mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Cb75 » Mon Dec 08, 2014 5:28 pm

I have noticed that this board feels a bit foreign to me lately as well. It get harder as time goes on, more and more loss and more questions about my own future. My heart has been broken by loss, it makes it hard to reach out and reconnect again. I try my best to stay positive and hopeful, but it is hard. The holidays bring out so much emotion. No on knows how the next year will unfold. But, there is always the question of will I be here for the next one. No one can truly understand what it is like to live with this reality, except for you guys. I hope we keep this going.

Carmen<3
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...

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Tue Dec 09, 2014 6:23 am

Some more good news for me. Although white cells were down and needed two days of the white cell shots after some neutropenia, they bounced back nicely and I had chemo today. Doc says my liver function continues to improve on the blood tests. And they are kicking me out of hospital tomorrow since I have my hospital bed sorted at home. When I entered hospital 6 weeks ago they said I'd never get off the pain pump, let alone go home again. I need the bed to sleep in reclined positions since I can't sleep flat. Managed to get a good deal on a demo hospital bed like I have in hospital that inflates as you move in it to maintain comfort. So no more sleeping in a recliner chair at home with my feet hanging off the end. My pain can be managed with a fentanyl patch and oral morphine slow release capsule, with oral liquid morphine for break through pain if needed (once a day if at all). Hopefully the pain improvement is linked to a regression in whatever cancer thing was causing it in the first place.

Carmen, I get what you mean about the holidays. I little while ago, I thought I wouldn't make this Christmas, but at least I think I should make this one. I'll worry about the next one later :)
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

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Bev G
Posts: 5856
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Tue Dec 09, 2014 10:10 am

Hi Paul,

That's such good news from you today, and I'm so glad to hear it. A comfortable bed in your own home! It's about time. It sounds like you have become expert at managing your pain, and that is great to hear, too. You are an amazing guy and a true inspiration.

Five years ago today I was diagnosed with stage IV CRC. It astonishes me that I'm still around. I would be so much happier about it if all of our friends were as well.

Peace,

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

nick49
Posts: 89
Joined: Sat Jul 19, 2014 9:18 am
Location: UK

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby nick49 » Tue Dec 09, 2014 11:26 am

Hi,
I know how you feel...it's like I'm living in constant limbo!
I lived just outside Toronto for many years....good times.

Take care
Nick
Diagnosed Stage IV Colon Cancer Aug 2013
Metastatic adenocarcinoma of ascending colon.
Distant Lymph Nodes
49. Male.
Chemo - August 2013 for 10 cycles.
Kras Mutation.
July 2014 - Started Zaltrap/Folfiri - 8 cycles completed.
http://www.nickjparry.co.uk

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Sophy
Posts: 252
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Sophy » Wed Dec 10, 2014 1:50 am

Congratulations, Bev, on reaching your 5 year mark. It sounds as though things haven't been easy at all during those 5 years but now you are out the other side. Maybe out into the sunshine - but as it is US winter the weather may not be playing along with your good news.

Asterix, I am glad you are able to sleep comfortably at home. I find that the effect of my illness on my children is the hardest thing to cope with. I would love to be able to die at home when my time comes as we have a beautiful view over a sea inlet to the green rolling hills beyond (with New Zealand sheep on, naturally) and I can just gaze at the view for hours feeling at peace. However, I think that it would be hard for children to have 'the room Mummy died in' in the house. Does anyone else feel like this? I hope I am not being morbid but I like to plan for all eventualities.

I find that other people like to assume I am going to survive the cancer even though the odds are definitely not in my favour. I think that maybe they don't like to be faced with their own mortality. I am the first of my friends to get cancer so they aren't used dealing with it in someone their own age and not a grandparent.

Anyway, with a reduction in my chemo dose to half what I started on I am feeling much more alive. I know that things can change very quickly with cancer so I am trying to enjoy all the time I have and do things with my family. We put up the Christmas tree yesterday and have all agreed that if finances and my health permit we will go to Europe for a White Christmas next year. I like planning for happy things too even though they might not happen.

It is very difficult coming here to the CC with so many lovely people gone. Like CB says, it is hard to have the energy to pick up again and reach out to new people. Sometimes I feel like it is a war and we get the notifications of people missing in action or died of wounds etc. So like those people in wartime were afraid to open their newspapers to look at the casualty lists inside I find myself hoping that there will be no bad news when I log on.

Hoping that everyone is having a pain free and happy December

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 2020 CT shows nodule, bronchoscopy shows scar tissue, still NED
Dec 2020 stopping Chemo

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pollo65
Posts: 1564
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Facebook Username: pollo2
Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Wed Dec 10, 2014 4:46 pm

On my way to see my onc concerning my last scan. In one year off chemo the last scan finally showed one of my nodes had decreased in size but the other has grown by a centimeter. So I am off to do the accused what next talk. I know skypup,myself and others have gone through this before but it always seems like dammed if I do and dammed if I don't. I suspect that I will cave in and go back on chemo but I am beginning to feel like I am just plain wearing out... Don't me to be I downer I am very appreciative of my (almost) six years.
Just whining.
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

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Thu Dec 18, 2014 4:40 am

Well, I've had a bit of a bad few days. On Monday I developed a minor fever and after days of bad fatigue rang the palliative care doc I was under at the hospital and they readmitted me. Turns out the last chemo (4 weeks of irinotecan and 5FU) made me neutropenic, aneamic and the diarrhea made me low in potassium. IV antibiotics in case I had an infection (nothing showed up, fever has gone now) and potassium and that white cell shot was give, 3 shots of the white cell stuff and last night I developed terrible bone and thigh pain and had a bad night and got all teary and basically lost it. The nurse here though is great and got me through it. I felt very cold, even having a shower was impossible as getting out of the shower I felt freezing. I had a shower this morning and got through it ok,and I'm feeling a lot better now. I'm still neutropenic just, but potassium and calcium have improved. CEA and liver function are also improving, so at least all this pain is for something positive. Blood tests tomorrow and if the doc is happy with them I get to go home. Not sure what the plan is for future chemo, but considering I coped well until the last week, and it is having a good effect on the cancer I will continue for now.

Sorry to whine but it helps to rant sometimes. Hope everyone else is doing ok.

Paul
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

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Thu Dec 18, 2014 9:36 am

Hi Paul,

I'm really sorry to hear about your continued trials. I'm glad you're feeling a bit better now. Hoping they spring you today. It's wonderful news that there is stability in the cancer. Feel better today, I hope!

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

Sharona
Posts: 187
Joined: Sun May 19, 2013 3:06 am
Facebook Username: Sharon Rauch

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Sharona » Thu Dec 18, 2014 11:50 am

Paul,
Sorry to hear about the problems you are having. So glad you feel free "whine away". That is why we are here-- to listen and to support you.
Hope you get to feeling better soon.
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

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O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

Holiday greetings from Jacekica

Postby O Stoma Mia » Sun Dec 21, 2014 3:46 am

Image
Jacekica

Hello All -

I am posting here on behalf of Jacekica, who no longer has any Internet access but would nonetheless like to wish all her friends here "Happy Holidays" and a blessed New Year.

Image

If you would like to light a candle on behalf of anyone here during this holiday season, here is a link for that:

Light a Candle at Christmas

.

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Cb75 » Sun Dec 21, 2014 11:11 am

It's getting harder. The holidays bring so much emotion under the best of circumstances. I'm struggling a bit, it seems like bad news surrounds. What do you do to make the best of things? I'm trying to make the best of the holidays, but its hard. My daughter is three. She's really into it this year, its hard not to wonder about what comes next.

Happy Holidays to everyone here. I hope everyone finds some moments of peace this holiday season. <3

cb
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...

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Asterix » Tue Jan 13, 2015 6:06 am

This thread as gone a bit quiet again so I thought I would post and bring it back to the front page. I hope the holidays were ok for everyone. I must admit I enjoyed them more than I thought I would, it was good to be home rather than hospital. I have still been suffering bad fatigue and we are unsure if it's the irinotecan or the Kapanol (oral morphine) than I'm on. I'm not getting any breakthrough pain so we are going with the Kapanol theory and reducing it to see if my pain remains away and the fatigue improves. I'm also have a scan tomorrow to see what's happening. I currently know of lung, liver, bone and lymph node mets and my onc would be happy with stability. GIven I was almost at death's door back in Oct, and didn't restart treatment until November, stability would be great. The two docs I see (onc and palliative care) are very happy with my progress even though I don't feel great most of the time. I've only been on irinotecan for almost 2 cycles of 4 on 2 off weekly so not a long time to gauge effectiveness, so any good news is good we feel.

Thinking of the rest of you guys.

Paul
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

pog451
Posts: 799
Joined: Thu Oct 13, 2011 6:11 am
Facebook Username: andrew.morgan

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pog451 » Tue Jan 13, 2015 12:34 pm

So this is me, on my way out.

I'll post it here rather than the main board.

I won't re-run the details, but before Xmas I had significant rectal bleeding. Tests showed that my second dose of radiation had nuked everything and left behind a massive inflammation, within which tumor cells could still be detected. In other news, the mass on my liver got significantly less, but the stable-for-two-years things on my lungs grew slightly.

The plan was to set a colonostomy or ileostomy to stop stool running through thei inflammation and give it a chance to heal. As a result of renewed bleeding on Friday, I took myself off to the hospital and they pulled the op forward to yesterday.

Now I've been hit by a CRC classic - They opened me up and almost couldn't find enough small bowel to build an ileostomy, let alone a colostomy, because everything was "just one big lump" due to peritoneal metatastasis. F#%k.

I'm recovering from the op ok, the ileo seems to be working well, tomorrow is tumor board so I'll guess I'll know then if any more treatment makes any sense. My gut feeling is no - I'd rather try and spend a few good weeks with the family than a couple of months on the couch with chemo side effects. It doesn't look like I'm going to make 50 though (in June).

I've always known this disease can go nasty quickly, but it's another thing when it happens to you. My poor family, My 5-year old obviously knows I'm sick, but not how bad. Goodness only knows how and what we are going to tell her.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Maia » Tue Jan 13, 2015 1:44 pm

Awful, pog. Very saddened to hear this.

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Tue Jan 13, 2015 6:25 pm

Dear pog, I am so sorry to read your news. What is it about peritoneal mets that let them go unobserved by all those scans we keep getting? (They "think" I may have some, but who knows?) And from what I have read here, the systemic chemo doesn't do much for them. Anyway, the important thing now is that you get to hold those you love as much as possible, and that you have as much comfort as you can get. To that end, is there something that would help from the forum? Cards from around the world?

Thank you, sir, for letting us know. Now please beat the odds a little more. And check back in?


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