Stage IV Newbie with a question

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TLynn
Posts: 2
Joined: Mon Feb 09, 2015 5:26 pm

Stage IV Newbie with a question

Postby TLynn » Mon Feb 09, 2015 5:41 pm

New member here. Diagnosed with Stage IV colon cancer in Nov 14. Forgive me if I don't have all of the nomenclature down. Trying to understand it all. Have sigmoid colon tumor, as well as cancer in one lymph node, & 3 liver spots. Have undergone 6 rounds of chemo with PET scan last week. Good news is that 2 of 3 liver spots are gone and the other one reduced by 60%. Also, the lymph node & colon tumor also dramatically reduced by over half. Very excited that the chemo was working.

One bad note was there is a 1.5 cm NEW spot on either my peritoneum or in my spleen. Will probably have to do an MRI to determine exact location. My oncologist is working with my surgical team to determine the next action. I was told that those areas are difficult for chemo treatments to reach.

So my question is: Has anybody else have something similar happen to them? If so, what was your next step? Scary that treatments were working so well, but during that time, something else began to grow.

Thanks for you advice.

Nik Colon

Re: Stage IV Newbie with a question

Postby Nik Colon » Mon Feb 09, 2015 7:26 pm

Sorry for your current issue. I don't have any answer but wanted to bump this up in hope someone can help

AbsumZero
Posts: 43
Joined: Sat Sep 27, 2014 2:39 pm

Re: Stage IV Newbie with a question

Postby AbsumZero » Mon Feb 09, 2015 10:20 pm

I haven't had either but based on what I've read spleen involvement is often treated by removing the spleen. It leaves people susceptible to certain infections due to the role it plays in the immune system but it's entirely possible to live without it. HIPEC seems to be the new standard for peritoneal treatment and I think others on the board can tell you their experience with that.
7/14 DX Stage 4 w/kidney mets @ 32
8/14 resection, nephrectomy, & temp colostomy, 4/36 lymph nodes
9/14 Common iliac chain node mass
10/14 XELOX and Erbitux
1/15 NED

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Stage IV Newbie with a question

Postby GrouseMan » Mon Feb 09, 2015 11:56 pm

I assume you are on FolFox. It sounds like that is working well for your liver mets. As for spleen mets. My wife was dx with liver spleen and possibly lungs mets. She had a resection of her sigmoid colon area to remove the primary. FOLFOX with Avastin worked quite well on her spleen mets and liver mets. No change at all in her presumed small lung mets. In fact they can't be sure these are even mets. However, her spleen mets they can no longer see in her CT scans. As I understand it, colon cancer mets to the spleen are kind of rare. Usually it's liver then lungs, sometimes it skips the liver first and goes straight to the lungs. Spleen mets I think are more likely when the primary is in the sigmoid area close to the spleen and the primary has managed to perforated the colon and invade surrounding tissue.

My wife is doing very well on once every three weeks 5-FU / Leucovorin and Avastin as maintenence therapy. The original FOLFOX with Avastin really knocked her mets down to the point this maintenance therapy is keeping things quite stable. She has not really had any problems with her Chemo to speak of. Just fatigue the week of her infusions. But she is still very active, and physically fit otherwise. The only thing she supplements with is 800 mg of Tagamet, a good multivitamin, Calcium, and Vitamin D.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

TLynn
Posts: 2
Joined: Mon Feb 09, 2015 5:26 pm

Re: Stage IV Newbie with a question

Postby TLynn » Tue Feb 10, 2015 9:23 am

Thanks so much for the responses. Yes, I was on Folofox and Avastin. Take home the 48 hour pump, too. Dr went ahead and gave me the Folofox and pump yesterday, but held off on Avastin in case we are proceeding to surgery soon.

Guess I will wait and see what the next step is.

Thanks again for everyone that posts on this board. I lurked about for the last couple of months reading many of the posts. Everyone's input and feedback is much appreciated.

TLynn

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: Stage IV Newbie with a question

Postby Delinda2 » Tue Feb 10, 2015 2:01 pm

Welcome T, but so sorry you need this group. Sorry I don't have much (any!) technical knowledge, just wanted to say hello. Many people here have a vast amount of knowledge & I'm sure you'll find this group to be a great resource. Good luck to you & let us know how it goes. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

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

Re: Stage IV Newbie with a question

Postby Bev G » Tue Feb 10, 2015 6:03 pm

Hello and welcome. Unfortunately you won't ever be alone here---there are awesome people and a bunch of us with stage IV disease. I couldn't tell if you still have your primary colon tumor, or has it already been resected? If you haven't had surgery yet you might want to talk to the surgeons about doing a combined colon/liver resection. It would be great to get those pesky crap-heads out of your liver. Grouseman is right (as usual)--splenic mets from CRC are really uncommon and maybe aren't even mets---were they seen on your PET scan? If you are having surgery soon it will be a great opportunity to have someone take a careful look at your peritoneum.

Again, welcome. I hope you will feel cared for and supported here.

Best wishes,

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: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Stage IV Newbie with a question

Postby O Stoma Mia » Tue Feb 10, 2015 6:55 pm

Hello T -

I'm sorry to hear of your uncertain situation. If you get a chance, could you create a Signature so that readers can see your situation and your current status at a glance?

A link to the Signature creation page is here:

Create Signature
ucp.php?i=profile&mode=signature

Here is a draft of what your situation might look like. Is this correct? If not, make appropriate changes before setting up your Signature.

    Draft signature

    DX 11/14
    Stage IV, with 3 mets to liver and 1 lymph node.
    neoadjuvant chemo: FOLFOX+Avastin, 6 cycles
    2/15 PET scan - some shrinkage, but new met found near spleen
    Soon: LAR for sigmoid tumor removal.

lizzy4k
Posts: 6
Joined: Fri Jan 10, 2014 7:05 pm

Re: Stage IV Newbie with a question

Postby lizzy4k » Tue Feb 10, 2015 8:21 pm

I'm sorry to hear of your situation but can offer advice from my perspective. Go for surgery when you can get it, especially when you're young. I always asked how to get to that step the quickest. My sigmoid tumor had completely blocked my colon, so I guess that's the reason surgery was first, followed by chemo. Then the liver was dealt with after chemo shrunk/eliminated some of of those tumors (approx 8). I had the right lobe done first, then later the left when a new spot appeared. I much prefer surgery to chemo, when I get to choose.

Keep us posted and prayers for you!
Liz
Stage IV Sig CRC FEB 2011 Age 47
Mets liver, lungs
KRAS mutant
Colon & liver resect
lung biop pos.
peri-panc node resect
Mix in FOLFOX, FOLFIRI, Avastin Radiation
Zaltrap & Xeloda Trial - limited response
CURRENT: Stivarga & Jakafi trail

Leighann Sturgin
Posts: 54
Joined: Sat Jan 25, 2014 9:35 am

Re: Stage IV Newbie with a question

Postby Leighann Sturgin » Thu Feb 19, 2015 3:52 am

O Stoma Mia wrote:Hello T -

I'm sorry to hear of your uncertain situation. If you get a chance, could you create a Signature so that readers can see your situation and your current status at a glance?

A link to the Signature creation page is here:

Create Signature
ucp.php?i=profile&mode=signature

Here is a draft of what your situation might look like. Is this correct? If not, make appropriate changes before setting up your Signature.

    Draft signature

    DX 11/14
    Stage IV, with 3 mets to liver and 1 lymph node.
    neoadjuvant chemo: FOLFOX+Avastin, 6 cycles
    2/15 PET scan - some shrinkage, but new met found near spleen
    Soon: LAR for sigmoid tumor removal.



This is a great idea OSM. Why don't you take your own advice! :wink:
F 44 yo
3/04 dxd colon cancer stage IV (Lynch)
4/04 colectomy
chemo
8/04 hyserectomy
1/05 debulking, HIPEC, ileostomy
short bowel syndrome- TPN and IV fluid dependent
1/06 HIPEC
07 splenectomy
Vaccine trail
12 right nephrectomy
NED since 07
2015 Colondar 2.0 Miss May
2016 Kidney disease
2016 permanent left nephrostomy


The Kimberly Fund Director


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