mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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

Postby janeandrea » Mon Mar 10, 2014 11:19 am

Skypup wrote: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?


No, I haven't written an obit...the thought actually hadn't occurred to me. I HAVE told my sisters and best friends to please make absolutely sure that no obituary contains anything like the phrase "she lost her long battle with cancer" or "after a long fight, she succumbed to cancer." That makes me a loser and cancer a winner. And I will never concede that, for it is not true. A simple "she died of advanced rectal cancer" or something like that is all that is needed as explanation.
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 » Mon Mar 10, 2014 2:08 pm

wow jane did I read your signature right. you got 7 years --- fantastic. I hope for much more for you. :D I am on year 2 and already tired.
I have been designing a YouTube memorial but need lots of work, my friends are going to scan pictures, and I have points I wanted to start. I am inspired by a fellow friend that did hers and was so lovely. I am not sure about the newspaper but may have one in there also. who knows.

Crazy all this stuff! I sure wish I could get a idea of how to tell if it is near or not. The one nurse who could tell how much time one had at cancer center is off with a slip disk. She could look the person in the eye and know in a day or two they would be gone. she would never tell them but I over heard her tell the charge nurse and cornered on it. I thought it a gift but she saw it as a curse. life is so interesting.
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

janeandrea
Posts: 314
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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 » Mon Mar 10, 2014 2:21 pm

Hi, Jeanette - yes, if I make it to this December, it will be 7 years. I have been very "lucky" in a lot of ways, in that I have beat many odds. On the other hand, while I am grateful for the extended time, a lot of it has been spent in pain and sickness. Now it looks like I may be on the downward slide and am having trouble accepting it or understanding it. My sister has been in town visiting from Alaska, and leaves tomorrow. Last night it occurred to me that this might be the last time I see her before I am either really sick or dead (if the 6-8 month thing holds). That hit me hard.

And yes, I am very tired of being ill. :)
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

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

Postby Bev G » Mon Mar 10, 2014 5:01 pm

((((Janeandrea)))) I wish I had something to say.

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

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tchan8888
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby tchan8888 » Mon Mar 10, 2014 8:01 pm

Hi Everyone,

Have been out of pocket for awhile. Maintenance chemo this week. Was in Tokyo last week for work and was able to visit the museum and eat some great food. My wife was unable to accompany me or this would have been perfect. Spoke about my 5FU tan to one of my colleagues and discovered that he had thyroid cancer five years ago and his wife had breast cancer two years ago, but all was caught early. Was an amazing bonding experience.

I understand the thoughts about funeral services. Haven't thought about the obit, but definitely plan to do my own eulogy. In my family, I am the designated host and eulogizer for the family and also the designated speaker for any distant relatives for "anyone like to add something" time. I'm not going to trust my wife or family with it. They won't know how to be funny.

For my obit, I agree. I don't want to have the verb "to lose" anywhere in my obit. Maybe something like, "Tom was called home after kicking cancer's ass for over ten years." I know that it is hard to feel that we are "winning" or "conquering" with this disease. However, am personally trying to focus on living and I believe that every day I "live," no matter how difficult, is conquering cancer because it teaches others that, while this is a bad break and I would not want anyone to have to go through this, that I am never defeated and never will be. And to "live" to me is just to take a moment and appreciate someone or something that brings a smile to me.

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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

Postby Bev G » Mon Mar 10, 2014 8:07 pm

tchan8888 wrote:Hi Everyone,

Have been out of pocket for awhile. Maintenance chemo this week. Was in Tokyo last week for work and was able to visit the museum and eat some great food. My wife was unable to accompany me or this would have been perfect. Spoke about my 5FU tan to one of my colleagues and discovered that he had thyroid cancer five years ago and his wife had breast cancer two years ago, but all was caught early. Was an amazing bonding experience.

I understand the thoughts about funeral services. Haven't thought about the obit, but definitely plan to do my own eulogy. In my family, I am the designated host and eulogizer for the family and also the designated speaker for any distant relatives for "anyone like to add something" time. I'm not going to trust my wife or family with it. They won't know how to be funny.

For my obit, I agree. I don't want to have the verb "to lose" anywhere in my obit. Maybe something like, "Tom was called home after kicking cancer's ass for over ten years." I know that it is hard to feel that we are "winning" or "conquering" with this disease. However, am personally trying to focus on living and I believe that every day I "live," no matter how difficult, is conquering cancer because it teaches others that, while this is a bad break and I would not want anyone to have to go through this, that I am never defeated and never will be. And to "live" to me is just to take a moment and appreciate someone or something that brings a smile to me.



Blessings,

Tom


Tom, I sure hope I've told you before now that I simply love everything you write--do so hope I've let you know a long time ago! ;-)

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

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

Postby jeanette57 » Mon Mar 10, 2014 10:00 pm

go team Tom- loved it!
I feel like a wimp, I am already tired of being sick and so tired. hum! will have to work on it. :D
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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tchan8888
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby tchan8888 » Tue Mar 11, 2014 5:04 am

Thanks Bev.

Jeanette, you are the one who inspired me to look for those moments everyday. I enjoy hearing of your food follies and how you try to make fun of your own experience. This has given me strength to find something in the day. Otherwise, what else can we do?

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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

Postby jeanette57 » Tue Mar 11, 2014 12:23 pm

Must be a tear filled week, Thanks for the kind words. :D

I got asked if I wanted to sale my trailer to our camping group. wow, to know I will never camp in my baby again. I think I will let my family take care of it after I am gone. It is a vintage Trillium. I guess the offer from group started me dreaming of the 10 years of summer camping. It is a wonderful dream and of the city I loved more than home (Lompoc CA).

Today trying to get up and dressed for lawyer for mom's trust. I still have to figure out everything for her and try to get the rest of her life settled. It is sad that I took such good care of her for 18 years that she can't think on her own. At 90 she is sharp but doesn't write English very well and acts dumb and mute with lawyers. Oh well! I still can talk! :)

hope this day is great - this week is great - this month of colon awareness is busy being tossed to all our family and friends. Have a great one. :)
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 11, 2014 5:15 pm

With all you've been through, Jeanette, it's certainly understandable why you'd be sick and tired of being sick and tired!!! Like Tom said, the humor with which you do it, really is an inspiration.

Mixed bag on the CT, the older and largest tumor in the liver grew 6 mm but the other tumor didn't grow at all. My onc said she's unsure if the disease is progressing. The good news is that I'm taking off two rounds of chemo and will start again on the 8th. However, she wants to have a CT done after 3 rounds to better see if I do have progression. Also, there were some hinky stuff in my left lung but she and I think it's congestion from allergies. The radiologist was concerned enough that he recommended a follow up in 2-3 months to make sure it's not pneumonia. :shock: She and I agree that, if it is, we'll know before that time! :wink:

Got to spend about 3 hours with the Princess. She's growing like a weed and is now holding her head up for short periods. She'll be 7 weeks tomorrow!

Beautiful spring weather here today. We have another cold front coming later in the week but it's gorgeous today. I hope it's lovely where you are!

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 » Tue Mar 11, 2014 7:40 pm

My hands aren't as good at crafting as they used to be. Maybe Ill just give my kids boxes and wrap them like at Christmas.

I am so tired and exhausted just from doing one little thing. I am taking vitamins, smoothies, eating,( eating good, healthier food) walking,... I gain 3 lbs and then lose 3 lbs. Hoping to eat some pizza though this week. Yummy!

It took me days to recuperate from my Oscar weekend but it was worth it-a bucket list dream. I met Penny Marshall and Doris Richards(the mom on Everybody Loves Raymond),many more celebrities and had tons of fun. :D All donated from various people through BeatLiverTumors.org. If you had a choice and someone said lets do this or go there I recommend saying YES because you could get hit by a car and die tomorrow.

My chemo break is flying by.
The temporary vocal cord/voice fix is gone and I don't see that doctor until the 21st.I tried to get in to him earlier but no way he's booked up. Hopefully he will put in a permanent fix within the next month.

I wish that calgon would take me away! lol :) Does anyone have a house in Baja California?

My granddaughters 5th birthday is on the 22nd.Do you know that you cant find Frozen anything out there? Especially for Elsa the blonde haired girl. My daughter is making most of the party decorations. I hope that Disney starts making more merchandise. The trucks come in and the stores sell out right away. We've been to many stores. Its crazy!

I still have to work on tax stuff and other paperwork. Which I am procrastinating. I have to do it because my eyes get blurry sometimes when I'm on chemo.
The Erbitux is still driving me crazy with the rash and dry skin. My leg is doing great!

Does anyone know of or have heard of anything about Cleaning for a Reason?
The only thing I know is what Kathryn had told me. I'm still on the waiting list and if I don't hear from them within a year which is in September I have to apply again.

Bye for now
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 » Tue Mar 11, 2014 9:58 pm

I am getting things ready for round 2 of this Vectitux and not looking forward. I am going to ask for a reduction in the amount. my fingers are going numb and my shoulder blades are going crazy. reduction and a jar of curry mix for him.

I went with mom to the lawyer and she didn't like all the fees and such. Oh well :shock: I explained she needs to be protected and I need someone with tough skin to do it. My brother is good at causing trouble. Sad as I know by himself he would be a great guy and help mom but with 11 people sucking off him (his choice) it will not happen./ Oh well.

Humor for today. The wind! I so love it, feel a thousand angel feathers hugging me! I feel the prayers and light of fresh spring buds come up, and I remember how wonderful spring can be! Yes life is good today. Until I decided to try a fried apple pie - kicked my tummy one side to the next. Oh boy, I love forgetting I can't eat heavy fried foods :o oh well I have to smile through it.

Hope this week is a joy to all. Just learned there is a town in Texas which I think is Freadburg that speaks German. May do a bucket list there! Would be fun for mom. :D
!
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

dianne052506
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby dianne052506 » Tue Mar 11, 2014 10:30 pm

Just a quick note to say you all are always on my mind. I have been out of touch lately with more issues than I have energy right now to explain, but the docs seem to be encouraging (for the short term; nobody mentions long term).
So many things I want to comment on, but as I said energy level is low tonight.
I love that people have bucket lists. I do not. I have one child, and my life has been always been wrapped up in hers. These last couple of months of illness have given me a glimpse of how she and her dad will do without me. They are getting closer every day, which is good, but I know she still expects me to be there for support.
As far as funerals, I have not thought about my obit, or a eulogy, but I have given serious thought to the music I want. At least one traditional, high church piece, either "Love Divine, All Love Excelling" or "Love Lifted Me;" one old-time gospel song, either "Will the Circle Be Unbroken" or "In the Sweet, By and By;" and if the church will allow it, two or three rather off-beat pieces, "Think of Me Everyday" from the Christian cartoons Veggietales, which compares mother's love with God's love, "The Rainbow Connection" from The Muppet Movie (my husband and I saw the movie decades ago on our honeymoon, and the song became a lullaby when my girl was a baby), and/or "For Good" from the musical, Wicked, for all the friends whose lives have touched mine.
Now I have officially used my energy for the evening.
Love and prayers for peaceful, pain-free sleep for all,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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

Postby jeanette57 » Wed Mar 12, 2014 10:28 am

Great thought. I have one song from YouTube which will have to find someone to pull it. Then I have always loved Dance- I sing this little light of mine a lot, so maybe that is a good one.

The pain is starting to creep in, guess I was lucky for 2 years no pain, but after the blood on Friday my shoulder blades are acting like one big headache. Hum didn't see that coming. Got to get dressed and go for another chemo, not feeling it today but have to do it for this week. :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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Candyys03
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Wed Mar 12, 2014 3:08 pm

Love this song!
Did anyone see Despicable Me 2 ?
Pharrell Williams - Happy (Official Music Video)
http://www.youtube.com/watch?v=y6Sxv-sUYtM&sns=fb

Jeanette,
This Little Light of Mine
http://www.youtube.com/watch?v=QCN893hzueQ

I don't know what Dance version you like.

Jane, I'm at 7.5 years with this cancer. You can do it! There is HOPE! Keep up the fight.

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


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