I need a little hope

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Re: I need a little hope

Postby Basil » Sun Jul 16, 2017 1:07 pm

Don't know if this is the right thing for you but I leaned on Xanax the first few weeks. Helped tremendously with sleep and anxiety. I still take one anytime I'm heading up to MD Anderson.
40 y/o male (now 43), kids 9 & 12
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
1 year scans - clear
2 year scans - clear
3 year scans - clear

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Facebook Username: cancerIsSOfunny

Re: I need a little hope

Postby ranger » Mon Jul 17, 2017 2:32 am

I'm very sorry you received bad news Maybe this will give you Hope: My colon cancer had spread to my liver by the time I was diagnosed. The general surgeon who cleaned up the mess when my colon perforated gave me the news. I was pretty sure I would die sliced up and skinny. Then I had my first appointment with an oncologist.
My doctors always thought I had a chance for resection (Georgetown University Hospital in DC and Johns Hopkins in Baltimore), which lifted my 5-year survival odds from something like 4% (Dr Google) to something like 40%. (Dr. Google).
I've never had a recurrence and my health has been good since that year of surgeries and chemo.
That was 2009. Celebrating 8 years NED (no evidence of disease).
I hope this encourages you.
Amy (strange ranger).
There is no false hope. There is only hope.
colon resection 3/09
liver resection and takedown 8/09
11 rounds of folfax, avastin. plus AM655 or placebo, completed jan 2010
hernia repair 3/11
https://m.facebook.com/Cancer-is-SO-fun ... 100303900/
age 69, never thought I'd make it. happy.
NED a long time.
Essential Thrombocytosis, monitoring
still here.

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Re: I need a little hope

Postby HopeForJesse » Mon Jul 17, 2017 7:52 pm

Hello! Just wanted to add to the messages of HOPE. You are in the right place: the club NO one wants to join but all so grateful to find. Signature below tells our story. Best wishes to you.
DH DX 01/16 49 YO inop RC stage IV liver mets
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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Re: I need a little hope

Postby mom_2_3 » Mon Jul 17, 2017 10:55 pm


Just had my 8 year scan at MSK this morning. Will get the results later this week on the portal and will see my doctor next week. I had 5 liver mets across both lobes and a local doctor here in NJ gave me discouragement about survival back in 2008 when I was diagnosed. So, I found another doctor who offered more hope for my condition. I had surgery and have been NED since 2/2009. Like GFPIV, I have an HAI pump but have not used it since 2009. Been meaning to have it taken out but always seem too busy to get to my surgeon for the removal. My feel for that original doctor was that he was seeing countless patients across all cancer types. He had no specialty so he had very little basis for hope for me as he hadn't treated very many Stage IV colon cancer patients. My oncologist ONLY treats patients with colon cancer so I know that she not only is a major researcher in this area but also knows all other studies and treatments for colon cancer.

CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

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Re: I need a little hope

Postby LeonW » Tue Jul 18, 2017 5:25 am

You haven't added detail to your signature (yet?), so I don't know how similar we are.

At Dx I was assigned palliative, despite only a few (2) liver mets. Reason was their size - too big for resection. Attacking the colon tumor was the only thing feasible, then. I still have bad memories of the introductory talks with an overly empathetic palliative nurse who felt sssoooo sssoooorrryyy. Doesn't work work me. I need facts; will deal with the coping details myself. I need info to define expectations / my roles in it all; what I can/need to do myself; realizing that I need to rely on my docs as I simply don't have their knowledge. Luckily I (also then) had an open and honest onc who fully gave all info I needed. She promised fully bet on going for *aggressive* adjuvant chemo, despite these mets.

When liver was attacked 9 mos later, there were no living cancer cells left. Capox had given 100% result - on hindsight all the jazz about the liver resection surgery *might* not have been necessary after all (haha).

My take on it all is that we've just been somewhat unlucky to draw a bad straw; there are too many straws to get cancer. To kick the beast we need the opposite - good fortune; the problem is that these are not so plentyful so rare. To me, prospects percentages are not verdicts, just an indication of how much/little good luck is needed.

My advice: hope for luck and don't forget to live in the mean time. Make sure you celebrate every small win on the road ahead

Best wishes, Leon
Last edited by LeonW on Wed Jul 19, 2017 8:31 am, edited 1 time in total.
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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Re: I need a little hope

Postby juliej » Tue Jul 18, 2017 5:10 pm

Let me add to the hopeful stories. I was diagnosed with liver mets in all lobes of my liver plus a big fat met in each lung. :shock: My local cancer center said I was inoperable and would be on chemo until it quit working. I felt really discouraged but then I got a second opinion at MSKCC and everything changed. I too had an HAI pump implanted, followed by successful liver and lung resections. I'm now cancer free. :D

Get a second opinion at a top-tier cancer center, learn everything you can about your particular cancer (get genetic testing for BRAF, KRAS, etc.), and be assertive about your treatment options. No door can close completely if you put your foot in it and keep pushing.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Re: I need a little hope

Postby mariane » Tue Jul 18, 2017 8:41 pm

In June 2015 I learnt that I had colon cancer with liver mets ( big and fat). There were 10+ of them. Radiologist stopped counting. The largest was 7.5cm. I received gruesome prognosis. Oncologists gave me 2 years with chemo and maybe only 3 months if cancer would not have responded to chemo,. I signed papers that I am terminal and my treatment is only palliative.
Broken I turned the computer and searched the internet. I wrote: "stage 4 colon cancer survivors" and among many found forums and posts about HAI pump and Dr. Kemeny from MSKCC who invented it.
I got colon resection since my oncologists suggested that usually even palliative resection reduces cancer mass and prolongs survival. I had 6 years old twins. I desperately wanted to live. 2 weeks after my resection I was in NY and had and saw famous Dr. K for the first time. She told me that they would do anything for me so I could see my kids grow.
10 months and 3 liver surgeries later I was NED. It was in May last year. After resection I have been living good , normal life. I had to quit my good, fulfilling job, leave my country but I am very much alive. I raise my kids, volunteer at school and church, do gardening and even build a retaining wall in our yard. I feel healthy.
I started studying to come back to work here. Maybe I will choose a bit less stressful and demanding job in time if my scans will still be clear.
There is hope.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: I need a little hope

Postby WarriorSpouse » Tue Jul 18, 2017 9:57 pm

You will find many on this board living a "new normal" after getting properly diagnoses, having a plan of attack, and implementing said plan. Hope is found in the many here that are living their lives despite the diagnosis... Some more than 7-10 years.

I would get to MD Anderson and really listen to what they want you to do and how they want you to do it. There has been much progress in CRC and the new numbers are yet to be determined now that some have had great success with certain surgeries, chemo and Avastin treatments.

You are on a road well travelled by others. Trust your Doctors at MD Anderson and put your plan into action with a sense of purpose. Many feet equal a mile, and many miles will equal months and years... The road may appear long, so break it up into smaller goals. Check them off as you come back to a sense of normalcy again, and you will as long as you keep your focus on what is directly in front of you.

Win each day, and then the next, and before you know it, you find that you are in more control than you ever thought!

Good luck with your visit at MD Anderson... We are here for you:)
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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Re: I need a little hope

Postby ANDRETEXAS » Tue Jul 18, 2017 10:49 pm

I am also in Austin. Where were you diagnosed in Austin?
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
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
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
3/23- clean CT
2/22- clean CT
3/21 - clean CT
4/11 - clean colonoscopy
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023


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Re: I need a little hope

Postby Rainykatie » Wed Jul 19, 2017 3:36 pm

Hi there! I am sorry you are going through this, but this post is full of hope. I am a supporter/caregiver to my mom who also has Stage IV with liver mets, also told she is inoperable. I've only been here a few months but I know what it is like to receive such news and grapple with the tough emotions and choices that follow- it is so overwhelming and it still is for me.

I am so encouraged reading all of these good and hopeful stage IV stories!

As for my mom, she just went through her 6th round of FOLFOX in 3 months and she is doing so much better. The doctors have been absolutely amazed by the shrinkage of her mets and primary tumor, and she may be a candidate for surgery in the future if these results continue. We are going for a second opinion at Memorial Sloane Kettering in August.

I've learned so much in these past few months, including that stage IV patients can have a great quality of life and that this diagnosis doesn't have to be a death sentence. You've found a great place to come for support and hope.
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

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Re: I need a little hope

Postby peanut_8 » Wed Jul 19, 2017 4:19 pm


I'm in Austin also. Feel free to send a PM if you want to chat. There are lots of folks here with a stage 4 diagnosis who are doing really well.

Best Wishes,
aka Terri
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Re: I need a little hope

Postby pdp497 » Wed Jul 19, 2017 5:15 pm

I was diagnosed at St. Davids Round Rock. I had a follow up appointment with the oncologist and she wants to await the results of genetic testing on the tumor before coming up with a treatment plan. We are also waiting in an appointment at MD Anderson they are currently saying they can't get us in until August 14 but be are pushing for sooner as we don't want to wait to begin treatment. Does anyone have an opinion on whether it makes more sense to start treatment as soon as possible even if it delays getting a second opinion at MD Anderson or if it is better to wait an extra few weeks to get their thoughts before doing anything?
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
8/4 CEA 240

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Re: I need a little hope

Postby Basil » Wed Jul 19, 2017 11:11 pm

I would wait to get into Anderson. I'm there and my docs were not slow, but not overly aggressive into getting to the treatment part. Said it was slow growing thing. I'd think the benefit of md Anderson expertise would be worth a slight delay.
40 y/o male (now 43), kids 9 & 12
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
1 year scans - clear
2 year scans - clear
3 year scans - clear

Posts: 2527
Joined: Fri Jul 21, 2017 3:43 am

Re: I need a little hope

Postby NHMike » Fri Jul 21, 2017 4:56 am

My sister told me about two friends that had poor prognosis. One was given 18 months to live but is still alive over two years later. The other had Stage 4 Ovarian and she had her surgery over 18 months ago and no recurrence so far. Both used a cancer nutritionist (doctor that had cancer himself) that I asked her about. I am giving some consideration to talking to him about what he does.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Re: I need a little hope

Postby tater » Fri Jul 21, 2017 11:53 am

thank you for this thread, I too need some hope for my wife.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

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