death which will come with the next scan or test. What I can say, is that this experience has forced me to really search deep and question so many things, both physical and spiritual. In some ways I feel things now that I NEVER felt before. I see things with clear eyes in a way I never did before. I love deeper and I also hurt more. Everything is intensified.

I hope this makes sense....

cb <3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

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pollo65
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Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Fri Nov 28, 2014 6:40 pm

Guys I totally get it. In three months I will be six years from diagnosis but with my last scan being "stable" I know the tumors are still there and every scan is a guess. What will it be, has it grown, will I do more chemo of they are growing?
I don't make plans for the future and I miss that, I just miss thinking about getting another dog when mine transitions and I worry if I will leave him alone if I go.
I guess as stage four s it is just the way life is and I am truly grateful that I still have all of you to understand me and where I am coming from.
Pollo
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

skypup
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Fri Nov 28, 2014 11:50 pm

How old is your dog, Pollo? I, too, miss dreaming of my next dog. Seems I measure my life in dog-lives. I made it to five -- Holly, Skipper, Loki, Shelby and Sky. who is a couple weeks short of thirteen. Thought I'd get to love a couple more before I was through.

Dreams... Who still has them and what are they? I really don't have a bucket list anymore. I did earlier on, but now just try to be moderately happy each day. I'd like to have more dreams, but many of the things that used to matter, like traveling, seem kind of meaningless now.

Cb, I like your sense of hope. Thanks.

Rubyslipperz1
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Rubyslipperz1 » Mon Dec 01, 2014 3:52 am

I am glad I got on here tonight after taking a break since surgery in July. I crushed to read about Gwen but glad to see others of you keeping the post going and staying as positive as possible. I am 16 days from my 1 year anniversary and we spent the last year ignoring quality or life and doing intense chemo, surgery, and "SIRT" radiation. The liver re-sect I had desperately hoped for, was not possible. One surprise during surgery they found was tumors only ovaries so on top of all this, I have been thrown into early menapause. It can be pretty funny watching my husband pile on blankets while I sleep with windows open in Chicago!
starting in Jan, I will begin constant chemo and live with my cancer like diabetes only "chemo is my insulin" that is what my super-positive Onc likes to tell me and I just play along and refrain from screaming I would take insulin over chemo any day!!!!!
Not sure why I am sharing except to say there are still some of us lurking when we probably could benefit from participating more. I begged for a 6 week break and speaking of bucket lists, I plan to go to NY, Puerto Rico, and a week in Orlando before starting the log term chemo plan. I guess I still dream even though each of these trips will cause a week of constant sleep post-return. Here's to our holidays, let's stay together and make 'me count.
38 F mom DX 12/13
Stage IV CC w/ mets to liver,lung,& lymph nodes
10 rounds chemo
7/11-failed liver resect but removed tumors in colon and lymph nodes
10-11/14-SIRT
11/14-1/15-travel-Palooza
3/15- chemo folfiri and Avastin (every 2 weeks 4 life)
7/15-emergency back surgery
2016-Folfiri/Avastin e/o week took 2 month break and cancer thanked me by spreading to lungs, pancreatic lymph nodes and increased +30 tumors to liver

skypup
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Dec 01, 2014 12:25 pm

Ruby, I get fairly frequent breaks from chemo and those breaks really help in the long run. However, I have been very clear with my oncs and myself that I am in this for quality over quantity, and I accept that chemo is not a cure (some feel differently.) Your decision might be different, but I do want to warn you that with many (most?) oncs, you have to be VERY clear if you want to get any kind of break in the chemo-for-life routine.

Thank you for writing. This forum is so valuable -- where else can we compare chemo-for-life regimens or share the frustration of being told chemo is like insulin (ha!)?

Rubyslipperz1
Posts: 45
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Location: Chicago Area

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread- ONGOING

Postby Rubyslipperz1 » Mon Dec 01, 2014 1:43 pm

Sky pup and question for all
Thanks for responding. I have a question for others in my similar position, have any of you moved closer to "home" or family when you hit the chemo for life stage? I am 3.5 hours from my family and my husband's family and many lifelong friends. However I have top notch care now that I live in a metropolitan area and I have made a nice village for myself the past few years so we definitely feel love and support here. Just curious if anyone uprooted family to be closer to family?
Thanks!!!
38 F mom DX 12/13
Stage IV CC w/ mets to liver,lung,& lymph nodes
10 rounds chemo
7/11-failed liver resect but removed tumors in colon and lymph nodes
10-11/14-SIRT
11/14-1/15-travel-Palooza
3/15- chemo folfiri and Avastin (every 2 weeks 4 life)
7/15-emergency back surgery
2016-Folfiri/Avastin e/o week took 2 month break and cancer thanked me by spreading to lungs, pancreatic lymph nodes and increased +30 tumors to liver

PaulC
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Facebook Username: paul.campbell

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby PaulC » Mon Dec 01, 2014 2:06 pm

Hello everyone!

I am approaching my 1st anniversary also. Started my chemo-for-life back in late September after 12 rounds of FOLFOX. Feel fine now except for the neuropathy in my feet.

I was just thinking about this the other day. I feel fine now but for how long? Everything is stable, none of the tumors are growing. Every little twinge I feel, every new ache I think to myself, "Is it starting now?" I try not to dwell on anything negative but I'm not always successfull in keeping the negative thoughts at bay.

I have chemo this week, had my blood work this morning. 5FU is ok, nothing like the FOLFOX but still........
StageIV CC dx 1/14, TXNXM1b
Mets to liver/lymph nodes chest/pelvis
FOLFOX 2/14, finished after 12 cycles in 8/14.
6/24 scan, shrinkage, no new involvement
4/27/15 scan, no new involvement, shrinkage in liver mets, slight growth to lung met
5FU + Avastin summer 2015.
FOLFIRI started on 9/23/15
Folfiri + Erbitux started on 12/3

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Dec 01, 2014 2:20 pm

Ruby, I decided not to move after dx because my "family of choice" is so strong, so I'm quite a distance from biological family (who did ask me to move by them.) Medical care, continuing real life, and day-to-day support are what have helped me most, though early on I thought about moving to a place I'd always wanted to live because of the beauty of the place.

Paul, I've been doing this for years, and the "is this the beginning of the end?" feelings never have completely disappeared. I don't fret nearly as much anymore, though. I think it just takes time -- and getting worn down! What chemo are you on? Has your onc talked about chemo breaks at some point?

PaulC
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby PaulC » Mon Dec 01, 2014 5:02 pm

SkyPup, I'm on 5FU/Avastin now.

I just came off a short break. My schedule would have had me getting treatment last week. I asked her if I could not have chemo before Thanksgiving and she was fine with it, she put it, "it's a marathon, not a sprint". I have a treatment this Wednesday.

I visited a friend on Thanksgiving day, when I walked into the house, my friend's brother and his girlfriend were there. I could see in their eyes they were expecting a different appearance. I have not seen them since last year and their initial look of mild shock changed to relief when I explained my treatments so far and what was planned for the future. Most people hear that someone has been diagnosed with cancer and expect the worst I guess. I don't blame them though.

My friend, who's house I was visiting, I have seem him numerous times over the course of the last year, he had probably told them of the diagnosis, they were expecting a much different appearance.

It's easy to get mentally worn down, it's a constant struggle to stay positive but it's a struggle worth continuing. What choice do we have?
StageIV CC dx 1/14, TXNXM1b
Mets to liver/lymph nodes chest/pelvis
FOLFOX 2/14, finished after 12 cycles in 8/14.
6/24 scan, shrinkage, no new involvement
4/27/15 scan, no new involvement, shrinkage in liver mets, slight growth to lung met
5FU + Avastin summer 2015.
FOLFIRI started on 9/23/15
Folfiri + Erbitux started on 12/3

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Mon Dec 08, 2014 5:20 am

Well, been a but quiet in this thread again. Thought I'd share some good and some not so good news.

First the good news. I've had 3 lots of irinotecan / 5FU now and minimal side effects. My CEA is dropping (it started at 6000, and now down to 4500 or so, I know, very high hey?) but more importantly my liver function is improving. They are more concerned / happy about my liver function so I guess that's good, and they also said that seeing such an improvement after only 2-3 weeks is great. I've become neutropenic today so needed the shot to boost the white cells, they are picking up so they'll test again tomorrow to see if I can have chemo.

Now the bad news. Last Friday, my 96 year old grandfather passed away. That evening we had to put my 12 year old dog down. We think my dog had a spleen tumour. I couldn't be there with my dog (Kelpie X, Sasha) so my wife had to go and say good-bye and hold her. We had to tell our 7 and 11 year old daughters that their great-grandfather had died, and also their dog had to be put down. So I real crappy day. Of course, not only is my wife and kids missing of them, the death and seeing how my kids handle it just brings my situation into clarity for my wife and myself. This would be hard enough without me being in my situation.

Anyway, we are getting there and hopefully I'll be leaving hospital soon and staying at home. I'm on IV antibiotics due to a small sore of my calf and being neutropenic, but that shouldn't be for much longer. Still going home most days, just spending nights at hospital.

Thanks for everyone else in responding. We need to keep this thread going.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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Bev G
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Mon Dec 08, 2014 8:01 am

Hi Paul,

There sure WAS a lot of sad news in your post, so really happy to see some good news as well. I'm so sorry about your grandfather and your puppy. What a huge loss and huge sadness. A lot for the whole family to adjust to.

It's great news that your liver is behaving better. Yeah, your silly CEA is still nuts, but it's way better nuts. My math abilities are very bad this early, but isn't that like a 30% reduction? Sorry about your infection, and hopefully that will be resolved right away so you can get out of there.

Try to hang in there. So many thoughts and prayers are routinely going out to you.

Love,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Dec 08, 2014 1:18 pm

Ah, Asterix, I'm glad to read you are getting better, may it please continue. But so sorry to read about your grandfather and your dog both dying. It's hard enough to deal with those big life hits, but I know what you mean about bringing our own situations into clearer focus. Especially when you see it reflected in the eyes of your children. Please keep us posted on how you are doing!

Me, I am procrastinating taking my shower this morning because I then have to go to the infusion room for my Erbitux. The good thing is that there are very few side effects, at least of the sick/gut kind. My skin and hair look like crap. Fortunately, make-up and good wigs help with that, although I've never been one to enjoy playing with make-up. I'd love to take an Ativan this morning because the nurse who can usually hit my port on the first go (it's a difficult one) told me last time she is transferring and so we have to let another nurse take me on. I've had so many bad experiences with inexperienced nurses, it has me a bit worked up. But Ativan and the benedryl I have to take pre-Eerbitux don't play well together. Well, I guess it's time to put my meditation practice to the test. Ha!

I hope we can keep this thread going in some form or fashion. The rest of the board seems to have taken a tack that doesn't feel like "home" to me. I like to think I have a sense of humor, but I don't come to this forum to joke around so much when we've lost so many, and so many of us deal with ongoing big stuff. That's just me and not a complaint in general, but I just want to have a little bit of my beloved support group remain available. It seems that many mCRC folk tend to go off on their own at some point as things get drawn out or too difficult. I just think that this forum should remain a place where seriously ill people can still come for support. I don't think I am saying this well at all, but I hope some of you reading this thread understand. I better go get that shower now. Yuck, yuck, yuck.


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