mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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

Postby Guinevere » Thu Mar 06, 2014 12:39 pm

jeanette57 wrote:... GOD has one heck of a sense of humor. :roll:


He does at that, Jeanette! I hope you're able to keep something down.


Tomorrow is Wear Blue for Colorectal Cancer Awareness and I already have my blue outfit out to wear to my CT scan. I'm having a monkey day today. Trying not to be nervous but not having much success.

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

Postby Bev G » Thu Mar 06, 2014 12:45 pm

Gwen, MQFTB, thinking of you and praying for your scan tomorrow. Everything crossed that the scan tomorrow is much improved!

Love you, girl!


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

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

Postby southernkiwi » Thu Mar 06, 2014 3:27 pm

Hi all, just checking in to say hello, and to let you know I'm thinking of you with all the various trials and tribulations you're dealing with. I hope things settle down for you soon, Bev. Having things fall apart on so many fronts must be exhausting.
I'm doing OK at the moment. A beautifully sunny day like today always helps. My main challenge is to try & unravel all the minor aches and pains - caused by tiredness? Lack of exercise? Diet? Stress? Tumour growth? Probably my main challenge is to stop fretting about it and go for a walk, which I'll do now, once I have fed the chooks...
Cheers, Carolyn
Southernkiwi
Diagnosed Apr08; MutYH Associated Polyposis
Surgery (J-pouch, ileostomy) & anastomotic leak Jul08
Chemo (XELOX) Nov08-Apr09
Ileostomy closure May 2010
Liver met 2012
Inoperable lung mets April 2013
And liver and chest wall mets Aug 2013

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

Postby Candyys03 » Thu Mar 06, 2014 7:39 pm

Hello Everyone!
I hope that everyone s doing well. I am still tired from my trip to Los Angeles. I went with a group of cancer survivors to Oscar weekend. It was amazing! Something I would have never dreamed. More than just a bucket list. It went by so fast it feels like a dream. Most of us stayed in a mansion in Redondo Beach, CA. It was beautiful, right on the beach and huge. We gave out gifts to the celebrities at the gifting suite in the Beverly Hills Hotel and spread awareness about liver tumors and cancer with the non profit organization BeatLiverTumors.org. There were a few Oscar events we went to and I made many new and wonderful friends. The two celebrities I spoke to that were my favorite was Penny Marshall and Doris Raymond.
All of us had our makeup and hair done, gowns were made for each of us and jewelry was made for us also.
We weren't in the room where he awards are given out. We had our own red carpet and own room. It was Oscars-The Night of 100 Stars. A black tie event. Wonderful dinner and then an after party.
To see pictures and more check out my facebook.

Jeanette,
I have a palliative care team at my hospital. At first I did not want to go because the next step is hospice. It isn't until you can't leave your house or walk/get to the doctors is when you get palliative care or hospice care at home. I see my palliative care team every few months and so far all is well. They will give you any drug you want. I was told a medicine would increase my appetite and help me sleep but the pharmacist told me something totally different. It was a strong anti-depressant. Just don't have a bad day around them and/or let anyone at the hospital know or they get all weird on you. Vent to someone else or here. Just because you are having a bad day they think that you are depressed. Have your bad day and get over it before they find out. If it's about pain that's one thing but just a bad day that's another.

I am still here 6months later after I was told that there is nothing else for me. I start chemo again on the 26th.
I had 4 rounds of a lower dose Erbitux and irinotecan no fanny pack. After the 4th one the diaherra kicked in. I still have the Erbitux rash.
Happy to be here!
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
caringbridge.orgcandyllamas

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

Postby jeanette57 » Thu Mar 06, 2014 10:02 pm

Candy - wow what a trip - sounds so wonderful. This weekend was my cancer survivor retreat to a spa but I had to cancel because I forgot (really) about the wound on my foot.

I went for chemo Wednesday, was told -no- had to have blood. They tagged and bagged for today but the blood band fell off. OMG they were terrible - had to re-drawl - re=order blood and could get only one bag in me by 5 pm. ((&^%%%% -

then a semi friend staying with me tore my bed apart, down to the plastic bottom, aired it out and put in washer then left. I called they were coming right over to make my bed,, but hours later, pissed, they came made it and then asked if I were mad. I just put my head down and said yes, and then didn't talk. 8pm he showed up - then went to his bedroom. GRUMPY me.

I am not sure anymore about my cancer. I can't find why I can't keep my blood, between red and white I am always in trouble. My magnesium is always out - I dropped to my lowest weight since 1976 (pre wedding) and my tumor count is going down. I am having a problem breathing some times but pollen is hell.

however, count my blessings, have my insurance back, have my dog well, have enough money, enough food and enough friends and family. I have been blessed so who am I to feel grumpy (just means my guardian angel is going to have to tickle me again!) :)
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 » Fri Mar 07, 2014 4:12 pm

Thank you, Bev, for the prayers about the CT. I felt them along with all the others that people offered up for me. It went well. Yesterday, I tried to really hydrate as much as possible and it paid off with just one stick to find the one good vein in my left arm! They drew my blood for tests through my port. The tech said she got good pics and didn't notice anything new. Frankly, I've been so focused on stability or shrinkage, it hadn't occurred to me that I might have been growing new ones. Why? I don't know. At any rate, I hope that the radiologist doesn't find anything new and that I've gotten some shrinkage or am stable.

Candy, I've been blown away by the pics you and Allie have posted on FB regarding your trip. It looked and sounded awesome and how cool is it that you got to meet Penny Marshall and Doris Roberts??? I knew Allie was going and I kept scanning the audience to see her. No wonder I didn't find either of you! :mrgreen:

Jeanette, I'm praying they find some answers for you regarding your blood. I also hope you can get more reliable help.

I hope we all have a good weekend. Sometimes I'm amazed that I'm just chugging along in life and I have cancer in me. If you looked at me now, you'd never know. I'm back to being fat and sassy. However, if you saw me move, you'd know something was amiss. I remind myself of Tim Conway's old man on the Carol Burnett Show! :lol:

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 » Fri Mar 07, 2014 8:15 pm

Gwen - hope you find out asap and all is good. Go team Gwen!

I got the same old news - no wound will heal on chemo, but I changed from medihoney to silver treatments. I am happy that they still care and are watching it really well.

Had a great lunch, some of the best fish (but to spicy for me so they brought out the chicken). Blacken must mean lots of spices. Oh well. They served a carrot mashed casserole, and I was having such a great taste that the cook came out and smiled at me. He said I looked like I really enjoyed it. I should have asked for the recipe. Yum time a million. Then I split with mom a whipped lemon pie. The best part was I held it down for hours from 1 to 6 it stayed so I got some value. I had that saline from the blood transfusion and then everything came up...

so this week was in the infusion bay all wed, Thursday, and Friday. I am so looking forward to tomorrow! Fun and friends again! :)
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

Rubyslipperz1
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Location: Chicago Area

RE: Memory Boxes, cards for future, other ideas

Postby Rubyslipperz1 » Sun Mar 09, 2014 12:19 am

As a card carrying member of the Stage IV club, while I have great hope for many years, I am also trying to think about how to prepare the "Plan B" to ensure I leave behind journals, pics, notes, etc. for my kids. I just purchased memory boxes and I am purchasing things like future birthday cards, graduation cards, wedding cards, etc. I also started journals for each of my 3 kids to tell them their birth or adoption stories, share some of my favorite memories with them and my hopes and dreams for them. Have any of you done things like this? What other ideas have you considered preparing "just in case?" I guess I just feel like my kids would enjoy having these personal boxes left as a way to feel like I am always with them.....
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

janeandrea
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Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby janeandrea » Sun Mar 09, 2014 9:14 am

Ruby, if I had children, I would absolutely do that. I have been thinking of writing letters to each of my siblings, my mom, and my best friends for them to read after I am gone; a kind of personal goodbye, with my hopes and prayers for them. I've also thought about writing something to be read at my memorial service - is that weird?

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

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

Postby jeanette57 » Sun Mar 09, 2014 10:52 am

Great idea - I have been sending back pictures to all my friends from the past 20 years. I write about the picture and where and when. I tell them that my family will only toss them when I pass. I am having a problem with jewelry. So much nice stuff given over the last 50 yrs. :D I know that the (nieces ) girls 12 and 15 yrs old have no desire for it. My mom has tons from WWII bling brought over from Germany and know that the family would melt and sale the rings and stuff from 100 years of family because they do not value it.

My next thing worried and it is stupid is I am that person that can grow anything. My patio is alive with so many plants. I just gave back to neighbor Red Easter lily's with the pot around 75 pds. That from 3 originals. I have oak barrows full of lady slippers (desert plant). I have to find homes for all of them. none of my family wants the plants. Hum - the light bulb just went off. I wondered about my art work. I am going to find a charity that needs things for their walls. I am going to give to the museum some of them.

Again this club is great. I am telling my family if I can hold off till my birthday in June, I am happy, they do not want to hear it! No way, I have years left. Hum - can't break their fragile bubble but when I see myself, I am so skinny and pale that it is like another person there! :shock:
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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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Sun Mar 09, 2014 3:42 pm

jeanette57 wrote:...
Again this club is great. I am telling my family if I can hold off till my birthday in June, I am happy, they do not want to hear it! No way, I have years left. Hum - can't break their fragile bubble but when I see myself, I am so skinny and pale that it is like another person there! :shock:


I've been there, Jeanette and am praying that going back to that pale, skinny woman before I die isn't in the cards. It was so disconcerting!

I think I've been waiting until the chemo quits working to start the process of doling stuff out. Most of the family doesn't want to contemplate that there's no cure for me and I can understand that. I also know that's my path.

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

southernkiwi
Posts: 59
Joined: Thu Jan 14, 2010 7:55 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby southernkiwi » Sun Mar 09, 2014 3:58 pm

Hi Ruby,
I'm working on something for my kids, too. It's hard. What I want is somehow to tell enough familiar stories that they can still see themselves and me; so that they will remember my voice, my way of seeing the world. And so that they can extrapolate from there to what I would say to them in future situations. So, a variation on the past-performance-predicts-future-performance idea. At the moment I spend quite a lot of time talking about one thing and another with my kids, and there are various life-lesson themes that crop up over and over again, so it won't be hard to sprinkle those through more personal stories. That way, they'll remember what I have said and they will probably know what I would say, and I hope that will be reassuring even though they won't necessarily take any notice of any of it anyway!
I probably won't do specific cards for specific occasions because I'd find it hard to get beyond the generic and platitudinous, but I can see how that might work for other people.
What I'm really trying to do is to provide them with evidence that it was the little, every-day things that meant (mean) the most to me - love is not a big thing but a thousand little things. But memories of little things tend to be squeezed out by bigger things (like grief and loss), so it's the little things I want to reinforce.
All a bit of a ramble, but hopefully you can see what I'm aiming for.
Southernkiwi
Diagnosed Apr08; MutYH Associated Polyposis
Surgery (J-pouch, ileostomy) & anastomotic leak Jul08
Chemo (XELOX) Nov08-Apr09
Ileostomy closure May 2010
Liver met 2012
Inoperable lung mets April 2013
And liver and chest wall mets Aug 2013

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Sun Mar 09, 2014 4:03 pm

janeandrea wrote:Ruby, if I had children, I would absolutely do that. I have been thinking of writing letters to each of my siblings, my mom, and my best friends for them to read after I am gone; a kind of personal goodbye, with my hopes and prayers for them. I've also thought about writing something to be read at my memorial service - is that weird?

I love this idea of leaving cards for loved ones. Since I don't have kids, I hadn't thought about doing it for others, but I think they would be comforted and honored.

Jane, I am planning my own service (poems alternating with simple hymns), and was thinking of writing something myself, too, to put on the back of the (would you call it a program?). I also wondered if that would be weird. I think I'll have music played at the end of the service and tell people to dance their way out of the church -- you know, "dance like nobody's watching". I'd have to leave instructions to my best friends to get it started.

Has anyone written their obit yet?

Busymamaof3
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Busymamaof3 » Sun Mar 09, 2014 8:44 pm

I started with this thread when Kathryn posted it way back but didn't keep up. I think it was part hope my walk would be different. A year ago I had hipec, all visible cancer removed and a normal CEA....2nd hipec last week and in spite of 10 rounds of chemo since the last one more disease removed and small bowel seeding that isn't resectable. Sigh. Folfiri failed and I am Kras mutant so options are getting more and more limited. I plan to fight the good fight as long as possible but I am forced to address the fact it is highly doubtful I will see my children grow into adults or perhaps even into teenagers.

Ruby, before my first surgery I filled memory boxes with letters and cards. I also journaled. This year strangely feelin good while cancer was growing I got slack. But I am back in it. I also put things in there like when I found a cute card from my daughter to my son I put it in his box and wrote always remember how much you love each other. There is an etsy site where they make silver jewlery with your actual signature. I am going to do this for their boxes too. It is all heartbreaking but also gives me peace because if I were killed in a sudden accident I couldn't do any of this.
Dx Stage IV CRC 8/12, 40yrs old
3 kids under 10
10/5/12 1 met to liver
folfox w/avastin 4 rds
Folfox alone 4 rds
HIPEC/CRS 2/13/13
PT3N1cM1
Back on Folfox 3/12 - 4/23/13
It is back 8/23/13
FOLFORI 9/13-1/14 cea up
Folfox 1/13
Hipec w crs #2 2/27/14

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Mon Mar 10, 2014 1:55 am

The C-deff is kicking my butt. I had another accident so this week is not fun. So much GI blues makes you weak after so many months. Yuck!

At the cancer center they formed a group called the 7 levels of healing. I formed a good bond with these 12 people and one of them died. She had a YouTube tribute and it was so moving and upbeat that I decided that it was what I wanted. No service! Now I have to get family involved but they want that protective bubble that this will all go away, :x
However taking it day by day! wow, another full bag since I started typing, guess pizza for lunch was not the right thing to eat. hum paid the price tonight with no sleep. sweet dreams to all of you!
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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