I need a little hope

Please feel free to read, share your thoughts, your stories and connect with others!
pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

I need a little hope

Postby pdp497 » Fri Jul 14, 2017 4:32 pm

I was diagnosed today with stage 4 incurable colon cancer spread to the liver. I have been lurking the board the last couple of days as i awaited my results. I am as you can imagine distraught. if anyone has any positive stories that might give my wife and I some hope I would appreciate it.
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)
MSS
KRAS
8/4 CEA 240

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: I need a little hope

Postby Lee » Fri Jul 14, 2017 8:05 pm

Hi and welcome, sorry for the reason you are here.

Who told you had incurable cancer? If it wasn't a surgeon, you might want to get there opinion 1st before assuming you are "incurable". Have you had surgery yet?

Avoid Dr. Google. If you must look, know that most of the info out there is out of date or flat out wrong.

Know that many people are beating this cancer today. When I was diagnosed over 13 years ago, I was told by a few Dr.(s) I only had a 30% chances of being alive in 5 yrs. FOLFOX was experimental than, and has put many people in to NEDville (like me) and are very much alive today. That chemo and a few others have increase people beating this cancer. If I was diagnosed today with my same staging, I would be told I have a 75% chance of being alive in 5 yrs. The next new break through is "Immune therapies". We are fortunate to have 2 knowledgeable people on this forum who are up to date on clinical trials on immune therapies. They are Maia and DK37 (Tom). DK37 has a sticky near the top.

If you have not already done so, get a 2nd (or even 3rd) opinions at major cancer treatment centers or hospital.

There is a thread you might want to read. Celine was given months to live, she is NED today. Her thread has help other people get into the program that saved her life.

viewtopic.php?f=1&t=49736

You will find a lot of knowledgeable people here. We are very fortunate to have this forum with all the support and knowledge.

Please know that a stage IV cancer diagnoses is NOT a death sentence. There are many people who are very much alive, healthy and cancer free. When I was diagnosed, I knew of a women who was told there was nothing they could do for her because of her liver mets. She got a 2nd opinion at MD Anderson in Houston, TX. They treated her and she is NED today. SO do not give up the hope.

So if you have not already done so, get that 2nd opinion at a major cancer treatment center.


All the best and welcome,

Lee

PS Edited to add, Dr. Kemny with Sloan Kettering Memorial in New York City has put a lot of people with liver mets into NED status. There are options out there. It's just finding the right Dr that works best for your wants and needs.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

gfpiv
Posts: 148
Joined: Tue May 25, 2010 9:24 pm

Re: I need a little hope

Postby gfpiv » Fri Jul 14, 2017 9:20 pm

Sorry you had to join the club. I got my stage IV (with over half my liver cancerous) "terminal" diagnosis seven years ago. Not long thereafter, I found this and other CRC discussion boards, heard about HAI (hepatic arterial infusion), and got a third opinion from Memorial Sloan Kettering in NYC. I now technically have no evidence of cancer in my body. Not everyone is as unbelievably blessed in their response to treatment as I have been, but I am certainly not unique. I'm sure you are still struggling to deal with this emotionally, but don't give up hope. If your current oncologist is ready to write you off, look into a second or third opinion (and perhaps consider HAI if your mets are liver-limited) as soon as you can get your thoughts together. I'm sure you have a million questions, but without knowing more about your current dx, I don't want to flood you with other thoughts. But please feel free to PM me if you'd like to discuss anything.

Best wishes,
Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

Dad's Girl
Posts: 1
Joined: Fri Jul 14, 2017 10:01 pm

Re: I need a little hope

Postby Dad's Girl » Fri Jul 14, 2017 10:14 pm

Here to give you hope! My Dad was diagnosed with stage 4 colon cancer with liver mets. He had a colon resection and 7 chemo treatments with Foflox and avastin, the plan was to freeze the liver spots under direct ultrasound guidance but when they went to do this the tumors were no longer visible. He never completed the 12 rounds of planned of chemo due to significant side effects, he had one more direct ultrasound on the liver just to be sure and CT scans every 3 months and remains NED for almost 2 years now. He recently graduated to every 6 months scans and getting port out. There is hope! Miracles do happen! Find a good surgeon and cancer team. We were at Karmanos Cancer Institute in Michigan.

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: I need a little hope

Postby Lee » Fri Jul 14, 2017 10:57 pm

Dad's Girl wrote:Here to give you hope! My Dad was diagnosed with stage 4 colon cancer with liver mets. He had a colon resection and 7 chemo treatments with Foflox and avastin, the plan was to freeze the liver spots under direct ultrasound guidance but when they went to do this the tumors were no longer visible. He never completed the 12 rounds of planned of chemo due to significant side effects, he had one more direct ultrasound on the liver just to be sure and CT scans every 3 months and remains NED for almost 2 years now. He recently graduated to every 6 months scans and getting port out. There is hope! Miracles do happen! Find a good surgeon and cancer team. We were at Karmanos Cancer Institute in Michigan.


Welcome to our forum Dad's Girl. Thank you for your post. Sounds like your Dad has had good result with chemo. Feel free to hang around.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: I need a little hope

Postby LPL » Sat Jul 15, 2017 5:14 am

Hi and Welcome pdp497,

I wish you didn't have to experience this but know that this forum has a Lot of kind clever people who can support, advice & share what has helped them. I have learned So much from reading/taking part here.

This below is good advice I think.
If you put your information in your signature people with similar diagnos can see a summary of your situation and share experience.
Also creating the signature members here have made me aware of things to know about my husband's case. Here is a link to advice how to create a signature
https://coloncancersupport.colonclub.co ... 97#p421597

Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

User avatar
betsydoglover
Posts: 879
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: I need a little hope

Postby betsydoglover » Sat Jul 15, 2017 7:37 am

There is hope. I have a story similar to dadsgirl. I was diagnosed state 4 with liver met. After 2 treatments of Xeloda/oxaliplatin/Avastin, my scans were clean - we continued with the remaining 4 rounds of chemo. I did have a lung met show up 2 years later which was surgically removed. My diagnosis was in May 2005. Here I am 12+ years later with still no sign of cancer.

It's true that hearing you are stage 4 is a very scary thing. I hope hearing about all these happy outcomes will give you hope and a fighting spirit.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Sat Jul 15, 2017 8:31 am

Thank you everyone for your kind words and support. I still do not have all the details from my biopsy the preliminary result was just that it was colon cancer. The surgeon said there isnnonpointnin removing the tumor in my colon because of the liver involvement. My wife and I are in the process of setting up an appointment at mMD Anderson as soon as possible for a second opinion.

I woke up today the day after Dx feeling quite down and you all have lifted my spirits I can't thank you enough.
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)
MSS
KRAS
8/4 CEA 240

stu
Posts: 603
Joined: Sat Aug 17, 2013 5:46 pm

Re: I need a little hope

Postby stu » Sat Jul 15, 2017 8:53 am

Hi ,
Hope to encourage you . Just taking my mum on a cruise eight years after a stage 4 diagnosis. My signature tells the story . She is still living a good life and regular scans have helped stay ahead of the game.
Wishing you strength and very successful treatment.
Kind regards,
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

User avatar
Bev G
Posts: 5847
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: I need a little hope

Postby Bev G » Sat Jul 15, 2017 2:50 pm

Hello and welcome to the forum. I know you are probably really feeling overwhelmed right now, butt once you get a plan, you will probably feel better/safer. When I first joined the forum almost 8 years ago, the outlook for my survival was extremely poor. I made it through all the chemos/surgeries and have had no evidence of cancer since my liver met was removed in 4/10. All of us understand how terrifying things are right after diagnosis. The very best thing I think yu can do right now is to get to a major NCI certified cancer center, and set out to get to liver resection. That is not always possible for everyone with stage IV disease, butt when it is, liver resection is done with curative intent!

Best wishes to you. Please come back if you have new questions.

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

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: I need a little hope

Postby Maia » Sat Jul 15, 2017 3:11 pm

pdp497, you have every reason to be hopeful. New treatments for metastatic colon cancer are coming out as we speak. The standard of care changes in terms of months, by now. So, be careful with what you read online, even in this forum, because it might be outdated!!
Going to MD Anderson for a consult is a good decision. Are you located near it?
Best wishes to you!

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Sat Jul 15, 2017 4:43 pm

Hi Maia. I live in Austin so the trip to Houston isn't bad I feel lucky to be so close to one of the top centers. I am hopeful that one day a liver resection will be possible but was very discouraged by the local doctor that performed my biopsy. He basically said there was no point in surgery on the colon tumor or liver. I am hoping MD Anderson will have a different option or at least after chemo that resection might be possible.
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)
MSS
KRAS
8/4 CEA 240

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: I need a little hope

Postby Maia » Sat Jul 15, 2017 9:16 pm

pdp497 , I'm so glad to hear that. You'll have many options at MD Anderson. If you are willing to, you also could participate there right away in some clinical trial based on immunotherapy, instead of chemotherapy --IF resection wouldn't be possible, something that I doubt. You also have great immuno trials in San Antonio --again, IF needed.
The only thing that you could be a bit proactive is getting sure you have basic genetic testing done in the biopsed sample --or that you have access to that material to send to MD Anderson, when they ask for it : )

User avatar
WriterGirl1969
Posts: 453
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: I need a little hope

Postby WriterGirl1969 » Sat Jul 15, 2017 11:29 pm

pdp497 wrote:I am hopeful that one day a liver resection will be possible but was very discouraged by the local doctor that performed my biopsy. He basically said there was no point in surgery on the colon tumor or liver.


SO glad you are getting another opinion. If you want to check out what hope is like where liver involvement and surgery is concerned, do a search for some of the posts regarding a member by the name of "beansmama." As of last fall she had literally had all sorts of treatments thrown at her, and was given 3 completely crappy options. Now, less than a year later and with a new treatment based on her specific genetic markers, her tumor has shrunk to the point where not only is surgery possible, it's a much safer surgery than she originally had any hope of receiving.

The one thing I've seen from the people and posts here is that there is *always* hope. It can be very hard to see sometimes, but there are options, and new treatments, and no doctor should be telling you there's "no point" in anything! Get a different doctor! :)

Hugs and Prayers - and let us know how 2nd opinion goes!
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: I need a little hope

Postby Volfan » Sun Jul 16, 2017 9:53 am

I was where you are in March. Diagnosed with stage 4 rectal cancer with 2 liver mets. The first month running around seeing doctors and starting chemo and the total unknown sucks beyond any description. But once you and your wife start to get answers and you get into a routine with chemo and knowing when your good days and bad days are it does improve greatly on how you feel emotionally.
The biggest thing I can tell you is find a doctor that you believe and have confidence in.
Will have to say one of the cool things about chemo is they told me not to be in the sun. So my wife finally approved me hiring someone to do our yard work. For me that's a win.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: kal74 and 32 guests