Omentum seeding or Drop metastasis

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Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Omentum seeding or Drop metastasis

Postby Robino1 » Sun Oct 08, 2017 2:41 pm

I have to give a HUGE shout out to O Stoma Mia for reaching out to me. Thank you so very much.

I have been searching for anything or anyone that is even remotely like what I have been told I have. Seeding in the omentum probably happened when I had my resection.

O Stoma remembered a member of the Colon Club had Drop Metastasis which sounded very similar to my description of my colon cancer in my introduction thread.

It sounds like it is the same

I've been reading here and trying to gather info on the best hospitals, CEA numbers, KRAS and all those other things that I'm still clueless on when it comes to my own disease. I've been pushing for those tests and I'm not happy with the direction that my oncologist wants to take after I'm 'through' with this current course of treatment. She is talking about chemo for life. This I discovered on this last appointment I had with her.

I saw the smallest roll of eyes when I mentioned HIPEC and she basically blew it off. At that point I decided that I NEED a second (actually it will be a third) opinion. My loving daughter-in-law is a nurse practitioner for a gastro doc. She took my first intital CT scan to a cancer doctor in her group and he charted for her the steps he would take for my case. My oncologist at first agreed that these were the same but she (now that I think back on it) totally glossed over the HIPEC suggestion.

So I went back to different threads to find that list that was generously supplied by another member here. I would love to go to MSK but realistically, that is not an option. I decided on Penn Presbyterian Hospital and have made an appointment for November 21. We will be in the area over Thanksgiving and that is a better fit for me as we were from the area and have family and friends available should I need them.

I will continue my chemo with my current doctor but am arranging for copies of everything the doctor in Philly needs.

The doctor I have an appointment scheduled with in Philly is Dr. Nevena Damjanov. I truly feel that HIPEC is probably my best chance of beating my particular cancer. I hope she agrees or maybe has another direction.

The first time I felt depressed and not feeling like I got this and I will beat it is after my last talk with the onc

Not acceptable. I'm back in fighting spirit.

Miss Julie YW if you read this, thank you for writing that blog. You are my inspiration and for the first time it feels like I finally found someone that has gone through what I am going through or will go through.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Omentum seeding or Drop metastasis

Postby Lee » Sun Oct 08, 2017 3:43 pm

Robino1 wrote:

I saw the smallest roll of eyes when I mentioned HIPEC and she basically blew it off. At that point I decided that I NEED a second (actually it will be a third) opinion. My loving daughter-in-law is a nurse practitioner for a gastro doc. She took my first intital CT scan to a cancer doctor in her group and he charted for her the steps he would take for my case. My oncologist at first agreed that these were the same but she (now that I think back on it) totally glossed over the HIPEC suggestion.


I'm sorry, I don't have a lot to offer, butt regarding HIPEC, get an opinion from the surgeon, not the Onc. The surgeon is the expert regarding surgery, the Onc should be the expert regarding chemotherapy.

Glad to hear you are getting opinions, that would be my best advice.

So sorry you are having to deal with this. Hope you find a path to NEDville,

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
Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Omentum seeding or Drop metastasis

Postby Robino1 » Sun Oct 08, 2017 5:51 pm

Can the oncologist suggest a surgeon?

God I am so lost in this maze. :|
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Omentum seeding or Drop metastasis

Postby Lee » Sun Oct 08, 2017 6:14 pm

Robino1 wrote:Can the oncologist suggest a surgeon?

God I am so lost in this maze. :|


I did not go down this path, thus I'm not a lot of help. Butt what I can offer this, check out major cancer treatments centers or cancer hospitals. I do know that many people on this board have reached NED thanks to the HIPEC procedure.

Maybe start a new thread asking for hospitals or surgeons that do the HIPEC procedure. Thanks to Dr Kemeny and MSK, the HIPEC procedure is gaining ground. More hospitals do offer it now verse a few years back.

I know, this journey can be so CHALLENGING at times. Really you have to be your own advocate, butt mostly you have to an expert or learn pretty fast. That's why this forum is so HELPFUL. The newbies learning from those that have already walked in your shoes. And have some WONDERFUL insight to offer.

Remember, one day at a time, one bite out of the mountain at a time.

You will make it,

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!

Writingdoc2
Posts: 4
Joined: Mon Jul 25, 2016 8:41 pm

Re: Omentum seeding or Drop metastasis

Postby Writingdoc2 » Sun Oct 08, 2017 10:27 pm

Hi Robin,

I agree with Lee that it's often necessary to interview surgeons rather than oncs when it comes to HIPEC. If you're located in Pennsylvania, I would recommend talking to Dr. Bartlett. He is an experienced HIPEC surgeon and it appears he offers free phone consultations which is wonderful.

https://hipectreatment.com/profile/dr-david-bartlett/

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Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Omentum seeding or Drop metastasis

Postby Robino1 » Mon Oct 09, 2017 6:44 am

Writingdoc2 wrote:Hi Robin,

I agree with Lee that it's often necessary to interview surgeons rather than oncs when it comes to HIPEC. If you're located in Pennsylvania, I would recommend talking to Dr. Bartlett. He is an experienced HIPEC surgeon and it appears he offers free phone consultations which is wonderful.

https://hipectreatment.com/profile/dr-david-bartlett/


I actually live in Florida but we used to live in the Philadelphia, PA area. I will check out that doctor.

Last night I spent a few hours reading Julie's blog. It is breaking my heart.

I'm going to do more research. As of this moment, I'm not finding very many cases where there's a great outcome.
At least at this moment in time, I Do have options to consider. I intend to go over them thoroughly
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Omentum seeding or Drop metastasis

Postby DarknessEmbraced » Mon Oct 09, 2017 9:53 am

I hope your appointment on November 21st goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17


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