What do you think?

[brokenwings]

Hi everybody.

I've been doing pretty bad lately; as some of you already know my CRS/HIPEC surgery that was scheduled for 04/29 was "aborted" because my scans didn't show all of the disease and my surgeon... you know CRS/HIPEC, you have to get it ALL out if you aim for long term survival. So, my surgeon was not sure he could remove all of the nodules. Besides, he didn't feel like removing all of my colon because that's where my mets are: all over my colon...
So he just removed a suspicious ovarian mass and enrolled me in a clinical trial. I'm getting intraperitoneal+ systemic chemo (IP Oxaliplatin + IV Folfiri Avastin).

I don't trust chemo at all, I keep thinking that if chemo actually worked nobody would die of cancer (colon or other kind...).

I had 6 cycles of Folfirinox before my aborted surgery, my CEA went from 8 to 6, the visible lesions on my peritoneum shrunk and SUV went down. Radiologists said I had partial response but they weren't able to see all the mets on my colon, unfortunately this happens often with peri mets.

So I've been feeling pretty bad... my scans are in two weeks and... I'm feeling down.

Any words of support are welcome...

Hugs.

[AmyG]

It's doing something, right? So that's better than nothing. I know that's super easy for me to say after all the good news I've had.

I wish I could give you a hug and we could both tell cancer to go eat a bag of dicks. So instead I'll tell you a joke my 9 year old told me last night.

What do you call a cow with no legs? GROUND BEEF!!!

I hope you can get some better answers after your scan.

[brokenwings]

Hi Amy,

Thank you for caring.

Big hugs.

Paola

[Rock_Robster]

Hi brokenwings,

Sorry to hear mate. Have you looked into PIPAC at all? I gather it’s still fairly new/experimental but have heard of good early results in patients who weren’t candidates for HIPEC.

Cheers, Rob

[lovelife789]

Hi Paola,

Just to give you some encouragement on the chemo bit.

I trust chemo works to a certain extent, and I used to work for a pharmaceutical player. That says a lot. But when I say I trust, I mean it from my own experience.

I was originally not a candidate for surgery because of the tumor bulk I had. I had 5 fat tumors in my liver. With just 5 cycles of FOLFOX + erbitux, I was able to shrink them ALL by half. And I got to NED in 6 months. And i stayed chemo free for 18 months after.

Yes I have a bad recurrence now but I think stress plays a strong role on this .... Not the chemo not working or what not.

But at the same time, I really believe chemo has its limitation, positive attitude also plays a big part. Like when I was getting folfox, I was very happy, I welcome chemo to beat the crap out of those cancer cells.

I have also reframed my mindset dealing with my recurrence... Even if the 5 year survival rate for stage 4 is only 6%, there's no reason I'm not that 6%!!

Have hope!!!

[claudine]

I am really sorry that you're going through this rough patch, Brokenwings. What a roller coaster ride this effin' disease is... I understand your disappointment, but hopefully it's just a temporary setback? The chemo appears to be working - in the sense that your tumors are shrinking. We're in the same boat with my husband; at this point, I'm happy with a "no further growth" status. I'm hopeful that new treatments are being sought, and in the meantime, it's nasty chemo - not ideal but not too many alternatives, unfortunately... Hang in there XXXXX
Claudine

[AmyG]

How are you feeling today?

[LPL]

Hi Paola,
Sorry you are feeling low.
And I can not help because I have no experience/knowledge about these special treatment so I can only cross my fingers & toes and wish you the best of luck with the procedures & tests.

But maybe I can distract you a little from thinking about upcoming scans by talking about a word in your signature.
We are both in France and I wonder if this is why my husband’s adenocarcenoma was called the same as yours -
”Lieberkulien adenocarcenoma”. I’ve never seen it mentioned elsewhere. When we got husband’s pathology report I searched for hours (without success) trying to find if that was a special form of adenocarcinoma?
Then I read that:
”The colon is organized into four histologically distinct layers. The epithelial layer, at the luminal surface, consists of a single sheet of columnar epithelial cells folded into fingerlike invaginations that are supported by the lamina propria to form the functional unit of the intestine, called crypts of Lieberkühn“
https://www.researchgate.net/profile/Lo ... ion_detail
”Crypts of Lieberkuhn - straight tubular glands that extend through the full thickness of the mucosa.”
http://wwwmgs.bionet.nsc.ru/mgs/gnw/trr ... large.html

Do you know why they wrote your diagnose like that?
Have you found an explanation to why they called yours Lieberkulien adenocarcinoma? Is it a special type?
For some reason, I decided to not include Lieberkuhn in my signature. (At the time I think I thought it was just a description of where it was found? or had started?).

[brokenwings]

Dear friends,

As my psychological state keeps deteriorating, I've been put on an antidepressant.

I hope I'll be feeling better the next days and I'll be able to answer your questions.

Right now I'm going through my 4th round of chemo...

Scan + laparoscopy next week...

Hugs to all of you.

Paola

[brokenwings]

P.S.: thank you so much for your support.

[LPL]

Hugs to you Paola,
Please rest & regain strength.
Thinking about you!

[Green Tea]

I'm sorry to hear that you're feeling so down. I think I can understand given the situation, and now especially since there is a severe heat wave both in Paris and in Lyon, just when you have to show up for your chemo sessions. (I sure hope that they have good air-con in the Infusion Centre)

I was wondering if you have already run across these particular resources in the Lyon area. Maybe you could check them out while you're there to see if any of them might be relevant for you.

• Centre for Rare Tumors of the Peritoneum - Lyon, France
  http://www.renape-online.fr/ Main website
  
  http://www.renape-online.fr/fr/centres/rhone-alpes.html Contact info for Lyon office
  
  Difficult-to-treat peritoneal tumours
  http://www.renape-online.fr/fr/tumeurs-peritoine/
  http://www.renape-online.fr/fr/tumeurs-peritoine/carcinome-sereux-primitif-peritoine-tumeurs-rares.html
  .
• The League against Cancer - Lyon, France
  
  Cancer support groups in the Lyon area
  https://www.ligue-cancer.net/article/33466_groupes-de-paroles-pour-les-malades
  
  Individual cancer counseling in the Lyon area
  https://www.ligue-cancer.net/article/33465_consultation-avec-un-psychologue
  
  Afternoon group activities for cancer patients in the Lyon area
  https://www.ligue-cancer.net/article/34807_un-apres-midi-ailleurs

[mslaurie]

Hi Paula,

Keep you chin up! My husband as you know is pretty much in the same EXACT situation as you are. He does not have many options eitehr in fact so far just pallative chemo. Yes the peri mets are hard to get control of.

I'm not sure why more surgeons do not offer to have most the colon removed. I mean if the peri mets are all on the outside of of your colon why not get rid of the colon (before it gets blocked due to the peri mets) and get a j-pouch. Blockage of the colon is the biggest concern and cause of death when peri-mets are involved So get rid of the colon!

This stage iV colon cancer survivor with peri mets had surgery to remove most his colon and had a j-pouch placed then chemo to battle the peri mets and he has been NED for years now and no longer even does chemo.

https://www.mdanderson.org/publications ... 63978.html

I don't know why surgeries like this are not offered to patients who have peritoneal metastasis. I mean it should really be the patients choice if they want to attempt a surgery such as having most of their colon removed and a j-pouch put in place or something similar. I know for a fact if it was offered to my husband he would jump at the chance to have most his colon removed. Sure I the perim-ets could possibly spread to other parts of the body, but if they do it would take some time for the tumors to grow big enough to caused issues with the other organs and even then one would think either chemo or cyber knife them off when they get big enough to cause issued. It could take a few years for the tumors to even grow big enough to cause problems if at all in the other organs.

HIPEC and cytoreductive surgery is MAJOR surgery (more so then having your colon removed) and not all that effective for long term NED either from what I have researched.

I have also read online during some of my research where some have survived many years and still are alive by only having chemo as a maintenance. Treating the peri mets like a chronic illness.. if one can keep the mets at bay I do not see why one could not live many years.

Like I said we are in the same situation as you are.. almost to a "T". Yes its depressing, its terrible as a matter of fact. We also wish there was more options given to the patient. Let them (the patient) decide if they want to risk what surgery for the possibility of some more months (a quality life) or years to live even if it means a possibility of the surgery not working or not surviving the surgery. It should be up to the patient what they want to risk or not risk!

Just my 2 cents from someone going through the same thing as you are...

Hugs,
Laurie

[brokenwings]

Hi brokenwings,

Sorry to hear mate. Have you looked into PIPAC at all? I gather it’s still fairly new/experimental but have heard of good early results in patients who weren’t candidates for HIPEC.

Cheers, Rob

Hi, Rob.

Thank you for your message.
PIPAC has been approved in France in 2016. I spoke to my doctors about it but they think IP chemo is more aggressive than PIPAC. They still hope to get me to "resectable" this way...

[brokenwings]

How are you feeling today?

Hi Amy,

I'm doing a bit better now, thanks.