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 » Mon Apr 14, 2014 7:08 pm

Hello group

I just got back from primary care doctor and sugar doctor. I had not see her (gp) for a long time. The sugar doctor is happy with my diabetic doc -control it-- but tells me to forget it and eat anything I want, as much as I can eat. I have lost nearly 100 pds Thank you GOD that I was fat. :D

Here is the place I hate to be! :twisted: no one to talk to here. My heart is struggling - did an EKG do blood work tomorrow and another EKG Thursday......yadaaa- heart was beating 139 resting - so guess now need to think about this issue which I didn't tell her it has been racing a lot lately (thought it was sugar). oh well.

I don't want to tell family as panic and sorrow are not what I want in my life at this time. I am using you my colon family to hold on too and let much go! Hugs to all. :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

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

Postby Regan » Mon Apr 14, 2014 9:17 pm

Oh Jeanette
I know I'm not a sufferer, just a caregiver but I soo want wish I could find the PERFECT word or phrase that helps you thru.

I am concerned about all your IV family....I watch for every word they (and especially you) write....bev, skypup, kiwi....so many

You need them to empathize as only they can.....

I love you. My funny friend. Wish I could take just one day of your suffering so you could rest....for all of you....and if course for my billy too

Theresa ( aka Regan)
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

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tchan8888
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Location: San Francisco Bay Area

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby tchan8888 » Tue Apr 15, 2014 12:43 am

J,

Big hug because you make me smile with your nonstop humor in this crazy situation. Stay focused on you!

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

Postby Guinevere » Tue Apr 15, 2014 10:38 pm

Jeanette,
I got in trouble with DH just yesterday because I didn't tell him that I had chest pains in the upper right part of my chest but no tingling, sweats, tingling or shortness of breath that would make me think I was having another heart attack. However, I did take my BP and it was HIGH. I took another Vastotec and went to bed. Yesterday morning, took my BP and it was lower than the night before but still high so I took a Vasotec and tried to put it out of my mind. Yesterday afternoon, though, I asked my mom to keep it in her prayers and she urged me to call the onc to see if maybe it was chemo related. I then had to confess to her that I hadn't told DH about it and that I had to do that first. Man! He didn't say anything other than "Go ahead and call the onc and see what she has to say" but his look said 'STUPID. :oops: Onc said this far out from the infusion she didn't believe it was chemo related and, since I already had heart problems when I was diagnosed, to call the cardiologist and see what they think. Left a message and waited all evening and most of the day to hear back from them and then left for Paris to see the Princess and get some groceries (in that order :wink: ). Saw on my caller ID they called about 5 minutes after I left the house. :roll: I may be looking for a new cardiologist...

I realized I just didn't want to deal with yet another health thing and so I didn't. Yeah, I know - STUPID. I just get so danged tired of it being one thing after another and it's been like that now for YEARS.

Hopefully, we'll both get out of the doghouse and bay at the blood moon! :mrgreen:

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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Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Apr 16, 2014 1:01 pm

good, I am going to put it off till thursdayy. do need to get a new pain as they are screaing - lower voice. I nave a bew wepon puke. you yell at me and I puke. great! :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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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Thu Apr 17, 2014 3:16 pm

That's a mighty weapon you've developed there, Jeanette!

Evidently, the coronary artery disease has progressed to start giving me angina. Great! So, I'm now temporarily on an extended release nitro that I take twice daily. DH will have to be very careful now handling me, I just might explode! :twisted: So far, no side effects other than really low BP this morning. I'll take it again this evening and call the cardiologist again if it starts being consistently low.

God bless to all on this thread ~
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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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Sun Apr 20, 2014 9:52 pm

Happy Easter!

Today was the Princess' first trip to our house. She was so cute! I'll try to post a pic the next time I'm at the computer. She was in awe of Grandpa's big TV and she had a good time being walked around the house. She even got her first taste of whipped cream on her pacifier. :wink:

This is in contrast to finding out my first cousin who was diagnosed with stage 4 kidney cancer about 4 months or so ago, that his organs were shutting down and then he passed away about 6:15 this evening. He had just finished 12 rounds of chemo which had really sapped him. He was about 6'2" and weighed 165. So it's been one of those odd days - joy and sorrow walking hand in hand.

My BP continued to be wacky. In fact, this morning, it said my BP was 151/126! I told DH that, when it went up like this on Stivarga, I usually had a headache. He also noted that, when my mom and his mom had these problems, they were also flushed. That wasn't happening with me either. Then, he took his BP and his reading was really high and he tends to have low blood pressure. I changed the batteries and took it again and it more like my normal readings - 111/73. So, I'll continue with the new nitro so I don't have another angina attack but I'm glad to know my BP isn't at stroke level!

God bless ~
Gwen

____


Here ya go - the Princess on Easter!

Image
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

Cb75
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Location: Ontario, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Cb75 » Mon Apr 21, 2014 5:29 pm

So cute....thanks for the smile :)
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

dianne052506
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Location: North Carolina

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby dianne052506 » Tue Apr 22, 2014 1:05 pm

Gwen,
There's no doubt this baby is your granddaughter -- she looks so much like you!
Love the pix!
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

vickitwo
Posts: 696
Joined: Thu Apr 26, 2012 9:56 am
Location: USA

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby vickitwo » Tue Apr 22, 2014 2:26 pm

Gwen,
Oh my gosh, the princess is adorable. What a blessing.
Vicki

DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54

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Candyys03
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Facebook Username: Candy Llamas
Location: Riverside,California
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Tue Apr 22, 2014 9:54 pm

Hello Friends!

Gwen.
She is so CUTE!

Jeanette,
I hope that you are feeling better.
I can't seem to get my weight to go up lately it's still trickling down.

I will have week 5 tomorrow of Erbitux and irinotecan and then I need a break.
This past week was tough.
I cant wait to eat some pizza and other yummy food.
Then I am going to get ready for my ACS Relay for Life Riverside event June 7th.

I am not on the computer much when I don't feel good so I hope that everyone feels better than I do.

Candy :mrgreen:
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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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Tue Apr 22, 2014 11:19 pm

Thank you all so much for the compliments of the Princess. As you might imagine, she's the light of our life! Got to see her today and she was such a good mood and we had a blast but it wore me out! Totally worth it. Chemo went well and, since the mystery pain hasn't been bothering me much, I'll have another round and then have the CT done. I like the idea of giving the chemo a chance to work so I'm fine with that.

Candy, I know how you feel and your mouth will probably heal fairly quickly so you enjoy pizza and other spicy stuff soon! At the moment, I'm feeling as alright as I ever feel but I know disconnect day is coming and it'll be 2 1/2 days of feeling like hammered crap. I'm going to try to have the best day I can tomorrow.

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Apr 23, 2014 5:19 pm

back to the land of the living! yahoo


Went to Primary Care doc, did a 911 and rushed me out to hospital. The nose infection spread to eye and looked bad. was in hospital - got 2 days of blood transfusions and begged to be let out for Easter. Today expected chemo and got long talk- will talk later when I digest information. :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

mameyann
Posts: 3
Joined: Fri Apr 11, 2014 8:06 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby mameyann » Wed Apr 23, 2014 9:05 pm

I am new here. My husband was diagnosed with stage IV colon on March 3rd. His liver is engulfed with tumors and he has some mets to his lungs. My first of probably many questions is his CEA count. His was 2700 initially, he will be tested again next week. I read on here people have a cea of 60 and say that is high. So what does 2700 mean?

Annekimfrench
Posts: 2
Joined: Wed Apr 23, 2014 9:56 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Annekimfrench » Wed Apr 23, 2014 10:14 pm

Great idea!

My stage 1 rectal cancer (dx 2010) metastasized to one of my Fallopian tubes and pelvic wall (2013). I completed my chemo 3 months ago and I am currently NED.

There is very little information on this type of recurrence. Has anyone had a similar experience?

Also, my neuropathy from the Oxaliplatin has gotten worse since treatment concluded, especially in my feet. Incredibly uncomfortable.

Any insight would be appreciated.

Anne


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