mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Frenchie's Wife » Sun Feb 08, 2015 2:26 am

Hi Skypup,

After I stopped taking the drug cocktails they were prescribing to boost my energy level, I seem to have gotten my second wind all on my own. I have nowhere near the energy I had this past summer but I am able to get out and about a lot more these days.
I went on a 5 day ice fishing trip after Christmas and spent the following week recuperating from the effort. I thought that the cancer had finally caught up with me last week when I suddenly experienced excruciating pain in my side. It turned out to be kidney stones. Very painful but not deadly.
The oncologists don't agree , but I strongly feel that if I can make it through these winter months, I still have another summer in me.
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

Rubyred
Posts: 1
Joined: Sat Feb 14, 2015 12:47 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Rubyred » Sat Feb 14, 2015 1:27 am

Everyone has so much information listed here. My sister has stage 4 metas tic colon cancer. She has been fighting for over 3 1/2 years. Recently a met was found on her spine and innumerable met on her lungs. She started irinotecan with vectabix today. She sounds a lot stronger today. Does anyone have experience with this combination of treatment?

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 » Sat Feb 14, 2015 2:08 pm

Happy Valentines Day to everyone here <3

Here is an update on me (for anyone on Facebook, this is the same). It was almost a year ago that I woke up from thoracic surgery in a foreign country and was told that the cancer had spread quite aggressively and could not all be removed from my body. A month previously, the CT looked great and I was anticipating coming home NED. Surgery revealed progression to my plura and local lung lymph nodes. Fast forward to today and I have finally found out the written results of my most recent CT that was taken a while back. It looks great!!!! I have three spots....one of which is of concern, but is stable and under a cm, and could be dead. The other two, one I believe to be scar tissue from one of my lung surgeries, the surgeon in Germany reviewed the scan with me and it seems to be the same. The 'other' spot, is so small it couldn't be measured by the radiologist, and this was noted. So, in summary, whatever it is, its working. When I was first diagnosed with lung mets, I had 'several'. How many 'several' was, I really cannot say as I never got a clear indication from my local doctors. What I can say is that I had 15 lung mets surgically removed, four were NOT cancer.

Now I need a plan coming up to the next scan. My oncologist mentioned a 'break' if the next scan looks good. I'm afraid of a break. I need a plan! I am in the midst of scheduling an appointment with Dr. Lin to disucss ADAPT. He is waiting for a sample of my tumor for testing. There is an insurance issue here in Ontario, if stop Avastin, I cannot use it again if I need it, and it seems to be doing something. If I add Celebrex to FOLFIRI and Avastin, the side effects are exacerbated (potentially). I will consult Dr. Lin about this. I'm also considering a German clinic for a few weeks if I take a break for some 'treatments'. Or, maybe just take a 'break'? I'm scared to stop chemo, I've been on it for ten months...

@Rubyred, I'm sorry to hear about your sister. This disease is awful, but can be managed to a point. There is a lot of great information here and amazing people for support. You may want to consider posting your question on the main board for greater input :)

cb <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...

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Sat Feb 14, 2015 6:38 pm

Hi Rubyred,

I'm so sorry to hear about your sister, and think YOU are a great sister to try to find additional info to help her.

If you do a general search on the board for the drugs she is on, you will get more information that you'll probably have time to read..

The other thing you could do is start a new thread with your question so that it won't be buried in the mCRC thread.

Also, there is a "caregivers" thread that has been active for a number of years. You could visit there, too.

Best of luck to you both.

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

Irinotecan and Vectibix

Postby O Stoma Mia » Sat Feb 14, 2015 7:53 pm

Bev G wrote: Hi Rubyred (...)The other thing you could do is start a new thread with your question so that it won't be buried in the mCRC thread (...) Also, there is a "caregivers" thread that has been active for a number of years. You could visit there, too (...) Bev

Hi Rubyred -

I agree with Bev.

Last edited by O Stoma Mia on Thu Mar 05, 2015 12:58 am, edited 1 time in total.

mich
Posts: 76
Joined: Fri Aug 27, 2010 11:07 pm
Location: Los Angeles

My hub is an Olymphian but having one sided back pain?

Postby mich » Sat Feb 14, 2015 7:58 pm

Does anyone know what this back pain could be? he is getting radiation on chest lymph nodes but having severe back pain,,,he is hesitant to go check it out.
Dh DX 1/07 stg 4 age 48
colon & liver resect
1 yr chem
3yrs NED
6 mnts chem no oxy
6/12 node active
7/12 peri node excised
8/12 Rad & chemo
4/13 Lung met
lobe removed
11/2013 chemo
4/17/2014 Nodes
radiation/ not Erbuitux candidate
Cancer spreads ..starting Stirvarga
Lasted 9 weeks on stir varga
Passed away Nov2015

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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 » Mon Mar 09, 2015 11:32 pm

Just checking in. Recent pet-ct scan shows no growth. Tumors same size as last scan, which is good from a relative standpoint. Will get a longer break! Believing for at least 2 more months.

Have been cooking a ton! Thai, malaysian and dumplings for bun! She is very happy to have some dishes from home.

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

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

Still not dead yet...

Postby pog451 » Tue Mar 10, 2015 10:51 am

...although apparently it's been close a couple of times.

I've finally made it home - I originally didn't want to die at home but the palliative clinic was 40 mins drive away and I just wasn't seeing my family. It's nice being home.

Had a horrible shock in the mirror this morning, wondering who that emaciated old man was, but I'm afraid it was me :(

Still can't eat, but drinking is ok, so I subsist on Soup, MacDonald shakes and emend.

The wife's having a hard time of it, repeatedly saying goodbye and then I pull through, but apart from actually going the next time I'm on the edge I'm not sure I can do anything about that. Our friends are all yay! What a fighter! Which is sweet but not really helpful.
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

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Tue Mar 10, 2015 11:58 am

Tom, I'm so glad you are getting to take a break. Are you still working?

pog, home must be better than the hospital, I'm betting. The roller coaster is just not a fun ride for you or your wife. Can't we just order up a lazy river and float in an inner tube off into eternity? Seriously, if there were a god, wouldn't you think??? (with apologies if I've offended anyone, but I do feel that way)

Nik Colon

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Nik Colon » Tue Mar 10, 2015 12:02 pm

Skypup wrote:Tom, I'm so glad you are getting to take a break. Are you still working?

pog, home must be better than the hospital, I'm betting. The roller coaster is just not a fun ride for you or your wife. Can't we just order up a lazy river and float in an inner tube off into eternity? Seriously, if there were a god, wouldn't you think??? (with apologies if I've offended anyone, but I do feel that way)

Not sure about lazy rivers, but we are the state of 10,000 lakes here in MN :)

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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 Mar 10, 2015 2:20 pm

SkyPup,

Am working, but not traveling as much. My first international trip this week. Working with the team in tokyo and Hong Kong. Should be fun!

How are you holding up?

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

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Tue Mar 10, 2015 2:54 pm

Tom, so glad you are getting to travel, I know how you love it!! I am having a good time of it (yea, it's relative.) I reduced my chemo dosages to a bearable point, will know next month if it works, Am planning a long walkabout as soon as spring comes to the mountains!

Btw, I saw sous vide cooking on the Food Network a couple of days ago and thought of you. :)

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pollo65
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Facebook Username: pollo2
Location: central valley, calif

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Thu Mar 12, 2015 1:11 pm

Haven't been around for quite awhile but have missed everyone so decided to come back. This is not meant to be a whine but more of a reflection. Went to e.r. for back pain, found the herniated disc s but no mets. Saw my onc and he talked me into skipping ct due the same day. Had a long talk about next steps in light of damaged liver (chemo) and kidneys. He is hesitant to do more chemo unless mets grow more rapidly. It may sound strange but I am at a point where I just sort of see myself getting weaker and slipping away. I have lost 20 lbs in the last year and feel crummy with this new back pain. I just wonder if anyone else feels like this. I have had six years and am grateful.
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

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

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby skypup » Fri Mar 13, 2015 12:32 am

So good to hear from you, Pollo65. You know we are in pretty much the same boat, and we address and accept it in pretty much the same way. Gratitude, yes. Slipping away, yes. Still kicking, yes. I was listening to some Jimmy Buffet music not long ago and the song "Living and Dying in ¾ Time" resonated in a whole new way. With so long to live with an incurable disease, so much longer than I've a right to expect, and having gradually slowed down the pace of my life and finding myself no longer to hike as strenuously as I always enjoyed, I realized ¾ time was a really good description. Sounds like you might understand this. Shall we waltz?

I do hope your back pain dissipates and you can keep getting those dances in!

xoxo,
puppy

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Bev G
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Location: Quechee, VT

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Fri Mar 13, 2015 6:58 am

((((pollo)))
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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