Totally in Shock Stage 2 to Stage 4 in 9 Months

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Gloriamazz
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Thu May 30, 2019 7:15 pm

Fluff Bottom wrote:Hang in there girl! Maybe search for some positive stories on all the Stage 4 people who are surviving and thriving. You’d be amazed at how many there are. I don’t blame you for being scared, I’m scared sometimes too. We are all in this mess together!

There are so many smart, compassionate people on this board that are always willing to help whenever they can.


Hi Fluff Bottom, Yes there are a lot of knowledgeable people on this board. I can identify with symptoms and treatments and processes that is discussed.

I met with my Oncologist today and she gave me a lot of information. She reiterated that I am stage 4 and the plan is to have a port inserted 6/5/2019 and education. June 10, 2019
Start Chemo Care (Folfox 4-5 hrs)

How are you feeling?
Hopefully starts shrinking Pelvis mass to help pelvis pain. Is there anything I should be aware of that will make the 1st treatment easier. she also mentioned Palliative care which is fine for pain meds. This is going to be a long road I hope and pray not to many big bumps
Last edited by Gloriamazz on Tue Jul 09, 2019 2:53 pm, edited 2 times in total.
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Fluff Bottom
Posts: 73
Joined: Fri Oct 23, 2015 8:13 am

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Fluff Bottom » Thu May 30, 2019 9:13 pm

FOLFOX is tough but doable. I worked full time the whole 7 months or so that I was on it. Taking the pump home was annoying but it’s only for 2 days.

I would guess that the majority of the folks on here have done FOLFOX at one time or another. There are tons of posts about dealing with the side effects. To me the cold sensitivity and neuropathy were the worst part. Of course it effects everyone a little differently. It’s been around a long time so before your infusion they know what pre meds to give you to help.

My infusion went well today. No reactions or anything. Just waiting to see what degrees of vectibix rash I might get.

Things will seem so chaotic at first but once you settle into some kind of routine I promise it gets slightly easier to deal with!
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

Gloriamazz
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Fri May 31, 2019 10:20 pm

Fluff Bottom wrote:FOLFOX is tough but doable. I worked full time the whole 7 months or so that I was on it. Taking the pump home was annoying but it’s only for 2 days.

I would guess that the majority of the folks on here have done FOLFOX at one time or another. There are tons of posts about dealing with the side effects. To me the cold sensitivity and neuropathy were the worst part. Of course it effects everyone a little differently. It’s been around a long time so before your infusion they know what pre meds to give you to help.

My infusion went well today. No reactions or anything. Just waiting to see what degrees of vectibix rash I might get.

Things will seem so chaotic at first but once you settle into some kind of routine I promise it gets slightly easier to deal with!


Hi Fluff Bottom,

I am not a stranger to Neuropathy as I am a diabetic and am going on sixth year with Neuropathy. I hope it doesn't get worse.

You are a saint for working. I wouldn't be able to work. I am in too much pain 24/7. The pain lets ups throughout the day.

I sleep a lot probably motrin and Tylenol and pain knocks me out. On Monday I go for the port and Wed teaching then the following Monday treatment.

Ihope it shrinks and gives me pain relief. I totally don’t know how overnight went from stage 2 to 4. Thanks again for your input.
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

teacher2017
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Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby teacher2017 » Sat Jun 29, 2019 9:13 pm

Two years ago I never would have thought I’d be posting on here and other sites trying to give some hope. I went from 3c to 4 and was absolutely devastated. Long story short, after a successful liver resection, I have been NED for nine months! I did the 12 rounds of folfox before the resection. I had no chemo after the surgery too. It’s a terrible game of Wack-a-Mole but many many people live a long life with stage 4. Go on those sites and put in stage four survivors! You will be shocked! Your emotions are valid. It’s time to learn all you can and advocate for yourself.

We are here.
L.
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19!

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby stu » Sun Jun 30, 2019 12:09 pm

Love that you are teacher . A light on a difficult journey .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby LeonW » Wed Jul 03, 2019 6:02 am

teacher2017 wrote:. . . after a successful liver resection, I have been NED for nine months!

Cea level- 1.2 6/2/19 . . .
Clear scan- 6/2/19
Still here!!!!!


Congrats teacher :D Keep it up
Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

Beccaschocked
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Facebook Username: Becca Fender schock

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Beccaschocked » Wed Jul 03, 2019 8:02 pm

I’m so sorry to hear you’re facing this diagnosis.

As a stage IV survivor (mets to liver then recurrence to lungs) I wanted to tell you there are a lot of us out there, and there is a lot of hope to be had.

When I was diagnosed my tumors were HUGE and the outlook was bleak, but chemo worked well and eventually I was surgical. My recurrence hit me harder than my initial diagnosis, but once again, treatment was successful and left me NED. I’m over 4 years out from original diagnosis and 1.5 from my recurrence.

Hoping treatments go well, provide quick relief, and kick cancer’s ass.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection; 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.; 1.0; 1.1; 1.1; 0.9
7/18, 1/19, 7/19 clean scans NED

Gloriamazz
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Mon Jul 08, 2019 6:22 pm

Last August it seemed so hopeful have an LAR permanent ostomy remove rectum. Went through hell with this had 2 abscesses. And have had one or two pain free days in the past 12 months. I am constantly in pain in my pelvis area area.

Went for 6 months check up CT Pelvis radiologist said all clear. The radiologist did not put they found a super dense tumor until the following month I had more pain than usual this was in April. I Call for this new pain andwas sent for CT. Cat revealed the super intense tumor they called it recurrence. They did. Lung cuz there were two nodules now have 2 more total of four. One grew one stayed the same and two new one. Now they call me stage 4 metastasis to lungs. I am scared what does all.of this me
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Gloriamazz
Posts: 65
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Tue Jul 09, 2019 2:26 pm

Gloriamazz wrote:August 2018 I had a LAR was told by my board certified surgeon since I had colorectal cancer stage 2 with
no nodes involved and did not invade any other organs to get the Barbie Butt and permanent colostomy.

The tumor was four inches away from the Anal Verge plus I would not need Chemo and Radiation. Surgery was 4 hours and doctor said margins clear and he got all the
cancer.

Needless to say I was in pain for 6 months some days worse than others.

In February had my 6 month scan with no mention of any new growth every thing ok with the exception of 2 nodules that were 3 millimeters on my my lungs to be watched and CT in 6 months (Sept 2019). Too small at this point to do anything.

Onward and upward. In March 2019 had rectal pain that was very hurt more than the usual pain. I called my surgeon and he ordered a CT.

The CS came back with a tumor of 1.8 x 1.8 I'm on my sciatica nerve. They called it Recurrent. Had a Biopsy 2 days later and confirmed recurrent colon disease

It also referenced the nodules that grew that are on the lungs at this time have 2 lung nodules

With this info I got an oncologist. I said was not comfortable waiting 6 months for CT scan on lungs in 6 months and wanted a second opinion.

She agreed with Doctor to wait the 6 months

Now with the new nodule on pelvis she ordered a CT for my lungs and it comes up with one nodule doubled in
Size and have two new ones and now calling stage 4 metastatic disease

This blows my mind. It sounds like a death sentence

Does anyone else have a similar situation. I am so very upset and scared

size
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Gloriamazz
Posts: 65
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Tue Jul 09, 2019 2:47 pm

Hi

I just had 2 chemo treatments folfax but since pain relentlessness where super intense pelvis tumor is my oncologist decided to stop chemo and do 5 radiation and go back to chemo after.

I dont understand how this cancer travels so fast. I dont feel well although that could still be chemo.

Do we ever feel better again.

How do I reach other colon cancer Stage4 mets to lungs and recurrence to pelvis In a short 6 month period.

Some people say never. Eat sugr
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Gloriamazz
Posts: 65
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Tue Jul 09, 2019 5:53 pm

Hi Fluff bottom.
I was reading are cancer bios and they are very similar. The CC and the Met to lungs. I am so sorry the met to lungs happened to you after a couple of years of being cancer free.

I don’t understand cancer All I know is I had colon cancer. and was operated on and now-perm Barbie had abscess a lot of pain and was calming down and 6 months later newer pain. On pelvis they call Super Dense tumor was going to do radiation they checked lungs and had 2 nodules now 4 nodules 1 grew 1 didnt grow plus 2 newones a total of 4 last month. Needless to say now doing 5 treatments of radiation to recurrencetumor. Andstopped Folfax until finished with radiation.

I developed a cough dont know ifrelated.

What are they doingfor you lung mets You are very strong and to have worked God is with you better believeit.
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.


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