mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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Kathryn in MN
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mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Kathryn in MN » Sun Apr 21, 2013 7:27 pm

We have a stage IV thread for everyone - patients, relatives, friends, caregivers. We have a thread for wives of husband's with stage IV disease. Now we also have a thread right here for PATIENTS who are STAGE IV. Rather than starting new threads all the time for stage IV questions, please feel free to post here and keep in touch with other stage IV patients here, like the wives have done so well with their group.

This is a place where PATIENTS can say how they are feeling - they can vent, laugh, ask for support or ask questions, or give support and answer questions. If you are NOT a patient but choose to look in this thread, please do NOT be offended by anything a patient says. If someone needs to vent about their caregiver or family, please let them do it without interference - they are not intentionally saying anything to hurt you personally. There are different views from the patient side or the caregiver or family side. This disease affects everyone who loves a patient, and we all acknowledge that. But this is a place for the patients to feel safe letting out what they need to let out. Please respect that. THANK YOU!

If you have mCRC, please feel free to post your story here to get to know each other, and post any questions or anything new you've learned that might help another patient, or go ahead and vent if you are having "one of those days!"
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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

Postby skypup » Sun Apr 21, 2013 8:21 pm

Kathryn,

I'm very happy you started this thread. It will be nice to share info, concerns, rants, ...everything... with others in the same boat. No offense to caregivers or earlier stage patients (I've been both), but it is a very different ball of wax to have mets.

Thanks!

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

Postby kiwiinoz » Sun Apr 21, 2013 8:50 pm

Hi Kathryn

Thanks for creating this thread. I had been wanting to have a place like this but didn't want to post things in the forum where everyone would read, no matter what their situation.

I look forward to making use of this.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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

Postby aartist » Sun Apr 21, 2013 8:51 pm

Thank you. I have been here a year or so and posted once under a different name but seem to have lost that one.I am stage 4 and was dx august 2011. I just finished 3 weeks of radiation :( for a met to my shoulder and I feel wasted. I have no care givers and so far have managed with help from a few friends.
Stage IV sept 2011
colon resection oct. 2011
mets to liver and lungs
various chemos
2 month break
met to shoulder
radiation
back on chemo
progression
current 9/13 Panitumab

Nellie
Posts: 128
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Nellie » Sun Apr 21, 2013 9:35 pm

Great idea! Will post my 'story' soon!
Rt hemi.
5/12
Adenocarcinoma mod to poor diff. Poor diff accomp. by extensive necrosis
Mult. LN - pos.
Pt4a, pn2b
6/12 Ascites drain - Non malignant
12 rounds folfox completed Dec 2012
Ct scans looking good!
more of the same 1/9/13 folf without the ox.

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Ashlee H.
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Location: Southern California

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Sun Apr 21, 2013 10:38 pm

Kathryn - Thanks so much for starting his thread. How often have one of us wanted to post something, but didn't want to dash the hopes or upset someone who doesn't get "us". Let's face it, by the time you get to living with this for years, you've gone through quite a journey. We know the reality of our conditions. I know I've come very close to dying twice - and one of those times I prayed to die because the pain was so bad. But, I'm still here, looking forward to my 4th year from DX in July. I will eat cake! I chose to have one good friend who allows me to be completely honest about what I'm going through. She doesn't judge or push me to continue "the fight"...or as I like to call it "the race". I don't have to act like I'm well or put myself together. She knows my house is disorganized. And, she protects me from the people who want to help, but only give me added stress. We celebrate the days I feel well, and cry and pray on the bad days. This thread is like my friend - I know I can come here and be allowed to vent or celebrate and you guys will "get it".
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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

Postby kiwiinoz » Sun Apr 21, 2013 11:37 pm

Ashlee,
I have only started this journey and I hope I get to the stage where I can have lived with it as long as you have.
I have had some positive moments so far but I have a complete understanding that there is a great likelihood that this will be back at some point and that is something that I honestly fear.
What I find hard is the not knowing, crc has taken my hope and dreams for any future and put it into a cloud of uncertainty and I can't plan anything.
I went from having purchased our dream house a week before dx, to cancelling it as I had no idea that I would be around to continue to pay the bills.

My family considers me "cured" and it is just too hard to change that perception after having just lost my father to cancer 18 months ago. My wife knows fully what we may face but I don't want to burden her with too much and try to keep life as normal as possible (for both our sakes).

I have nobody I can talk to about this apart from those on this forum and another friend a few years older than me that has been 5 years from liver cancer, and 2 years from kidney cancer and does have a fairly good understanding of where I am coming from.

Even on this forum I have been reluctant to post anything negative for fear of dashing others hopes, or for fear of whinging about things that are not yet happening to me compared to other stage IVers.

I really think for me at least, that stage IV is as much of a state of mind, as it is a physical issue. There is absolutely no control we have over the disease and that is frustrating. My friend is rather like CR guy in his sense of humour and keeps telling me a joke which I am only starting to appreciate. Q) How do you make Buddah laugh? A) Tell him your plans. I never really got that until a few weeks ago when I was trying to plan things and couldn't due to not knowing how I would feel etc.

I really appreciate that there are other out there that are a lot further ahead on their journeys than I am, as it does provide some degree of hope. Thus I guess we have gone from hope from having a future that we planned, to having a future that includes my continued presence in a few years time. Amazing how your "hopes" change.

Look I don't know if I am making a lot of sense, but feel a lot better for the vent.

Please accept my apologies if I have offended anyone along the way.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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Ashlee H.
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Mon Apr 22, 2013 12:03 am

Kiwi - what a beautiful post. Most start this journey hoping for the cure (and some like Bev and SkiFletch succeed on this path). Then if it keeps coming back, you realize your disease is "chronic". Eventually, with continued recurrence, you realize (at least in my case) this is a terminal disease. But, everyone is terminal, aren't they? I do find my faith helps, but I'm not about to become preachy. I figure God knew the pages of my life when I was born. Many times we've mentioned everyone gets different cards to play out - you choose how you want to play those cards. I remember when I was first DX, had surgery, and had 3 rounds of chemo - when I took off to France for two weeks. My doctors tried to talk me out of it - but I went, and am so glad I did. Although I really haven't been able to travel much these days, when I have planned a trip I just make sure I can cancel it. I still plan trips - but now I also check to see what hospitals are in the area (just in case). I've had to create a new normal. "Things" really don't matter anymore. I've learned that I'm truly loved - what a gift.
I feel this thread is really going to help us Stage IV'ers. We can talk about anything - because we have paid our dues with this disease.
-Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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Ashlee H.
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Mon Apr 22, 2013 12:16 am

In the past, we've had threads about what we do to spoil ourselves while living with cancer. I think the most popular item was a great bed. I've got the great bed, and eventually added great sheets and pillows. I found a duvet cover was great - not heavy on the poor body, and easy to make the bed (and reminds me of my European trips). I don't use a top sheet anymore (it bugged the heck out of my neuropathy feet). Now I have a new comfort item. Great friends of mine are building me a lovely "zen" zone outside. I've been spending way too much time inside. The pavers are placed, fence about to go up...and then the flowers. One of my favorite places to visit is "Keukenhof" in Holland. If you do a search on Keukenhof and check on images, you can see my flower paradise. Of course my Zen spot will be only a sampling of Keukehhof, but to me, I'll be transported. Then I did a total splurge. I knew I wanted a really comfortable outside chair and found one. It's like the chair is giving you a warm huge. It rocks and swivels. If I was healthy, no way I would have ever spent this kind of money - but as soon as I sat in it - I just had to have it. It's also made in the US by a family owned business - I love buying US products. It's guaranteed for 20 years!!! I'm going to do my best to make use of that guarantee. I think often about what the last year of my life will be - and I want comfort, surrounded by things that make me happy.
So, have any of you spoiled yourself with some things to make your cancer journey more enjoyable?
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

jerun
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Joined: Sat Apr 28, 2012 3:38 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jerun » Mon Apr 22, 2013 2:37 am

Great idea...I'm in...
I haven't posted for awhile but still come here almost everyday.
I finished 3 weeks of radiation in March for my 2nd recurrence in my sacrum..Right now I've been off chemo for 9 weeks and have a CT scan May 1st. See onc May 6...chemo May 7th... My CEA is 76...YIKES
I can't believe what a rollercoaster ride this is...I want to get off....
I've decided that Feb is a bad news month for me and this colon cancer.
Feb 2009 DX CRC (stage 1)
Feb 2012 recurrence sacrum and lung
Feb 2013 recurrence#2 sacrum
Best to all,
Jeri
2/09 dx CRC
3/09 SIGMOID Resect (Stage 1)
2/12 Mets Sacrum/lung .. Rad to sacrum/FOLFOX/Avastin
Xeloda
2/13 PET: new 4.5 x 6 cm tumor in sacral vertebrae
3/13 3 Wks RAD/Sacrum

Asterix
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Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Mon Apr 22, 2013 3:35 am

Thanks for starting this Kathryn. I too have noticed many of the same things as everyone else. Kiwi's post sums it up well. I'd almost allowed myself to think I was over all of this, and then bam! my CEA was 14.9. It was a shock because I just happened to ask one of the nurses what my last CEA was, and he said it was 1.8 but is was in Sept 2012, so let's order one (I was in for my 3 weekly Avastin). Since is takes a day to come back, I just said "someone will let me know if it's abnormal?". So 3 weeks later and I am back for Avastin, hadn't heard anything so I asked the nurse what it was. She comes back and says she need to talk to the onc before telling me - not a good sign. My usual onc was away, so the cover onc said what did I want? CT? I said that my usual onc had also orderd a CEA for that day (he didn't know the nurse had ordered it) so how about we see what it said before worrying too much. He agreed. Stopped by my GP who was copied on the results and it was now 18. Then had to wait a week to see my onc, who then cancelled due to unavoidable issues and finally saw him yesterday. He agrees its most likely cancer activity, so PET ordered for tomorrow. I see him late Wed to find out the result. It's brought me back to reality that I'm not over this. If the PET is clear, we probably won't treat as he wants the cancer to declare itself, in case it resectable. If it shows something, we will deal with that. But I'm not even sure a clear scan is great news, it just means more waiting. Other people don't seem to get this. At least he said if it's the same lymph nodes lighting up as at the start, that may consider surgery since it may mean it's well contained and as he said "the surgeons get excited by that!". It's like people saying CEA's unreliable - I think a low CEA doesn't mean you DON'T have mets, but a high CEA (>10) almost certainly means something is going on.

It's amazing that in a minute you can go from feeling back to normal, to feeling like their is no future. How I wish I could go back to an uncertain long future, rather than an uncertain short future.

Sorry for the rambling, guess I just needed to spill my guts.
Last edited by Asterix on Mon Apr 22, 2013 4:40 am, edited 2 times in total.
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

kiwiinoz
Posts: 1125
Joined: Thu Jan 03, 2013 11:44 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kiwiinoz » Mon Apr 22, 2013 4:29 am

Asterix

Was wondering how you got on with the results and that is not good news. Sure, we can put a nice stage IV spin on it and say that stable is good, that no evidence of disease is better than progressive disease, but it still sucks in way that I think those on this thread can understand. No Evidence of Disease means something different for us than any other stage in that we know it is lurking there behind the scenes just waiting to invade your soft, nice little place of comfort that you have created.

That being said, resectable disease is better than unresecatable disease so let us hope that it pops up somewhere small, convenient and confined so that resection can be on the cards.

Don't mean to be blasé about this. On a different not I am heading to Melbourne for the weekend to watch some AFL with a NSW bred fellow that has moved to Melbourne and converted to AFL. My wife and I got some Swannies scarves and beanies to wear as it is Swans vs Hawks just to rib him as he is a Hawks supporter (they lost in the Grand Final to the Swans last year) so I am really looking forward to that.

My point is what will be with cancer will be despite worrying about it. When you get to that place that will allow some acceptance of that please try to have some good times. Really, what else do we have?

I hope that your cancer my stay hidden for a lot longer before it most likely declares itself.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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 Apr 22, 2013 4:37 am

Definitely intend to keep doing fun things. Since diagnosis I've sailed for a few days around Hinchinbrook Is (brother in law has a 30ft sailing cat), went skiing with my wife and kids a Perisher (and go the best snow in the last 5 years I've been going there), been camping numerous times. I plan to keep doing as many fun things as possible for as long as possible. While you're in cold Melbourne this weekend, I'll be camping with some friends on the beach north of Noosa, hopefully catching some nice fish. Have fun in Melbourne.
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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juliekei
Posts: 97
Joined: Sun Oct 30, 2011 8:33 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby juliekei » Mon Apr 22, 2013 7:41 am

Thank you Kathryn for creating this safe space. I had a bit of a breakdown Friday night so I am especially grateful to have a community to lean on. Last Tuesday I had my first CT scan after finishing 8 rounds of Folfiri in January. I was totally blindsided to have been told they found a 1.5 cm lesion in my abdomen. I had HIPEC last June and (foolishly) was not expecting a recurrence so soon. A PET scan on Thursday confirmed metabolic activity and I am having surgery May 2nd. I am having a colonoscopy this afternoon to make sure nothing is going on there.

My biggest question is how much time do I have left? I have two beautiful children (ages 2 and 4) and I am devastated. The surgeon says that I am "totally resectable" but I am terrified. I meet with my oncologist on Friday to discuss next steps. I am afraid of going back to chemo especially since it doesn't seem to be working for me. I appreciate that my doctors don't want to scare me but I just want the truth so that I can face the reality.

Thanks for "listening"...
Dx Stage 4 8/10 age 38 (mom of 2)
LH 9/10
5FU/Folfox
SBO surgery 8/11
HIPEC#1 6/12
8 rounds of FOLFIRI
HIPEC#2 5/13
VATS for 3 lung nodules 1/14
Xeloda & Avastin
SBRT 8/14
Fistula 4/15
Radiation to pelvic tumor 7/15
Liver/Peri mets 11/15

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Mon Apr 22, 2013 9:18 am

kiwiinoz wrote:
No Evidence of Disease means something different for us than any other stage...

...what will be with cancer will be despite worrying about it. When you get to that place that will allow some acceptance of that please try to have some good times.

Both are so very true!!! And not something that can be really known unless one has been here. Thanks for the clarity. :)


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