mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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

Postby Candyys03 » Thu Feb 27, 2014 12:55 am

Hey, Where is everybody? :roll:
I hope that everyone is doing well.
This week is going by fast.
I am doing one more of my bucket list. Still can't find my old bucket list so I made a new one. :)
Going out of town this weekend, rain or shine and I will tell you all about it when I get back. I have lots to do besides blood test tomorrow.
We are going to get big rainstorm here in CA. :cry:
CA does need it but... next weekend would be better.

Gwen or anyone else=If I post anything it will be on my facebook.
I will not have my computer with me.

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

Postby Candyys03 » Thu Feb 27, 2014 1:23 am

I am so sad to announce that our dear friend Becky (Becmac) has gone to heaven.
This is the message I received-

"This is Ben, Becky's husband. My dear wife left this world last Thursday, Feb. 20.
I don't have a good handle on using this site, so I will reply to you in hopes that the message gets out to those who knew her online. I will be glad to share anything about her passing that may be of help to her friends here. She thought a lot of the folks she met and corresponded with here."

"I will tell you that Becky showed great courage, and that she was surrounded by her mother, daughters, and myself for her final days, and especially at the end."

My prayers go out to Ben and the family.
Candy
(I am posting this in the main topics too.)
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
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Guinevere
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Thu Feb 27, 2014 2:04 am

What horrible news! Thanks for letting us know, Candy. Damn this disease. I'll be praying for her family.

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

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

Postby jeanette57 » Thu Feb 27, 2014 9:12 am

Wow what a week.

I asked my family to take me to hospice but the monsters declined. They want to get me over this high temps and GI blues. We are waiting for Cdeff results. :P

I am weak, doing table spoons ever few hours just to have some foods. The only thing staying down is can yams and greenbeans. Go figure mom fixed it, couldn't do the meat but rest is ok. I am finding the fatigue is so bad that I don't even talk now, just thumbs up and down.

My temp broke this morning along with ostomy bag. The bags can't handle the liquid what a journey. think I am going to have to talk to a lawyer. I told the family hospice helps you die in peace - they give you so much meds that you go. That was not something mom wants to hear. oh well. My bucket list spa is next weekend and I prepaid so guess I will go and let my friends help me around. .

sorry this is a downer, to tired to be anything else. did have waffle for breakfast so maybe this next month is going to do ok. I am sorry this journey took another soul. Heaven is getting crowded. :x
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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pollo65
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Thu Feb 27, 2014 11:40 am

Jeanette is right, heaven is getting crowded. maybe it is the rain or maybe it is another passing but this is getting too real!!
pollo 65
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

Mard1012
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Mard1012 » Thu Feb 27, 2014 2:56 pm

Hi
Thanks for the welcome. Dr told me B6 100mg 2x a day and Udder Cream for hands. My feet so far are ok. Dr decreased something this cycle so it's much better. The fatigue is the worst. Oh and the watery eyes. Can't read, it makes it worse. And the cold windy weather in upstate NY is not helping!
Cycle 9 is Tuesday, I'm so tired of the pump. It gets in my way. But only 4 more and then I start something else but from what I hear there is no pump!
So will I be less tired on the next maintenance drugs? I hope so. I have a couple of really good days when I do a lot and then I'm exhausted for the next few days. Today is an exhaustion day. I spent a while trying to get our internet back up. Finally got that running and now I'm back in my chair with my quilt. :(
Sorry for the complaining... I know it could be a lot worse... I'm not a sedentary person, well now I am. I was very active so the sitting is really annoying me!
Thanks....
Martha :D
Female age 62
Stage IV liver Mets
9/9/13 right hemicolectomy
5/15 lymph nodes
9/30/13 CT found liver mets and blood clots
10/22/13- 5/13/14 FOLFOX6
4/21/14 Emergency CT
Maintenance 5/27/13 -6/17/14
FOLFIRI 7/29/14-10/14/14
CT 10/20/14

I want to live!

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

Postby janeandrea » Thu Feb 27, 2014 4:04 pm

It seems like every time I log on here, I learn of another's passing. Stupid disease.

There is quite the long story behind this, but today, after declining more treatment (I can always change my mind, but doubt I will), oncologist guessed I have about 6 - 8 months. That was a hard reality to hear. I am having a hard time wrapping my head around it.

Yes, I know it is just a guess, and numbers are very often wrong - they have been with me so far. I have outlived 2 different "expiration dates" and actually came back from the dead in 2010! But I feel something has shifted, and my luck is correcting itself.

Are any of you dealing with similar right now? That is, I know some of you are, but I guess what I want to know is how you are wrapping your head around it. I've lived with Stage IV so long it was becoming to feel like a chronic disease, but as I said, I think we are on the other side of that. So any wisdom, shared experience, anything, would be helpful from those who are in a similar situation.

Thanks,
Jane
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all

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

Postby skypup » Thu Feb 27, 2014 5:25 pm

jeanette57 wrote: I told the family hospice helps you die in peace - they give you so much meds that you go.

I hope you are joking, Jeanette. This isn't what hospice does! They definitely help us die peacefully, but they don't push us along that path! In fact, studies have shown that people on hospice tend to live longer… and better.

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

Postby Ashlee H. » Thu Feb 27, 2014 6:20 pm

janeandrea wrote:Are any of you dealing with similar right now? That is, I know some of you are, but I guess what I want to know is how you are wrapping your head around it. I've lived with Stage IV so long it was becoming to feel like a chronic disease, but as I said, I think we are on the other side of that. So any wisdom, shared experience, anything, would be helpful from those who are in a similar situation.

Thanks,
Jane


Jane - I'm with you in that boat, and I wish it were a smaller boat. Whenever I've stopped treatment it has always been because there was no "joy" in my life. I've just stopped treatment again, along with stopping work - both may be temporary, we will see. Right now I'm just concentrating on getting my strength and mobility back. My ONC is doing the research to see about non chemo options. I know in two weeks I'll be feeling pretty awesome and will probably start meeting friends for lunch - ones I've put off for too long because I'm too tired or couldn't eat..or just felt like crap and couldn't sit through a lunch with chatter. Although I had my legal paperwork done, I wanted to make a few changes, so I did that so I know everything is in place. Money is always a concern, but for the next few months I'm just going to try and really enjoy every day. Like you, I've been dealing with this so long that dying isn't a fear anymore. I know this will kill me. But I will be damned if I let cancer take away the happiness and joy of my good days. On bad days it helps me to compare myself to others I know with much worse challenges than I am experiencing with cancer. When I'm around people, I try to leave them seeing me in an upbeat mood. I'd like them to remember me as enjoying life. The person who is to be my caretaker at the end has been told no one, except for a very small list, gets to see me towards the end. I want people to remember me smiling.
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!

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

Postby janeandrea » Thu Feb 27, 2014 6:45 pm

Ashlee H. wrote:... Like you, I've been dealing with this so long that dying isn't a fear anymore. I know this will kill me. But I will be damned if I let cancer take away the happiness and joy of my good days.


Thanks for your reply, Ashlee. Y'know I've always said I don't fear dying (just dying in pain), and I think that is mostly still true. But it has never been this "close" before, so maybe fear isn't as nonexistent as I thought. Or maybe it is fear of running out of time, rather than death itself. I mean, I just thought - damn, if the timing thing is right, I'll never have another Christmas. I've had this so long, it almost felt like death was closer than for most, but still very far away. How do I know what is important? How do I prioritize things? I just am having trouble, as I said, wrapping my head around it. I am not going to hospice yet, but I am starting the in between step - we have something that is not quite hospice, but still supportive palliative care. So feeling as good as possible is important, so I CAN enjoy as much as possible the time I have left. It's just that 6-8 months sounds so frigging SHORT.
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all

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

Postby jeanette57 » Thu Feb 27, 2014 9:45 pm

Shame face :cry:

Well had a nice talk to family. They reminded me that I have never been in pain (a level4 is highest) and I was weak and not eating, spicky temperatures and they just wanted to get me over this hump or bump. Ok, so today felt better, got to eat a few bites more, shame on me- I forgot how blessed I am!

I have enough things to be happy, enough faith to believe, enough family and friends, so who am I to get all just end it now. God and I did some talking and let me know I am not doing my next life lesson. However, friend came over and just for a second feel like feather running over my face. felt the love.

So I am not in a good mood, feeling moody, crying lots for no reason and wishing I can bounce back - but need to re-group and try to enjoy the day.

P.s years ago went to lecture that time is NOT straight, time folds and bends, so one hour today can feel like a week. don't think 6 months. It really is going to be fun thinking that when high on mineral spings in Phoenix az., can't wait. :roll:
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 » Tue Mar 04, 2014 1:59 pm

So glad you're not ready to leave us, Jeanette and glad you have support even when you're feeling grouchy. There are few things better in this world than to know you're loved no matter what. I'm blessed like that too!

I'll find out next Tuesday (11th) if I am getting into Ashlee and Jane's rickety-a$$ed boat. I hope, if I have to join, I'll have more than six months. My new goal is to see Christmas through the Princess' eyes and I'm pretty determined to do that. Of course, the cancer may have other ideas.

I haven't been afraid of death but fear the pain. I also relate to not liking the feeling of things being left undone. I hope on my chemo break, if that's what I get, to being able to get some things finished. In the larger scheme of things, most of the things aren't that important but they are to me.

I told DH that I'm surprised at how fatigued I still am! It's all I can do to drag myself through the house. My mouth hurts, my feet hurt, my fingers hurt, my eyes are constantly watering and allergies are choking me. That's my bitch of the day.

My blessings? I have a wonderful husband, two fantastic and loving sons who are married to the loves of their lives and two amazing granddaughters as well as having the love and support of my mom, siblings and their spouses and offspring and wonderful friends. I'm not quite at the debilitated state and I'm thankful for that as well.

Let's keep this thread alive, guys. I smile when I see it and see our beloved Kathryn's name as the thread starter.

Love and God's blessing to us all ~
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

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

Postby jeanette57 » Wed Mar 05, 2014 1:55 am

Thanks to all

Well, I was jazzed to go to the spa for the weekend, got the car oil and wheels checked. :D What foods to bring, or eat out at subways. Then called the wound clinic to ask about wrapping in plastic the foot. OOPHY - no way can I get into a hot mineral spring spa. I had to cancel. **&&^%%%% and a few more words. It is ok. They knew that tomorrow is the 2nd at this new chemo VECTIBIX. So oh well, going to take friend out for African food and movie. It was a nice try and may do so in Oct. It was odd day, had another friend stop by and had a lady that may be a caregiver. I am not sure yet. She is biking around the southwest to enjoy tent camping. she is a retired nurse but the only thing I will not put up with is smoking. She said she only smokes 5 a day and she has asthma. Duh :shock: She would sleep in my bed room and the AZ room goes to ex-care giver now sales man?

ANY ONE KNOW WHAT ----GENERAL DETERIORATION---MEAN?????? It is the second most common side effect. great my brain is not working. the only side effect 2 weeks ago was bladder leaking and dribbling, so thought it was UTI but not sure now. I hope all goes well tomorrow as I LOVE having a week off in-between. The other thing crazy is my hair is becoming fuzzy....wow I never expected to see hair again, so gave all hair products and jewelry away,

Hugs to all of you, I love this thread - it is like a family chat - a shoulder to cry on - a gentle nudge to respect and love all that we have been thought and all the hope and prayers we use to walk this journey. :wink:
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 Mar 05, 2014 1:04 pm

What a bummer, Jeanette, that you can't go to the spa! I hope you're able to sort of give yourself one at home. Have someone give you a massage, take a bubble bath and then eat something you like.

I pulled a "grandma" today. Back in the day, when my grandmother was going through her own colon cancer battle, she would pull stuff out of the drawers and closets with the thought that she would get stuff sorted and weeded out. Unfortunately, the very act of pulling the stuff out would exhaust her to the point, she couldn't do what she planned on doing. My mom would come home from college and/or work and have to put stuff back. Last night, I bought a bunch of Rubbermaid containers because my containers have just disappeared into thin air. :roll: I had decided that I wanted to put them in a more convenient place. Well, I need to wash the stuff that's where I want to put the new plastic so I loaded up the dishwasher and let it do the washing. Now, everything's dry and I'm too damned tired to clean the shelves and then rearrange the plastic ware. :roll:

Scan on Friday and I'm getting more and more tense. Of course, that doesn't help with the fatigue either.

Have a blessed day ~
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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Mar 05, 2014 11:09 pm

Oh so funny! I get things out and then nap, I have to get tax stuff done soon and yicks it is Ash Wednesday so everyone wanted to enjoy going out for fish. no way

I went for chemo today and no chemo. Lots of magnesium and blood transfusion tomorrow. Oh lord another long day. I got home didn't even shut the inside door at 4ish and slept till 8 and yicks the house was cold. I have my port in so am sore.

Good news and Bad news, my CEA is really going down, bad can't figure out where the blood is going. not to bag, not anywhere. I lost 17 pounds last week, and have not felt like eating.

I did get a peanut butter sandwich down today so some protein. Darn they had wild rice with mushroom at lunch but couldn't get more than one bite down. They made me eat a popsicle - it stayed down. I will try pickle juice also tonight. Dry skin is also a problem now look like snake with 6 inches patches falling off. Freaked mom and doc when I did show and tell. Well mom ran in and got me some cake so I am trying to eat it. white stays down - chocolate doesn't - just love trying to talk to body.

Then next step in GI blues more meds but now suggesting no solid food. Ground meats, soft veggies, cooked fruit, protein powder and will try some of it. I need to get pre and probiotics and can't have Whey or milk by products. Getting interesting to eat. hum fat all my life and now have to force food down, GOD has one heck of a sense of humor. :roll:
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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