Stage 4 Colon Cancer

Please feel free to read, share your thoughts, your stories and connect with others!
Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Thu Aug 09, 2018 9:24 am

Dear all,

I have some urgent questions:

1> If I have around 5 liver mets < 1cm, which cannot be resectable because they are located in the both side of liver, is it possible to use RFA to treat it ? I read some soure which indicated that RFA only use if I have <=4 liver mets ? Without RFA, what treatment I can choose ? My doctor said even using RFA, my living period is around 3 years on the average. Is it true ?

2> I got 2 different advice from doctors. One said RFA is the best options, the other said He can use TACE to treat the mets ? What is the best option for me now ? Pls give me your experience
Last edited by Jimt on Thu Aug 09, 2018 10:04 am, edited 1 time in total.

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Thu Aug 09, 2018 9:48 am

My big disadvantage is that the liver mets are located in both sides of my liver so they are not resected. Is it possible to use chemo to reduce the mets to the level where they can be resected ?

martd
Posts: 57
Joined: Tue Nov 21, 2017 3:48 pm

Re: Stage 4 Colon Cancer

Postby martd » Thu Aug 09, 2018 10:32 am

I had 17 liver Mets, 3 in the left side and 14 in the right. I had surgery after a major response from chemo. Without a good response from chemo they would not have done surgery. The way I understand it is they didn't want to put me through surgery if the chemo didn't kill the cancer because it would just grow back. They're not necessarily trying to make the Mets smaller they are trying to kill the cancer cells.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 Colon Cancer

Postby boxhill » Thu Aug 09, 2018 8:09 pm

Jimt,

Where are you located? Can you get to MSK in NYC? Many people swear by Dr. Nancy Kemeny for treatment of liver mets, including situations where other doctors have given up.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Thu Aug 09, 2018 9:53 pm

I live in Asia. I already read about HAI pump at MSK but not sure It is applied in Singapore or Japan. I am able to travel to MSK but my questions is :

1> Can you give me the contact/email of MSK so I can send them my medical report before make an apointment ?

2> Without Insurance, How much does it cost to treat my colon cancer? My friends told me the cost of treatment in Us is 10 times bigger than that in Singapore

3> Is it easy to make appointment or surgery at MSK ?

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Thu Aug 09, 2018 10:31 pm

I fell desperated and hopeless. I read many stories hear and found that most of Stage IV patients can prolong their living with liver resects. Without liver resects, I will die soon :(

stu
Posts: 879
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 Colon Cancer

Postby stu » Fri Aug 10, 2018 1:36 am

Hi ,
Firstly Jim I am unsure exactly how many liver mets you have ? My mum has had over ten and one alone was over five cm . Having chemo first was a good plan as it allowed her to get better margins for surgery. If all your five mets are under 1 cm you need to find out if you have some surgical options too . My mum had tumours from segment 4 through to 8 but was clear from segments one to three .
I live in the UK and we don’t have the pump here either . But with chemo and surgery alone my mum has been alive for nine years as a stage 4 patient .
Put up a post asking for the names of good liver surgeons in America including including Dr K and consult with a few to see what your options are . You can do that at the same time . I hear what you are saying about costing in America but once you know if you have treatment options you could try Europe .
Have a look at the Proton treatment thread . It’s the first I have read about that . Some surgeons from what I read use Surgery and Radio Frequency Ablation .
Consult with other oncologists to see if you have Lynch syndrome and would benefit from immunotherapy.
You are not a stat and your treatment is in medical hands but they can’t predict your lifespan .
Try and take one step at a time and form a plan of action . Get friends and family to help so you are not on your own . We are here to help in any way we can .
Take care,
Court
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 .

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Fri Aug 10, 2018 3:54 am

Hi Stu,

I have 5 mets (all < 1cm) which are located in the both side of my liver. My doctors and surgeons said they are inoperable Due to the location, they cannot resect the mets,... The only way to treat them is to use chemo or RFA.

My problem is not related to the size of the mets but link to location of them in the liver. I will die if they resect the mets

I feel hopeless because chemo can shrink the turmour to the level they can operable but that not my case.

Do anyone have the experience with my case ? Plz give me some suggestions

Jannine
Posts: 77
Joined: Wed Jun 20, 2018 7:46 am

Re: Stage 4 Colon Cancer

Postby Jannine » Fri Aug 10, 2018 6:40 am

Jimt, I haven't been in your position but I would suggest contacting MSK and your local hospital and talking to them about arranging transfer of your records. It sounds like often a hospital like MSK will work out what treatment the patient should have, relay that to your local hospital so they'll know how to treat you, and then you would go to MSK for surgery and other important milestones, but would mostly be treated close to home according to the plan that MSK has determined is best for you. Mostly people have talked about this approach being taken all within the same country, but I don't see why it couldn't be done in your situation as well.

I'm sure others have experience with this sort of arrangement and can speak up as well. You should check in with your local oncologist and find out if they've worked with big cancer centers abroad in this way for other patients like you, and what sorts of treatment they have worked out.

I hope you're able to work this out! I think you need to ask a lot of questions and get seen at MSK to find out what you need, and then figure out how you can make it happen. One step at a time.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Gravelyguy
Posts: 61
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage 4 Colon Cancer

Postby Gravelyguy » Fri Aug 10, 2018 7:29 am

Hi Jim,

Don’t give up hope. With my liver Mets one of the tumors was dead when they resected it. The other was in very deep but small so instead of cutting it out, which they could have, but it would have meant a lot of my liver gone just to get a tiny tumor, they used RFA. Nearly a year later and no sign of cancer. My surgeon at Mayo said that RFA can be nearly as effective as resection.

I would search out the most experienced liver surgeon you can find and have them take a look.


Hang in there,

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Fri Aug 10, 2018 11:20 am

Thanks all,

After researching on the American society website, I know my treatment is classified as embolization:
https://www.cancer.org/cancer/colon-rec ... ation.html

It is another option, besides radiofrequency ablation (rfa). I understand that my liver mets cannot be removed by the surgery.

Are the RFA or Embolization can destroy the mets ? Or they only to control it prolong my living ?

Does we have survivors with the treatment or the status like me ?

hiker
Posts: 76
Joined: Thu Aug 09, 2018 10:15 am

Re: Stage 4 Colon Cancer

Postby hiker » Fri Aug 10, 2018 12:17 pm

Hey Jimt,

Take a deep breath. You are still in the early stages of this process so don't give up hope. It can be frustrating and I wanted to give up plenty of times, but don't. As others have stated, a major cancer center may provide you with a different treatment plan - especially a center that offers the HAI pump. There are a few, MSK being the one where I am treated. Even if the liver mets cannot currently be removed, the oncologist may be able to use the pump to shrink the tumors so they can be removed or maybe even eliminate them.

My situation is different from yours in that my tumors were able to be removed right away. However, it took hearing I was going to die from at least 4 different doctors before I went to MSK. And at my very first meeting with the oncologist and surgeon I heard the word "cure" for the first time.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

martd
Posts: 57
Joined: Tue Nov 21, 2017 3:48 pm

Re: Stage 4 Colon Cancer

Postby martd » Fri Aug 10, 2018 1:10 pm

I'm not sure exactly what embolization you are speaking of but my two stage liver resection involved a right portal vein embolization surgery in between liver resections. The way it worked was first they resected the left side Mets then the embolization surgery blocks the blood flow to the right side of the liver, diverting all the blood to the left that allows the left to grow large enough to allow the resection of the right side of the liver. Going to MSK was very good advice and sounds like you have the means to get there. Go to their website and look for their phone number, all it takes is a phone call and they take over from there. Good luck to you, hope all goes well
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

Jimt
Posts: 12
Joined: Sun Aug 05, 2018 5:05 am

Re: Stage 4 Colon Cancer

Postby Jimt » Fri Aug 10, 2018 7:28 pm

thanks martd and hiker,

How can I contact to MSK ? Could both of you give me some contacts ? I am living in a Asia country, so it would be better if i can discuss through email at first step

martd
Posts: 57
Joined: Tue Nov 21, 2017 3:48 pm

Re: Stage 4 Colon Cancer

Postby martd » Fri Aug 10, 2018 11:50 pm

I could not find an email address but here is the website for the hospital

https://www.mskcc.org

On the front page click the drop down for request an appointment online, then select new patient, then select International patient and follow the directions there.

Good luck, I hope this info works for you
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7


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



Who is online

Users browsing this forum: Google [Bot], Karen1967, Majestic-12 [Bot] and 43 guests