O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

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bitchslapped
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Location: PNW/USA

O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby bitchslapped » Wed Oct 11, 2017 9:10 pm

Hi Folks, This is kind of a continuation of my "They Say Things Come In Three's" thread for those of you that tuned in for that one. Well, there's more.

This is about my BFF in the whole wide world, 52 years of friendship (are we that old, or were we that young?). I guess it's both. Friends since 7th grade when she was new to the school. She tells me I was the first person that was nice to her which still warms my heart. Anyway, in the other thread I mentioned her DH had a cardiac "event" on the freeway offramp in June of which he luckily survived. These two carried me through the anguish of caring for my mother & DH.

BFF had laparoscopic removal of cancerous appendix yesterday, mets to peritoneum, "carcinomatosis of peritonei". Pathology w/b about a week out. Shock is an understatement @ this point for me & her DH. She already knew a week ago in her heart of hearts.
She has been going from dr to dr, test after test the last couple of months, bloodwork (CEA normal), CT scans showed couple of small lesions in peritoneum, PET scan showed nothing. One doc, the last one who did the surgery noticed "something" re: appendix. She's had 2 CT's in 2.5 months, ultrasounds, gynecological surgical oncologist, gastro doc, ER doc, her PCP doc, another surgeon, etc.

I believe we have/had some members w/appendix cancer or anyone familiar = I am interested in hearing your story, thus the reason for a separate thread. Appendiceal cancer very rare; less than 1000 cases per year in the USA.
HIPEC is cautiously on the table for consideration.

There's not a lot out there on this cancer. Don't know if immunotherapies/targeted therapy, newer drugs are available or in the works; then one needs to consider clinical trials these days too.

BFF will self advocate & researching the internet w/me as cohort, yet she is very much concerned, aware how her DH is handling this.

From what I'm reading so far, it appears that b/c not too much known on this type of cancer that colon cancer therapies are followed...maybe.

I've got some homework to do, but this forum is my "go to" place @ times & I'm thankful for that & my friends here on CT.


BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Canada777
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Joined: Mon Mar 28, 2016 6:24 pm

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Canada777 » Wed Oct 11, 2017 10:34 pm

Hi - so sorry to hear about your friend. My partner has appendix cancer with peritoneal mets. He did HIPEC. At first they thought it was colon cancer...only during surgery did they realize it was likely from appendix. Later testing proved that assumption correct. We've been told that because not much research is done on appendix cancer (quite rare) they treat it as they would a colon cancer. There are a few research studies I found...but that's it. He was told his cancer is "appendix adenocarcinoma " . He started with FOLFOX and now he's onto FOLFIRI. If you manage to find any new information let me know!
BF dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI starting Sept 2017.

Brearmstrong
Posts: 25
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Brearmstrong » Thu Oct 12, 2017 6:56 am

So sorry to hear of your BFF's diagnoses... heavy heart here... I too have appendix cancer (mucinous adenocarcinoma) and the tumor started in my appendix and invaded into the colon wall. You can see the rest in my signature. Because mucin or peritoneal mets weren't yet found during surgery or after biospies of my omentum, HIPEC wasn't on the table for now. Yes, you are correct that when it hasn't turned into PMP (which is sounds like it already has for your BFF) than it is treated like colon cancer and 12 rounds of folfox or equivalent is usually the first step in trying to beat it. It sounds to me (i am not a dr) that they should really be pushing for HIPEC and debulking. I'm not sure where you are located but there are great drs in Baltimore (Dr Sardi) and Pittsburge (Dr. Barlett) and a team at MSKK. MD Anderson in Texas is also on the fore front of treating appendix cancer. I am not being seen by any of these drs currently but follow their work and success stories. IF mine spreads than I will go to MSKK for treatment as currently I must stay within my insurance network which keeps me at Yale Cancer Center (which is wonderful and I have nothing but great things to say about my surgeon and oncologist) but I will fight to get to MSKK if I need to in the future (let's hope I stay in Nedville FOREVER). I wish you both the best and happy to give you more information if needed. I must admit that I've heard hundred of case studies and have done WAY too much research on appendix cancer.
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck
FOLFOX April-sept 2017 but reduced both agents after round 2, crashing WBC even with nuelasta shots. Clean CT scan July 2017 watching one small lung nodule
CT scan October 16 trying to wrap my head around life after chemo

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peanut_8
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Location: Capital of Texas

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby peanut_8 » Thu Oct 12, 2017 10:45 am

Really sorry to hear about your friend BS. She's lucky to have you as her friend, just as much as you're lucky to have her. Does anyone do HIPEC close to you?

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Maia
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Maia » Thu Oct 12, 2017 8:04 pm

BS, so sorry to hear about your dear friend. Where --area/state-- is she treated? Is she able/ willing to travel for treatment?

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CRguy
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Joined: Sun Feb 10, 2008 6:00 pm

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby CRguy » Thu Oct 12, 2017 9:59 pm

Hey BS
I am with peanut and Maia in sending good mojo to your BFF and
sorry that is the sitrep ...... but no experience to share with you.

Keep us in the loop
WE are ALL ONE here and your many homies will be here to have your back
and get you some good info for your friend.

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

bitchslapped
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Location: PNW/USA

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby bitchslapped » Sat Oct 14, 2017 4:06 pm

Thanks guys for your stories, support.
Her location is Portland, OR area = OHSU (Oregon Health Sciences University) which is a designated NCI comprehensive cancer center, however some locals liken the in-hospital after-care to that of a VA hospital. HIPEC is in its infancy there, only 4 yrs. She is willing to travel, however insurance networks are always a problem state to state in the USA. If tx is available within 50 miles of your home, then that's where you go unless she decides to go out of network or challenge it.

She's healthy aside from this, yet asks herself if @ 64 is she up to this (HIPEC) + what else? QOL important to her.

I am getting crosseyed from all the reading. Here's the bottom line:

Medical Establishment, Research all the way through Pathology confused about dx of the multitude of appendix cancer cell biologies (I'll put it that way) = pick a grade, pick a tx! Uniformity = 0. Somewhere I read new grading guidelines published "who knows where" this Sept......I guess b/c this is a rare cancer, some using 2 stages, some using 3 to stage...some combining well-differentiated w/moderately differentiated, some combining moderately-differentiated w/poorly differentiated :shock:
When she receives path report, my recommendation to HER is to ask her doc about 2nd path opinion, especially if done @ an independent lab, as per the below article, preferably @ a teaching institution.
For those of you interested:
https://health.ucsd.edu/news/releases/P ... nosis.aspx

It took 2 months to get a dx, test after test, doc after doc. Nobody saw something on her appendix except the liver/pancreatic surgeon. Not the 2 gastro docs, 1st surgeon, not even the surgical gynecological oncologist who has accepted a professorship or assistant professorship (not sure) @ University California, Davis (UC Davis!). He did tell her he thought she had something else going on (gastro doc did dx gastritis, so he was correct), but he did not think she had cancer. He recommended she have another CT in 6 mos & if she did need surgery to go to a liver surgeon as one of the lesions was in close proximity to the liver. So that was good advice, but waiting 6 months = not so good.

I found these links which may be helpful for some of our appendix patients:
https://www.uptodate.com/contents/cance ... -peritonei
https://acpmp.org/about-acpmp

This Inspire Community thread helpful in aftercare to HIPEC, though nobody tells the whole truth, nothing but the truth:

https://www.inspire.com/groups/appendix ... ga=freshen


BS
Last edited by bitchslapped on Sun Oct 15, 2017 12:26 pm, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

DarknessEmbraced
Posts: 2785
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby DarknessEmbraced » Sat Oct 14, 2017 5:34 pm

I'm so sorry about your friend's diagnosis!*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

zx10guy
Posts: 137
Joined: Mon Jan 07, 2013 12:54 pm

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby zx10guy » Mon Oct 16, 2017 12:52 am

Appendiceal cancer is a very sinister disease. I won again with the cancer lottery when I was diagnosed with appendiceal cancer as my second primary last year. I had a clear CT just before seeing my oncologist for a routine 3 month checkup. My blood work was done during this visit and we discussed when he was going to cut me loose from being monitored from my first primary of stage 3b colon cancer. I got the results of my CEA test and it was way elevated...almost to the levels I had when I was first diagnosed. A retest confirmed the elevation. A PET was ordered which showed nothing. Later the PET images were reviewed again by the radiologist my CRC surgeon uses. Both said the hot spot I saw on the scan image was not cancer. But it coincidentally it was near where my appendix would be. The last tool I had was a colonoscopy. I was due anyways. During the colonoscopy, my GI just happened to see the polyp in the appendiceal opening when my colon had shifted. It was a chance thing for my GI doc to be looking at that location to see the polyp pop out. Biopsies done showed high grade dysplasia. Surgery was done (right hemicolectomy). Pathology comes back and confirms I have appendiceal cancer. Stage 0 in situ. So we happened to just catch it before it had the chance to take off.

My GI doc was telling me about a doctor he knows who was also diagnosed with appendiceal cancer. In this situation, everyone thought he had appendicitis. They realized during surgery it was not appendicitis. Pathology comes back and he's stage 3.

Sometimes I wonder if it should be SOP that when they're in your abdomen doing laparoscopic surgery to just also remove the appendix. If they had done this when I was first diagnosed, I wouldn't have had to deal with the headaches of last year.

alphagam
Posts: 202
Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby alphagam » Mon Oct 16, 2017 2:57 pm

Not cancer but spent most of a year talking to Drs about abdominal issues including pain, but not extreme pain. Finally, a surgeon ordered an ultrasound and scheduled gallbladder removal AND an appendectomy. Not only was my gallbladder toast, but path showed I had acute appendicitis! So thankful surgeon removed both!!!!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years


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