Hello. Newly diagnosed with Stage 4.

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atiffyfit
Posts: 9
Joined: Wed Mar 11, 2015 6:59 pm

Hello. Newly diagnosed with Stage 4.

Postby atiffyfit » Wed Mar 11, 2015 7:25 pm

Hi all.

I sure was glad to find this forum during a google search. Just lurking and reading the last little bit has already been a little relieving.

My name is Tiffany. I'll be 37 at the end of this month and I just had a sigmoid colectomy to remove a tumor the size of a plum on March 5th. During my surgery, the surgeon discovered it has spread to my liver and upon waking from the surgery, informed me that I have stage 4 and that he was sorry to inform me of this. He said he has seen patients survive for 3 to 5 years with aggressive chemotherapy and that I'll see an oncologist shortly after my surgery, with chemo beginning a month or so later. He said to embrace clinical trials and not to worry, that chemo has improved from the horror it was 30 years ago.

My appointment with an oncologist is tomorrow. And I can't come up with a damn question to ask. I'm kind of just in a haze. And kind of in a state where, hey I know what we need to do, let's do it, and hope I'm the pot of gold that responds well and keeps it in check for 20 years!

Anyway. Just wanted to say hi. And to thank all of you for sharing your stories so that it's not so overwhelming for someone new to the club.

Tiffany

justAfterTEM
Posts: 25
Joined: Tue Dec 31, 2013 11:49 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby justAfterTEM » Wed Mar 11, 2015 8:12 pm

Sad news to hear. You may want your intentions made very clear to the oncologist. For ex, if you want to pursue aggressive treatment, make sure your doctor knows this, and ask them what it will take for you to be eligible to get liver surgery.

atiffyfit
Posts: 9
Joined: Wed Mar 11, 2015 6:59 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby atiffyfit » Wed Mar 11, 2015 8:19 pm

justAfterTEM wrote:Sad news to hear. You may want your intentions made very clear to the oncologist. For ex, if you want to pursue aggressive treatment, make sure your doctor knows this, and ask them what it will take for you to be eligible to get liver surgery.


Yes, definitely not pleasant news, but I'm just gonna roll with it and attack! I will definitely make it clear I want the most aggressive treatment possible; thank you for bringing that up. I figured they would just go for it and I wouldn't have to ask, but I'll be sure to be precise. I had asked about a liver transplant in the hospital, but I was still in post-surgery haze. I believe he told me it wasn't a good option, but I'll get some more answer from oncology tomorrow.

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Hello. Newly diagnosed with Stage 4.

Postby Nik Colon » Wed Mar 11, 2015 8:20 pm

Sorry for the news but glad you found this forum. Try not to think negative. Wait til you talk to the onc. Stage 4 does not mean terminal. I am stage 4 and there is a possibility I can be cured. Keep your head up and try to relax. It's a lot to take in but just take it one step at a time. Best wishes on your upcoming appointment.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

atiffyfit
Posts: 9
Joined: Wed Mar 11, 2015 6:59 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby atiffyfit » Wed Mar 11, 2015 8:27 pm

ritz75 wrote:Sorry for the news but glad you found this forum. Try not to think negative. Wait til you talk to the onc. Stage 4 does not mean terminal. I am stage 4 and there is a possibility I can be cured. Keep your head up and try to relax. It's a lot to take in but just take it one step at a time. Best wishes on your upcoming appointment.



Thank you! :D I'm definitely a positive person so that should be fairly easy...to avoid thinking negative, anyway. And thank you for saying it doesn't mean terminal. I will keep my fingers crossed for the best possible outcome!

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby lpas » Wed Mar 11, 2015 8:32 pm

Hi Tiffany,

I'm so sorry you had to find us, but you've come to the right place. I agree that you need to find out if your liver is currently operable and, if not, whether chemo may be able to get you there. Chemo can help control cancer but it's generally the case that only surgery can provide hope for a cure. I would also ask your doctor's opinion about the HAI pump (a specialty of the renowned Dr. Nancy Kemeny at Memorial Sloan Kettering). There are many here with liver involvement who've done very, very well with the pump. In addition, consider asking for tissue testing to determine which mutations your tumor has. This can help in determining which chemotherapy agents will work best for you, and could be particularly helpful in identifying potential clinical trials. Good luck and please let us know how it goes!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo

atiffyfit
Posts: 9
Joined: Wed Mar 11, 2015 6:59 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby atiffyfit » Wed Mar 11, 2015 9:57 pm

lpas wrote:Hi Tiffany,

I'm so sorry you had to find us, but you've come to the right place. I agree that you need to find out if your liver is currently operable and, if not, whether chemo may be able to get you there. Chemo can help control cancer but it's generally the case that only surgery can provide hope for a cure. I would also ask your doctor's opinion about the HAI pump (a specialty of the renowned Dr. Nancy Kemeny at Memorial Sloan Kettering). There are many here with liver involvement who've done very, very well with the pump. In addition, consider asking for tissue testing to determine which mutations your tumor has. This can help in determining which chemotherapy agents will work best for you, and could be particularly helpful in identifying potential clinical trials. Good luck and please let us know how it goes!


Thank you! My appointment is late afternoon and thanks to this forum and some research, I have a lot of questions for my doctor. :)

Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby Maddielolo » Wed Mar 11, 2015 10:00 pm

Yes, get thorough genetic testing of tumor. Also, is it only in your liver, or elsewhere? If former, investigate hai pump. Iiver transplant is not an option, but a resection could be. You will likely start folfox or folfiri immediately upon recovering. But get tumor diagnosis and explore liver directed options (along with any potential surgical options). Have someone there with you writing down what oncologist says. Glad you found this forum!

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Hello. Newly diagnosed with Stage 4.

Postby Nik Colon » Wed Mar 11, 2015 10:37 pm

Maddielolo wrote:Yes, get thorough genetic testing of tumor. Also, is it only in your liver, or elsewhere? If former, investigate hai pump. Iiver transplant is not an option, but a resection could be. You will likely start folfox or folfiri immediately upon recovering. But get tumor diagnosis and explore liver directed options (along with any potential surgical options). Have someone there with you writing down what oncologist says. Glad you found this forum!

writing down info, yes, or even record on your phone if u can. I didn't and wish I had, so much info thrown at you.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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

Re: Hello. Newly diagnosed with Stage 4.

Postby AbsumZero » Thu Mar 12, 2015 12:14 am

Organ transplants aren't generally done with cancer patients in most countries because of the need for immunosuppressants to prevent rejection, and a weakened immune system can speed-up metastasis. Some day lab-grown replacements grown from our own tissue will be an option but we're not quite there yet.

It'll be important to know how many tumors there are, how large, where, why they aren't currently resectable and if that could be an option if you respond well to chemo. Ask for a copy of the pathology report and get copies of all your scans along with the radiologist's reports for both personal use and 2nd or 3rd opinions.
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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ANDRETEXAS
Posts: 604
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Hello. Newly diagnosed with Stage 4.

Postby ANDRETEXAS » Thu Mar 12, 2015 12:36 am

I know this is a scary time.....and please don't necessarily worry about time frames and statistics. Every person is different. Every person reacts to surgery and chemo differently. I can say that keeping a positive attitude from the begining is something you need to do. So far, I have done it. It, along with exercise, has helped me through my journey. Gather all the facts you can and move forward. There really is no time to dwell on the negative. Good luck to you, and there are many on this forum willing and able to help at any time. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT

ONE DAY AT A TIME !

nashvegas79
Posts: 7
Joined: Thu Mar 12, 2015 1:40 am

Re: Hello. Newly diagnosed with Stage 4.

Postby nashvegas79 » Thu Mar 12, 2015 3:10 am

I was 29 when the large tumor in my colon was finally discovered, and then we also found a small lesion in my liver. I've had a few surgeries and extensive chemotherapy, but I'm still gonna turn 36 in June. Just do what you have to do and don't let your disease define your life. Unfortunately, it is a part of you now. But it isn't all of you. And remember, you could get hit by a bus tomorrow, so don't feel sorry for yourself. None of us know how much time we have left, so make each one shine brighter than the last...until your bus finally comes 'round the bend.

Much love.
Colo-rectal cancer with liver metastasis diagnosed in 2008
Chemo, radiation, then colon and liver resections 2009
2 more liver resections 2009-2011
2013- Liver clear, but small mets spotted in both lungs and rear pleural sac tissue. Terminal condition
Chemo 2013-15
August 2015- Off chemo after tumor growth continued through treatment. Doing radiation on painful tumor in my back for quality of life. Not much time left.

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: Hello. Newly diagnosed with Stage 4.

Postby jillbugs4110 » Thu Mar 12, 2015 5:56 am

Hi

Im.sorry. but remember we are not all eligible for a resection there are more people than I've ever met of seen that are and they have had multiple but this is a website so you know what you know. I know this our diagnosis is similar and I am new to and I Suggest you find a team you trust and listen and learn all you can
Advances are being made daily focus one day and task at a time

I live in oregon not sure where you are but I'm here if you need me I mean it
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Questions to ask your oncologist

Postby O Stoma Mia » Thu Mar 12, 2015 8:47 am

atiffyfit wrote:...My appointment with an oncologist is tomorrow. And I can't come up with a damn question to ask. I'm kind of just in a haze. ...

Tiffany -

If you can't think of any questions to ask, you could look at questions others have asked in the past:

Last edited by O Stoma Mia on Fri Oct 14, 2016 4:08 am, edited 5 times in total.

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Hello. Newly diagnosed with Stage 4.

Postby plastikos » Thu Mar 12, 2015 9:33 am

Hi Tiffany. Sorry to hear about your diagnosis. I know exactly how you feel. We are the same age and I too was diagnosed recently with st. 4 CC. I know that right now it must feel that your world is falling apart. But your surgeon was right, chemo has improved by leaps and bounds and OUR chances of survival are better now than before. Please inquire about the possibility of liver resection.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED


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