mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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

Postby skypup » Mon Sep 08, 2014 5:34 pm

Hi Gwen. I'll sure be thinking of you as you go to that doctor visit, and looking forward to hearing what she/he has to say, especially about the sleep weirdnesses!

I am doing... okay. This chemo, folfiri plus erbitux, has kicked my butt hard. Instead of being out of commission for 4-6 days, it's been 8-10. Sucks. However, the last one wasn't as bad, so I'm hoping I am somehow adjusting. Don't know if that really happens. My CEA dropped like a rock the first month I was on it, from 127 to 23, so I hope it is getting me stabilized. CEA has been an excellent marker for me. I scan in two weeks, so I'll know soon. My hope is that if things do shrink and stabilize, I can go on an easier maintenance version of the chemo.

Thanks for asking about my Sky. She is getting older, almost thirteen now, and her eyesight is not good due to retinal atrophy (common in cattle dogs.) Other than that, she is in great shape and is my constant companion.

A funny stage IV thing: I bought a robot vacuum because it is sometimes too tiring to push the big vacuum. Used it this morning for the first time and it was a scream. Imagine a human, a dog, and a cat following this little thing around intrigued by how it was finding its way through the house. It worked really well, btw. Two thumbs up!

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

Postby Elizmed » Mon Sep 08, 2014 6:28 pm

Hi Gwen,
Keep us informed of your md visit.
This is my chemo off week, enjoying it as much as I can. Saturday saw my two granddaughters, Julianna (7 yo) & Sophia (3 yo) at
their dance studio. Then we had long lunch at Chic-fil-a. Sad how the founder died recently of old age. There's story (haven't verified)
that he had colon cancer IV at the age of 38. Doctors performed surgery but didn't give much hope, he died 55 years later.

Made myself go to outdoor craft festival in Stone Mountain, GA. It was great! Didn't spend much money but love to see original works of art & jewelry.

Skypup, I hope you feel better soon. Hate to hear chemo has you down.

Take care,
Elizabeth
57 F DX 8/13 Colon/PancreaticIV
9/13- Surgery remove spleen,partial pancreas tail,partial left kidney
10/13- Gemzar+Abraxane
11/13- Avastin+FOLFOX 6
3/14- Hysterectomy
4/14- Avastin Xeloda
8/14- Folfiri-Vectibix
10/14-Gemzar Abanxane

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

Postby juliej » Mon Sep 08, 2014 6:33 pm

Gwen, I'm curious too what your onc will say about your midnight sleepcooking! It sounds so bizarre -- and I can see why it would be unsettling.

Sophy, there's a sweet spot for taking Xeloda and it seems to vary from person to person. For me it was exactly 20 minutes after a regular meal, 15 minutes after a light meal. Any sooner or any later and I'd get nausea for hours afterwards. You might experiment a little and find the best time for your body.

Skypup, your CEA drop sounds like a very good sign! I know someone on a similar regimen (Xeloda, Irinotican, and Erbitux) and he said it got easier to handle with every cycle. He said many people adjust/acclimate to that mix and although he's still fatigued at times it's nothing like it was in the beginning. Hope that's true for you too -- and hope your scan shows major shrinkage. I'll be swinging chickens for you.

I can just picture the three of you following the robot vacuum! I've always been intrigued by them so you'll have to let us know how it works out. I wish there was one that did stairs. And a little one that cleaned all the crumbs off the kitchen counter. I'm a messy toast maker.

xo,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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

Postby Bev G » Mon Sep 08, 2014 8:43 pm

Thinking of all of you guys tonight. Skypuppy, love that you got a robotic vac. I am very seriously thinking about it.

Here's one for you!

https://www.youtube.com/watch?v=Of2HU3LGdbo

Gwen, glad you'll be speaking with your doc soon. I can't wait to hear what she/he has to say about the sleep cooking. I am really scared for you about that. I'm betting drug interaction. So sorry you are feeling so crappy, and praying you'll catch a break feeling wise.

Who has heard from our Tom? Anyone?

I hope everyone else is hanging in there. I pray for you all, and you are always on my mind.

Love,

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

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

Postby kpjpmom » Mon Sep 08, 2014 11:27 pm

Gwen,
Have been thinking of you for several days. Glad to see your post. I could not sleep tonight so I am "browsing" in my favorite spot, checking on everyone! I hope you get some answers to your questions and help for your pain. I have a scan on the 23rd, thus my inability to sleep. Anxiety always begins to build as I get ready for that! How is the princess? I always enjoy your princess updates! I got to spend time with my two grandsons this weekend. I fell asleep on the couch with the one month old on Sunday. I was so sleepy and holding him made me so warm and comfortable.

I hope that they can find something to make you more comfortable and have less nausea. Maybe the MMJ RX will help if you get it. Well, I better go to bed if I am to be any kind of a teacher tomorrow. I hate what cancer does to us. Lurking around in our bodies and minds. Take care and keep us posted on what the doctor says about you.
Blessings sweet queen!
KPJPMOM
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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

Postby jacekica » Tue Sep 09, 2014 12:49 am

Gwen, I hope you were at doc and know more about midnight activities.
Skypup, Sky is an old lady, I am still sad and cry about my lab mix, she was part of me, I miss her enormously.
I am happy for your CEA drop and better dealing with chemos.
I was at ultrasound, I have my mets on pancreas, and one large in pelvical area on big vesel, it is a little smaller than before, anf few other mets are gone. I take cimetidine, ginger with honey and hemp oil.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

Asterix
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Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Tue Sep 09, 2014 5:32 am

I'm sorry I haven't had a chance to keep up with this thread. Back in the ER Sat night for some IV morphine for my back pain, but managed to get home by 9 pm and was able to have Father's Day with my extended family. PET scan on Monday to rule out anything else causing pain, results today showed nothing new (dosed up on meds so I didn't get a pain attack during scan, plan worked :) ). T9 and T10 met, maybe something a bit lower (haven't seen report), no comparison done with pre-Mekinist CT and MRI so no idea on effectiveness other than definitely not wild progression. A spot on one of my low ribs corresponding to one of my pain points, and my left scapula which also gets intermittent pain. My onc got me straight into rad onc in same building, he said lets radiate T9-L3 I think, 8 times, rib once and scapula 5 times. Got tattooed today, start radiation tomorrow (Wed). So will get Wed, Thur, Fri, Mon-Fri next week. Which is good since I am meant be going to tropical North Qld to spend time with wife's brothers and fishing the Great Barrier Reef. Kids get to see the cousins. And hopefully pain free by then.

Good news is we though my abdominal lymph nodes were widespread but appears to be less on this scan, but it supposedly is a better PET scanner. Who knows, will worry about that latter. Apologies for any typos as I've got a bit of pain relief on boards. Best wishes to everyone.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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

Postby jacekica » Tue Sep 09, 2014 8:04 am

Asterix I m sorry for your back pain, hope meds will keep it low and bearable.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Frenchie's Wife
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Frenchie's Wife » Thu Sep 11, 2014 2:53 pm

I saw my oncologist today. I was expecting bad news and he didn't disappoint. Now I had a met come back in my liver !! It seems that every time I see him, he finds a new tumor. My lung mets keep growing and making babies. My nose tumor has increased in size but still does not bother me. This has only increased my resolve to stay off chemo and enjoy life to the fullest. I have so much energy and stamina at the moment, I'd like to go back to work or do something physically demanding that would burn off some of this energy. I am the type of person that can't sit around doing nothing all day. I have a need to feel productive. I have decided not to go back and see him, He's always full of doom and gloom anyway, I still have no symptoms or pain of any kind and he makes it sound like I am on the verge of drawing my last breaths. Apparently, I am an anomaly according to him. It will be interesting to see how this plays out.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

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

Postby skypup » Thu Sep 11, 2014 6:54 pm

Bev G wrote:Thinking of all of you guys tonight. Skypuppy, love that you got a robotic vac. I am very seriously thinking about it.

Here's one for you!

https://www.youtube.com/watch?v=Of2HU3LGdbo

Gwen, glad you'll be speaking with your doc soon. I can't wait to hear what she/he has to say about the sleep cooking. I am really scared for you about that. I'm betting drug interaction. So sorry you are feeling so crappy, and praying you'll catch a break feeling wise.

Who has heard from our Tom? Anyone?

I hope everyone else is hanging in there. I pray for you all, and you are always on my mind.

Love,

Bev


Bev, now I see the video, crazy! Also, I emailed Tom just the other day. He said he is just taking a break for now, so much sadness. Plus he has been traveling.

We haven't heard more about Alan, unfortunately.

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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Fri Sep 12, 2014 3:25 am

Hey guys! Sorry for the lag in letting y'all know what happened at the onc's office. First of all, she didn't even bat an eye at the incident but it seemed to firmed up in her mind where she was wanting to go with me. First of all, I had lost right at 10 pounds since my August 12th visit. She was concerned I was throwing even on Zofran and, despite doubling up on the Lomotil, my stool is the consistency of vomit. Even with decent labs, excluding some of the liver markers (LDH was 1600+, alkaline phosphatase was even higher than usual), she thinks I'm ready for hospice care - more for palliative care, especially with the nausea and vomiting as well as getting help with my stoma if that need should arise again. Frankly, I was relieved but very apprehensive because of the cost. She also prescribed Haldol and Ativan to help with the stomach issues and the Haldol can also help with any anxieties I might be dealing with. Therein lies the reason for the lag in letting you guys know how it went -I've been sleeping a lot! And, actually have felt rested sometimes when I wake up! Woohoo! She was quick to assure that she doesn't think I'm at the end stage but she feels I need some care throughout the weeks between our visits. Gary and I were in total agreement even as our brains were screaming, "How're we gonna pay for this??!"

She sent in my favorite Onc RN who knows the score as far as our financial situation. She named a company that she really likes and one of those reasons is because they take uninsured patients. She made a few calls and said to be looking for a call from that afternoon. We weren't home long when she called and said she should be by in about an hour. Lovely and caring woman just like every nurse I've dealt with on this journey! She explained what she'd be taking care of - ordering my meds; taking my vitals; answering any questions she could and consulting my onc for things specific to me, ordering my ostomy supplies as needed and so on. I had had to go to the bathroom and, while I was out, Gary asked about the cost. She told him there would be no cost to us at all, for anything. I knew he looked a little strange when I walked back into the room but put it down over anxiety over me as well as how much this was going to be. After I made sure she had plenty of experience with ostomies, I, then asked about the cost. I think I came as close to fainting as I ever had when she said "There is no cost to you. Company policy. Can you believe it??! ME! The one who never qualifies for anything except her chemo is paid by the manufacturer! Even if I have to get a hospital bed or oxygen, they'll pay for it! They're even paying for my ostomy supplies!!


I knew God had a plan. He hasn't let us down yet but I was anxious to see how He'd come through on this one! As usual, it above and beyond anything I could have come up with. I'm telling this thread and a thread on the ostomy board and limiting who I tell in "real life", mainly to avoid the "You poor baby" and such as that. People hear or read the word hospice and start freaking out. One I'd the great things about this forum is the education I've gotten in the different phases this disease can take. If and when it becomes more serious, I'll probably let everyone who's interested know what's going on.

Frenchie, what a pain in the brain to learn you have more mets and that they're so happy, they're making babies. I'm not sure I understand all I've read about treatment - I think it's radiation if they can and Cyber or Gamma knife, whatever that is. It sounds like you're at what Ashlee used to cal "whack-a-mole" stage in this disease. Since you're not too hep on more treatments and you're not in pain, I'd say, Go for it!" Whatever "it" is for you. :wink:

Asteroid, I definitely hope the treatments bring you some relief from the bone pain and that you're able to go on your fishing trip.

Sky, I sure hope your baby's doing alright today. I always smile when I see your avatars.

Kpjpmom, thank you so much for the words of encouragement. I can always use them!

I thinking finally ready to go to bed here at 3:25 in the morning. Please take of yourselves!

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

Sharona
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Facebook Username: Sharon Rauch

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Sharona » Fri Sep 12, 2014 5:18 am

Gwen,
Have had you in my thoughts and prayers and am happy to hear that all went well. So many have the mistaken idea that when hospice is called, the end is near. I'm so glad that they are able to help you at no cost. What a relief! That alone should reduce the need for anxiety meds.
Relax, know that you are in good hands.
Hugs,
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch

jacekica
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Facebook Username: jasminka marout

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jacekica » Fri Sep 12, 2014 6:29 am

Gwen - I am happy that you have all arrangments so nicely put on service for you, i know how important it is not just for health but also for soul and psychologicaly.

I get my skeleton scintigraphy result - my pains are from mets in hips and pelvical bones, but the worst is right hip and I must be careful not to broke it, it can breake spontaneously...so I will go to radiation to lower my pains and be careful not to break a hip ... I am affraid and anxious, i don't know how difficult it can be because my other organs are healthy, my heart is like a horse (meaning it is strong and healthy) and no one knows how much pain i had to suffer, onc told me that only thing I can expect is pain.....
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

kpjpmom
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby kpjpmom » Fri Sep 12, 2014 11:28 pm

Gwen,
So glad to see your post! I have been looking to see if you had been on and noticed that you had not posted. I am so thankful that God has made a way for you to get the help needed. What a relief for you and your husband. I hope the medication will continue to help you get rest and be pain free. Thank you for your posts and the information that you share with all of us on this thread...invaluable. You are loved and missed when we do not "see" you. It sounds like you have a very supportive oncologist. So glad a plan is taking shape for you. Take care!
KPJPMOM
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

nicoletta
Posts: 30
Joined: Wed May 21, 2014 8:46 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby nicoletta » Mon Sep 15, 2014 8:55 am

Hi Gwen,
I've followed all your history: the diseases one but, overall, the Princess one.
I'm so happy that you can have your meds free so you can alleviate your thought to concentrate yourself in this horrible fight, also to see your beautiful Princess to become a Queen.
A very big kiss and hugs
Nicoletta


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