mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed May 14, 2014 7:50 pm

saw chemo doc. last of my che :cry: mo with Iren/Erb- MRI show 8 mm on liver and 5 on VIII of liver. Oh well
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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

Postby Guinevere » Wed May 14, 2014 8:04 pm

Well, that stinks on a stick, Jeanette! Do you any chemo options left?

Hugs & prayers ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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

Postby elise » Wed May 14, 2014 8:27 pm

Just saying hi. New to mCRC. Been around CC for a few years as stage 2 and NED.

CEA crept up steadily over a year but scope and CT were clean for 2 yrs. PET ordered and there is a liver met.

I'm back in the fight. As soon as I actually accept what's happened... :roll:

First I should figure out if it's stage 4 (like onc said) or rather mCRC only like a friend says. Man, I thought they were the same...

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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

Postby Guinevere » Wed May 14, 2014 9:22 pm

Elise,
I'm not sure but think they're one and the same like tumor & lesion. MCRC and lesion sound better than stage 4 & tumor. You'll not find better people to fight the fight with than here. Plus, we'll make you laugh sometimes too! I'm so sorry you qualify for this thread but am glad you're here.



God bless ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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Candyys03
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Wed May 14, 2014 10:53 pm

Hello my Friends!
I haven't been on my computer for awhile.I've had a bit of a setback and trying to stay positive.
On a chemo break but I am struggling to feel and get better.

I hope that all of the Mothers here had a great Mothers day!
I had a great mothers day. My 3 kids and 2 grand baby's came over.
My Daughter that helps me the most sent in our story to the newspaper and we were one of the 5 picked to enter the the Mothers Day Section.
She posted it on my FB.

Bev,
In my prayers!

Candy
DX8/0642yrIVCCmtsliver
9/06opcol+lymps
07oxy
08livernonop
08iri+erb
1/09opliver
NED11m
12/09lungmts
3/10livermts
NED7m
2/11lungmts
4/11NED3m
5/2Xel
9/26lungop
NED6m
3/12lungmtsirierb
11/27avas+ox
7/13Stivarga
10/28irierb
1/17
caringbridge.orgcandyllamas

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

Postby Annekimfrench » Wed May 14, 2014 11:22 pm

Hello All,

Thank you so much for your advice regarding oxaliplatin and the long-term neuropathy. Scrolling through the latest posts, I am struck by the courage and perseverance that is consistently shared- despite the situation.

Finding clarity on a foggy path is a challenge....

Anne

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

Postby skypup » Wed May 14, 2014 11:23 pm

Elise, you know how I feel about you, you are my little sister and I wanted so desperately for you to sail through in NEDsville forever. I am heartbroken that you have to deal with more. As to the stage 4/mCRC thing, it's appropriate to think of them as one and the same. If we are first diagnosed with mets, they call it stage IV; if we don't have mets, we are an earlier stage. If mets come later, it is officially called recurrent disease--but everyone, even the docs, just call it stage IV when there are mets, whether they come at the beginning or later on. Don't get caught in the labeling. You have a metastasis, but the thing now is to fight it. Since it is a single lesion in the liver, it sounds like it will be highly resectable -- which gives you some great odds at beating this thing yet. First you'll likely be faced with chemo to stop any further spread, then surgery. Maybe more chemo after surgery. The docs will get that all straightened out for you. Be sure and talk about surgery from the get-go, though. I'd want to consult with a liver surgeon sooner than later even if the surgery won't be for some months, just to set my mind at ease that that was where I was heading. There are so many here that are stage IV (or mCRC) but are apparently cured, like Bev and CRguy. I think there was even a thread a while back about people who have beaten stage IV disease.

I doubt there is any way around feeling lost and devastated with this news, this is probably the only way through. But you will settle into this fight with strength and spirit, I know. And I feel pretty sure you will win the war.
Last edited by skypup on Thu May 15, 2014 10:08 pm, edited 1 time in total.

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

Postby skypup » Wed May 14, 2014 11:35 pm

I want to ask some advice. I am thinking of sending an email to those who are closest to me, very dear friends and my brothers and SILs. I want to tell them (again) what I need from them, which I don't think is much. For those who live near, a visit on one of my two bad chemo days which only come around every two weeks. Just 15 minutes of a visit gets me through the 36 hours when I don't think I can do this much more. For those who aren't near, regular phone calls or cards to let me know I am in their thoughts would do wonders. I've told them this before, but they see me or talk to me when I am having a good day and just fail to really get the constant, ongoing misery that is such a part of my life. I want to tell them about tonight when my leg hurts so much I can't sleep, even after 20mg of oxycodone, and how I had my predictable vomit session that occurs without fail and despite nausea meds on my second night on the pump. I want to tell them never to take a pain-free night of sleep for granted. I don't want anyone to give up their life for me, I just want more connection on their part. I am so strong about all this that I don't understand why when I whisper that I am in pain that they don't recognize that is like a shout, really; they know me that well. Perhaps I am just expecting too much? I ask myself, would I really do better if one of my brothers were sick? I believe I would, that I would call on a regular schedule and drop a card in the mail every once in a while. Well, what do you do? What do you think I should do?

(And this is when I bless Kathryn for creating this thread once again.)

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

Postby skypup » Thu May 15, 2014 2:56 am

Elise, there was discussion about stage IV vs recurrent on page 4 of this thread. FYI, stages I-III are about depth of tumor and positive local lymph nodes with no mets, the T and N of the old TnNnM0 staging. The M refers to metastases... if one has mets, M>0, at diagnosis then one is stage IV.

As has been pointed out in some of the posts on this matter, to be a recurrent stage II gives you much better odds of beating this than someone who is diagnosed in the position you are today, i.e. with a single liver met. Seems your cancer is likely to be much less aggressive. I think it might have been kiwiinoz who found all that out, and you could search his posts or PM him for more info. (synchronous vs. metachronous (sp?) mets)
Last edited by skypup on Thu May 15, 2014 3:04 am, edited 1 time in total.

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

Postby Cherie » Thu May 15, 2014 3:04 am

Hey SkyPup,

My heart breaks for you. Knowing you are going through so much crap right now and the feeling of being isolated. I would let everyone know how you are feeling and tell them what they can do for you. Lets face it, unless you have gone through this no one really knows how crappy it is. I certainly felt alone and I had my daughter and husband there with me. Wouldn't it be amazing if we could walk in an others shoes. I'm sure you would have everyone knocking at your door to help. I would love to send you a card and some giggles from New Zealand. Send me your address and I will send you some treats from "down under."

Take care

cherie xox
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Thu May 15, 2014 3:25 am

Oh Skypup
I feel you! I live by myself, and as time goes on, I count less! I am not in to much pain yet and know that I am going to chicken out when that comes. They told me maybe 6 months to a year but each case is different. I am not sure what to do?
I would write letters - like guys I want to be brave on this journey but I need some help. Sit with me or read me the funniest jokes you have. Tell me what you would do with the 500 million lotto ticket? Skypup - what can we do - can we post here? It is 1am and steroids have me shaking so got out of bed and jumped on computer. I was so happy to see something here.
I called long distance to 3 friends and then my side effect kicked in and had to work for an hour to stop it. This treatment my nose is dripping blood. I just got AC and it may be to dry in 0 humidly ??

Note:- it is a bitch to be so alone. Only people who know can understand. Yesterday got a look of total discuss when they noticed my port - asked me - explained and they ran (power walked)...hum.

On the funny side - Doctor aid (better than doc) said No Jeanette that tumor isn't getting bigger - you are just getting thinner (dropped another 10 pds) and the bone tumors are showing up more! Stay Fat my friends - it helps to fight longer. :)
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Voxx66
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Voxx66 » Thu May 15, 2014 3:30 am

Skypup - they are your friends and relatives and you presumably know them well. You shouldn't be afraid to tell them how you feel and what you'd like them to do in order to make you more comfortable. They may assume you are more like me ha. I don't want anybody near me when I feel bad and I certainly don't want to let anyone know many details of what I am feeling (outside of this board). They may assume they are giving you space. (Or they may just not know what to do) So yes. Let them know as it will better for every one involved.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Thu May 15, 2014 3:33 am

gwen
yes I love this site. It does feel like kinship! Sisters and Brother of the soul! Someone who understands the pain, the hope, the despair of slips. The "what else". can happen. :( MRI- PET CT...

so fellow iv's what do you think of "should I do this if time is limited"??? I was thinking of getting some teeth pulled? or getting a crown redone - I did invest in AC yesterday but that was for who ever gets my house.
WHAT are you doing in the time you think you have left? would be interesting to know!
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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

Postby elise » Thu May 15, 2014 7:30 pm

SkyPup, which are the bad days for you?

I do think that family want to help but often they don't know how best to do that. Bring a meal, walk my dog, come for a short talk, pick up groceries... I think deep down, they want to know. Try an email with specific dates.
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Thu May 15, 2014 8:31 pm

Hey, Jeanette, sorry you are having nose problems. Are you on Avastin now? When I was, during the winter with low humidity, I had to get some stuff (I got a brand called Ayr) to moisten my nose. It helped quite a bit. You are a trooper and I'm sorry you are having such issues. It is hard to do this without a partner, for sure. Yet there is a part of me that thinks it might be easier in some ways, too. I do what I want when I want, and don't have to keep up a strong front for someone else's sake. Like all things, I guess it's a mixed bag to live alone...

Voxx, thank you for your input. Most of the time I am like you, I want alone time mostly for the bad days. It's just that I wish my brothers understood this is serious and we won't have that much more time together. But I do remember when the timeline seemed to stretch to the horizon, though, so I understand but do not like that we are in different places. On the good front, one of my SILs did call today, so am feeling less alone.

Re: my pain, that I've talked a lot about. I drew a short straw in that my mets are pressing on some nerves, but it isn't the pain that comes with bulky tumors and advanced disease, so while it's a pain (literally) to deal with, I am not kicking off anytime soon. Don't want to give the wrong impression. I went to a neurologist today (because I sure need yet one more doc on my team); she and I talked about nerve blocks and RFA to help block the pain. Sounds promising and I am going to see about having a nerve block when I go back to MDA in a month. I like this option a LOT more than taking more pain meds.

Jeanette, about "should I do this if time is limited"... Last year I had a root canal and a crown rather than pulling a molar, but had to think about it a lot. It's not like I have tons of money. Just recently, I have started to redo my townhouse. It was stuck in the 80s with mauve carpet throughout, flying artichoke wallpaper in the kitchen, and yucky floral wallpaper in the bathroom. All that is gone and I have sooting blues on the walls. The new flooring will be in over the next two weeks. I have taken the chance to only put things back on the shelves that I REALLY want to keep. This is hard because I am doing it for two reasons. The first is that I really like minimal clutter. The second is that there is a part of me that is readying everything for when I pass. I already have super-simplified my finances, now am culling stuff. It feels good and bad at the same time. But I know the end result is that I will get to live in beauty for the rest of my time here. I used to travel so much, spending time in nature was my big thing, that what my home was like didn't matter that much. Just a place to stay.

Hugs to all!


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