HIPEC - MY BFF W/Appendix Cancer

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bitchslapped
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HIPEC - MY BFF W/Appendix Cancer

Postby bitchslapped » Sun Dec 03, 2017 7:49 pm

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) 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
Last edited by bitchslapped on Thu Dec 14, 2017 5:03 pm, edited 2 times 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

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CRguy
Posts: 9323
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Re: HIPEC - MY BFF W/Appendix Cancer

Postby CRguy » Sun Dec 03, 2017 8:44 pm

Sending her best wishes and it sounds like a generally good outcome overall, cancerwise.

The cardiac stuff is always an issue it seems, because so much of what is done, and given to patients, will interact with some kind of meds a person is already on !
Once all the drugs start getting cleared out things should settle down a bit for her.

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

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Robino1
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Re: HIPEC - MY BFF W/Appendix Cancer

Postby Robino1 » Sun Dec 03, 2017 9:13 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, Moores Cancer Center @ 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
Bowel prep day before surgery. The procedure took place Fri.,Dec.1, approx 6 hrs total. 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) approx 45 min - 1hr. 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 180, AFIB. Team of docs got her normalized around 11:30 pm. She does take BP meds. This afternoon (12/3) she is up in a chair, took a couple of steps.

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


Thank you for the update. Continued prayers for your friends recovery. Please do keep us posted on her progress. I'm following this closely.
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 :(

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: HIPEC - MY BFF W/Appendix Cancer

Postby MissMolly » Sun Dec 03, 2017 9:33 pm

BS aka Ethel:
Sending gentle prayers for recovery and healing to your BFF.

Sending a tail wag and sing-song Roo Roo Roo to you from my happy-as-sunshine Maltese, Molly. A life-long friend, as is your BFF, occupies a special and unreplaceabke place in one’s heart. I am thinking of you, sending you my best.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

AJQ
Posts: 21
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: HIPEC - MY BFF W/Appendix Cancer

Postby AJQ » Sun Dec 03, 2017 10:04 pm

bitchslapped wrote:Surgery
Bowel prep day before surgery. The procedure took place Fri.,Dec.1, approx 6 hrs total. 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) approx 45 min - 1hr. 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 180, AFIB. Team of docs got her normalized around 11:30 pm. She does take BP meds. This afternoon (12/3) she is up in a chair, took a couple of steps.

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


Glad to hear your friend is recovering well now. She is in good hands with a good team of medical staff at UCSD.
Please keep us posted on her progress and recovery.

AJ
52 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/21/17: baseline CT
7/27/17: started Xelox (Capox) cycles
10/09/17: CT scan. Multiple Peri and Pelvis mets
11/1/17: CRS/HIPEC. All nodules removed- low PCI NED :D

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bitchslapped
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Location: PNW/USA

Re: HIPEC - MY BFF W/Appendix Cancer

Postby bitchslapped » Sun Dec 03, 2017 10:48 pm

Thanks All for your well wishes. Heartwarming. I w/b sharing them w/her + family. She has come to realize in a very short time how generous/caring people are on this "forum" (my people), though she doesn't know which forum. I do speak of ya'll from time to time. Don't worry; only the good stuff. :lol: :P
Honestly, that's how she even knew about HIPEC was I had mentioned it to her a long time ago from this forum.
Made some edits above.
My mother collapsed in my arms from AFIB when I stopped by to take her to doc appt for shingles pain. Not long after she had debilitating stroke from what I believe continual pain. She was a lot older, but was the first we ever knew of AFIB for her.
It scares me, but if you're going to have it, the hospital is the best place to be.
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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O Stoma Mia
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CRS plus HIPEC

Postby O Stoma Mia » Mon Dec 04, 2017 6:24 am

bitchslapped wrote:... 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...

BS - Thank you for taking the time to share some of the details of your friend's journey with CRS/HIPEC. I agree that details and personal accounts in these areas -- and on appendix cancer in particular -- are not easy to find. I'm sure that the information you provide will be useful to others, now and in the future. I very much admire you for your dedication to helping others, especially given all the heartaches that you yourself have had to endure.

I'm including below a Plain Language Summary of the CRS/HIPEC area, taken from a 103 page review report cited below. Persons interested in further details can download the report itself -- but as you have implied, even the medical experts don't have full information in all of these areas.


    CRS plus HIPEC
    Plain Language Summary

    Peritoneal malignancy (PM) is an advanced form of cancer found in the peritoneal
    cavity – the fluid-filled gap between the walls and the organs contain in the
    abdomen. This type of cancer occurs due to dissemination of primary tumour from
    the appendix, colon, rectum or ovaries. It is associated with short survival and poor
    quality of life.

    Cytoreductive surgery (CRS) refers to the destruction of visible tumour throughout
    the abdomen. This is then combined with hyperthermic (warm) intraperitoneal
    chemotherapy (HIPEC) to increase the effectiveness of the combined treatment.
    There is moderate to good quality evidence based on systematic review and meta-
    analysis for the clinical effectiveness of CRS plus HIPEC in highly-selected patients
    with PM of colorectal origin.

    There is poor to very poor data based on case series data available for the clinical
    effectiveness of CRS plus HIPEC in highly selected patients with PM of appendiceal
    origin. The majority of data for this tumour sub-type was available for patients who
    developed pseudomyxoma peritonei, a different disease which was outside of the
    scope of this review.

    There is moderate to poor quality evidence that quality of life is improved from about
    three months following the procedure. Quality of life responses were higher in well
    selected patients.

    In long-term follow-up, there was conflicting evidence for survivors whether they
    have similar QOL to that of a matched group of other cancer survivors, or if
    significant physical deficit remains in patients who had CRS plus HIPEC.
    There is poor to moderate quality evidence for safety for CRS plus HIPEC. The
    evidence available shows that CRS plus HIPEC carries a significant risk of mortality,
    morbidity and adverse events.

    There is poor quality evidence on recurrence rates following CRS plus HIPEC. The
    evidence available suggests a high recurrence rate which required 2nd and 3rd repeat
    interventions in the studies assessed.

    The evidence on cost effectiveness is limited to a single study. This shows that in
    highly selected patients CRS plus HIPEC may be cost effective but that the CI are
    large. The approach adopted in this study was based on a deterministic approach to
    cost benefit yielding a cost per life year analysis which did not take into account any
    data on QOL for this patient group and was based on a cost per life year calculation.
    .
    Annex (ii) CRS plus HIPEC version final draft 28.10.14 (103 pages)
    Ref: http://www.whssc.wales.nhs.uk/document/284802

Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

hawkowl
Posts: 64
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Location: MN/FL

Re: HIPEC - MY BFF W/Appendix Cancer

Postby hawkowl » Mon Dec 04, 2017 6:32 am

I wish her well!! I have a cousin who lives overseas and had HIPEC for appendix ca and peritoneal mets. Here surgery was about 3 1/2 years ago and she remains NED and off all chemo. She is doing great, and I hope your BFF has a similar experience!!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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bitchslapped
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Location: PNW/USA

Re: HIPEC - MY BFF W/Appendix Cancer

Postby bitchslapped » Thu Dec 14, 2017 8:33 pm

So many problems lately w/computer/wifi. Maybe that time of year, but really irritating, to say the least.
Update on BFF:

Surgery was 12/1.
12/6 (5 days post surgery) Epidural was removed, IV tubes, Dilaudid d/c'd. Pain managed orally, discharged 12/9, by 12/10 off pain meds completely (her choice). She doesn't like how they make her head feel cloudy. 12/12 followup visit w/dr., released to fly home 12/15. two wks post surgery.


Due to the AFIB incident she is on a couple of medications for 30 days to prevent/stabilize that situation. Recommended she followup w/cardiologist upon return home. In addition to the 2 lesions on the liver, 1 in the diaphragm, there were lesions on transverse colon, not penetrating the colon wall. 1 hr. 15 min spent on the diaphragm ("repair") alone. Pathology shows all lesions low grade, Total cancer index = 10. So she was a good candidate for HIPEC.

Two drain tubes, abdomen, upper abdomen. Tube in upper abdomen was the problematic one as epidural didn't reach that area, shoulder pains. Staff would put heat pads on shoulder. Removal of one of drain tubes problematic (think it was upper abdominal one they called chest tube). Required a couple of shots, but still was no picnic as stuff (tissue?) had collected around it. Arms a little black & blue from being poked. Gained some weight (water retention) from surgery that doc says should take care of itself shortly.

She is able to eat eggs, white toast, applesauce, yogurt, cottage cheese, protein drinks, even had salmon...can have oatmeal, soft breads. No nuts, hard breads, fruits w/skin, veggies yet. She walked in the hospital trying to increase day by day & continues walking @ the hotel she is now staying in. Her DH was able to leave & go to a couple of places of interest in San Diego. She mentioned that she was going to need to cut down on the Ducosate for her bowel. That is how well she is doing. She attributes the increased walking program presurgery + all of the walking since surgery to be of great benefit in recovery (I asked). So like AJ said: "Walk, walk, walk, walk."
She called me yesterday & we had a real nice, long conversation of some of the details, little bit of gossip & laughter. She sounds really good.

I asked her what she was thought was most useful in packing to bring along to the hospital. Her loose-fitting sweats & Bed Buddy for use on that shoulder to use @ the hotel. The brand new robe she bought for the hospital was not used until she got to the hotel. Hooked up to too many tubes in the hospital.

Over & over she says UCSD & Dr. Lowy & team have this procedure, aftercare dialed in @ that hospital. She said Dr. Lowy LISTENS, answers all questions, available. Saw him every day @ least once, + his team of docs 2-3 times/day (incl his NP). One entire floor is apparently dedicated to HIPEC cancer patients, cancer patients w/top equipment to handle all situations.
Perhaps AJ can elaborate on this a little more. Not trying to tout USCD whatsoever, however these may be things potential HIPEC candidate may look for in their providers, questions to ask.
BFF & DH took a tour of the hospital floor she would be on during their flight for initial consult.

There are two hospitals that publish their stats that I could find: UCSD & UPMC (Dr. David Bartlett).

Pubmed is a good resource for finding various studies on HIPEC. Also a good way to search authors (if you have a particular doctor in mind). Look for surgeons w/HIPEC experience in the 150 to 200 range. My computer too unstable right now, so quickly:

Some articles I read during HIPEC research links:

http://onlinelibrary.wiley.com/doi/10.1002/cam4.80/full

https://link.springer.com/article/10.12 ... 013-3145-9

http://www.sciencedirect.com/science/ar ... 8316309295


OSM: Thanks for the kind words & the citing. From my readings, mcrc PFS not quite as successful as appendicial cancer, however there are many variables.

On a lighter note, her hospital room was voted best decorated by hospital staff. Apparently they enjoyed going into her room. Sons & DH decorated walls w/pics of kids & grandkids, big NANA sign, grandkids writings, drawings, etc.

With BFF's permission, hoping this will be of use to someone here on the forum. As I learn new info will report in for updates.

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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Robino1
Posts: 225
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: HIPEC - MY BFF W/Appendix Cancer

Postby Robino1 » Thu Dec 14, 2017 9:05 pm

Thank you for the update. I am following this closely. :)
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 :(


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