HIPEC - MY BFF W/Appendix Cancer

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rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: HIPEC - MY BFF W/Appendix Cancer

Postby rachel2017 » Mon Dec 25, 2017 12:28 pm

bitchslapped wrote:Hello Everybody,
There are a few people on here following the story of my BFF, 64, F dx'd w/appendix cancer low grade mucinous neoplasm, 2cm, 0 LN + mucinous carcinoma peritonei or something close to that (spread to peritoneum). There are so many different dx to appendix cancer. Anyway, I intended to share her HIPEC experience, CRS/HIPEC (Cytoreductive Surgery + Hyperthermic Intraperitoneal Chemoperfusion) here on the forum b/c we don't see that many of them on here...recent ones, or much detail. Of course this is all second hand info, so w/b short on some of the details as they are out of state now for the surgery, but intend to share the good, the bad & the ugly as I know it. Might be some editing along the way.

Brief Background:
It took many docs to finally get this dx, laparoscopic surgery to remove appendix + a couple of lesions in peritoneum, one of which was close to the liver. This eliminated her upper right side abdominal pain that she had been experiencing for a few months. She then flew to consult w/Dr. Andrew Lowy, UCSD, @ which time he estimated her PCI (peritoneal cancer index) of under 10, making her a good candidate for HIPEC w/estimate of 5 hr CRS + HIPEC.

Surgery
Increased exercise program approx 6 wks in advance of HIPEC, i.e. extra walking. Bowel prep day before surgery. The procedure took place Fri.,Dec.1, approx 6 hrs total. Long incision; stem to sternum, closed w/glue (adhesive vs staples). Disease was limited to the right side of abdomen, lower tumor burden than they typically see, 2 lesions on liver, one upper diaphragm, the balance apparently is removed via stripping out the peritoneum likened to removing wallpaper as described by doc, also removed the omentum. No organs removed, HIPEC portion (chemo bath of mytomycin-C approx 90 min enclosed, manual manipulation to circulate, drained, added small additional amount of mytomycin-C for another 45 min) post CRS. It was decided ICU not necessary; moved to regular private room. Yesterday afternoon (12/2) she was sitting up on the edge of her bed, standing up w/walker, however learned from email from her DH that last night pain from drain tube, low blood pressure, heart rate 188, AFIB. 4 hrs of intense evaluation by team of docs (incl cardiologist), nurses, chest x-ray, going over options + considering moving her into ICU. "Administered the right medication & her heart snapped back into rhythm with lots of cheers and "woo-hoos" from the staff on duty", per update from her son. They got her normalized around 11:30 pm in her room. She does take BP meds. Apparently, this is fairly common, though serious. This afternoon (12/3, 2 days post surgery) she was resting comfortably in a chair, took a lap around the hospital ward.

I was a little unnerved by this turn of events, but all seems well for now.
BS


Thank you for sharing. Wish your friend will have good luck for her treatment.
My mom didn’t have any symptom before she got the colonoscopy screening done last November. The pre-surgery Biopsy reviewed she has a colon mass. After the surgery, they found out my mom has low grade adenocarcinoma ascending colon cancer. Since the CT was negative and the CEA was 2.3. The oncologist suggested no chemo at all.
She started to have abdominal pain since the end of this May. At the beginning of this July, the oncologist found she has localized small perio met. We went to JHH and the tumor board decided to put her in chemo first, and then surgery plus HIPEC( they said they will try to cure her).
However, the tumor progressed aggressively after she had 4 FOLFOX. Now she has numerous seeding and some are pretty big. We went to 3 cancer center that designated by NCI. Unfortunately, no Drs can explained why this happened to us. They said the tumor behaves like appendix cancer.
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

User avatar
bitchslapped
Posts: 1405
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: HIPEC - MY BFF W/Appendix Cancer

Postby bitchslapped » Tue Jan 02, 2018 8:15 pm

Hi BS,

Glad to know your BFF is doing well now and recovering. While it is important to walk and be active, it is also important to rest and ensure that no heavy lifting is done.
UCSD staff and care (Pre and Post OP) is absolutely great. I still communicate with them on regular basis and they always respond promptly. AJ




I definitely shared your post w/her AJ. :) So AJ, did you have any post surgical issues? Did you go back to work yet?

They did go to church Christmas Eve, Christmas Day, then over to some friends for Christmas dinner which was a little over 3 wks post HIPEC. I think she paid for it the next day. However, it is one month to the day now that she had HIPEC. She logged in 3 mi of walking @ the mall yesterday & when I talk to her on the phone lately I hear dishes clanging as she puts them away & the washing machine going. Afternoons she naps.

One thing I wanted to add was that she had to give herself injections of enoxaparin (blood thinner) in the tummy for 3 wks to avoid post surgical blood clots...normal protocol for this doc. She is still not eating grains, raw veggies yet.

Since BFF's CEA, CA9.19 were within normal range, CT scans w/b the means of monitoring for her, "since they now know what to look for". She'll have followup CT in 4 months, then twice/yr to 5 yrs, then annually for 5 more (if I remember correctly).

She had gained 11lbs from pre surgery to post surgery to which she certainly asked the doc how could that happen when she isn't really eating?! :shock: He told her it's from the surgery, so don't worry about the water retention, that it would go away. The extra weight is now gone w/slight swelling of the ankles remaining.

At the beginning she was getting up @ night to urinate, sometimes sleeping upright in the lounge chair w/feet elevated, however currently, a side sleeper, is still sleeping on her back in the bed.


rachel2017 wrote:They said the tumor behaves like appendix cancer.




Rachel, I don't know what JHH is (John's Hopkins?), but your signature is a little confusing to me in stage of your DM's cancer, or if she had colon resection or just laparoscopy. However, if the docs are stating that it is behaving similar to appendix cancer, not sure what that means unless it is b/c it is mucinous adenocarcinoma which is harder to treat. Peri mets difficult to treat w/chemo due to lack of penetration through peritoneum lining. You mention 3 NCI cancer centers, but not all are created equally. Where are you located?

So, all is well.
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

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: HIPEC - MY BFF W/Appendix Cancer

Postby rachel2017 » Fri Jan 05, 2018 10:13 am

Rachel, I don't know what JHH is (John's Hopkins?), but your signature is a little confusing to me in stage of your DM's cancer, or if she had colon resection or just laparoscopy. However, if the docs are stating that it is behaving similar to appendix cancer, not sure what that means unless it is b/c it is mucinous adenocarcinoma which is harder to treat. Peri mets difficult to treat w/chemo due to lack of penetration through peritoneum lining. You mention 3 NCI cancer centers, but not all are created equally. Where are you located?

So, all is well.
BS[/quote]

Hey, BS, she is in John Hopkins now. We went to the Georgetown and Maryland as well. Still seeking a right doctor for her. We live in Washington DC metropolitan area. My mom had ascending colon resection on 1/23/2017 by laparoscopy. She has adnocarcinoma, which has 40-50% mucinous.
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

User avatar
bitchslapped
Posts: 1405
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: HIPEC - MY BFF W/Appendix Cancer

Postby bitchslapped » Fri Mar 09, 2018 7:59 pm

Had lunch w/BFF yesterday who had followup w/local oncologist (first appt) a couple of days ago who was in awe of how well she is doing post CRS/HIPEC! She w/b having CT scans next week.
Wanted to add a couple of links to this thread:

Regimens of Intraperitoneal Chemotherapy for Peritoneal Carcinomatosis from Colorectal Cancer
http://ar.iiarjournals.org/content/38/1/15.full

ICARuS Post-operative Intraperitoneal Chemotherapy (EPIC) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC) After Optimal Cytoreductive Surgery (CRS) for Neoplasms of the Appendix, Colon or Rectum With Isolated Peritoneal Metastasis (ICARuS)
https://www.clinicaltrials.gov/ct2/show/NCT01815359


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


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