New on site, Husband of 33 year old Fighter

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Griffcl
Posts: 7
Joined: Mon Oct 30, 2017 7:57 am
Facebook Username: Chad Griffith

New on site, Husband of 33 year old Fighter

Postby Griffcl » Mon Oct 30, 2017 9:24 am

So, I've been lurking and preening information since back in May when my wife was first diagnosed. This year has been nothing short of hell. She joined the boards a little while ago. She has not been active on since her initial post. I understand her reasoning completely. However, I have questions and concerns that I would like to ask around about form time to time, and thought I would go ahead and sign up!

So I threw most of her history down in my signature. She is 33 initially diagnosed back in May, had a "complete" removal of the initial tumor that had perforated her colon wall. No mets to lymph nodes and clear margins. The initial surgery was an emergency surgery performed at a local hospital, amazing surgeon but a general surgeon.

We went to UAB, about an hour and a half down the road. Got an Oncologist and he started her on Xeloda, granted this was 6 weeks post op. Her tests and paths that UAB did separately came back with the same assumption the General Surgeon had. The main tumor mass was removed, no signs of spread, carry on with oral chemo. Her oncologist did go ahead and order a PET.

The PET came back with "hot spots". One at the resection site, one near and ovary, and one in lower right quadrant near her hip. He refereed her to the Chief of Surgical Oncology at UAB, his specialization is gastro-intestinal cancer. He took a look and assumed residual tumor left behind from initial surgery. So, he went in to remove. Within 5 minutes of being "in" he realizes the tumor had spread t peritoneum and there was nothing surgically he could do.

So now we are Stage 4 and palliative. Enter more shock and more depression. It seems like every trip to a doctor has resulted in worse and worse news. There has to be something good somewhere right?

After the surgeon gave me the news I went straight to Google, because that is always the first response these days. This led me to some horrendous survivability numbers and also HIPEC. Which seems to be the best treatment option, if she can qualify. So scrounged around for doctors and facilities and sent out a few emails. Within 30 minutes I had a response back from a Dr. at Emory. I talked to him that day and a few more times over the next few days. I also talked to admitting people at MD Anderson but I could not even talk with a doctor until we had been accepted as patients and had an initial visit. We are a young family with two sons, 3 years and 9 months, a pane trip to Houston is not out o the question but currently I am not seeing the benefit over the Doctor I have talked to at Emory.

I know the positive outcome results from HIPEC can be significantly increased by surgeons with vast experience in the procedure. The Dr. at Emory does about 30 HIPEC procedures a year, and his team does a combined 100 annually. That seemed like a decent amount of experience to me.

He knows Dr. Fabian Johnston at Johns Hopkins, who is the Dr. her ontological surgeon at UAB has recommended. I believe they were in residency at Pittsburgh together. Anyways, we know that HIPEC is the ultimate goal, we just have to get her to that point.

Right now she had two abscesses two weeks ago, both appear to be at previous tumor sites. The optimistic thought is that these are the result of residual bacteria attacking necrotic tumors, which would mean the chemo is doing its thing. The down side to what ever the reason is that no chemo while she fights these. They drained one and as of an ultrasound Thursday there was no sign. The one on her ovary however was not reachable for aspiration and the antibiotics seem to have had no affect on it, it actually grew by a few mm.

We go for an MRI on Wednesday and to talk with her oncologist about all of this, I am hoping so hard that if they have to go in it can be laparoscopic. 3 major surgeries in a year is enough, she doesn't need a fourth. Also we could use some positive news.

With all of this being said I have a few questions I would like to throw out to the wonderful community here:

1. Any experience with abscesses and drainage/removal?

2. Anyone with experience of HIPEC at Emory? Good/bad/indifferent?

3. Any and all thoughts and recommendations are appreciated on any aspect of what I have said here.

Thank you all!
Husband of Fighter!
Diagnosed 5/17 Age: 33
5/17 CR Adenocarcinoma 5x6x6 cm, T4NoMo
No Lymph nodes and clear margins
6/17 Began Xeloda
7/17 PET Showed additional activation
7/17 Lap discovered mets to Peritoneum
9/7/17 Began FOLFIRI
9/20/17 Added Avastin (bevacizumab)
10/17 Abscess on two tumor sites, treatment on hold
11/15 Readmitted, drain placed in abscess, partial small bowel obstruction, fistulas present
11/22 Discharge with drain, resumed FOLFIRI

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New on site, Husband of 33 year old Fighter

Postby DarknessEmbraced » Mon Oct 30, 2017 1:36 pm

I'm sorry you and your wife have been going through so much!*hugs* I hope they can find a way to heal the ovarian abscess and that the meeting with her oncologist will go well.*hugs* I know others on here will be able to advise you regarding HIPEC.
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Griffcl
Posts: 7
Joined: Mon Oct 30, 2017 7:57 am
Facebook Username: Chad Griffith

Re: New on site, Husband of 33 year old Fighter

Postby Griffcl » Tue Oct 31, 2017 12:47 pm

Thanks Darkness! The struggle to stay positive is difficult at times, especially when every trip results in back pedaling or worse news. She's tough though and stubborn, which I think are wonderful attributes for fighting!
Husband of Fighter!
Diagnosed 5/17 Age: 33
5/17 CR Adenocarcinoma 5x6x6 cm, T4NoMo
No Lymph nodes and clear margins
6/17 Began Xeloda
7/17 PET Showed additional activation
7/17 Lap discovered mets to Peritoneum
9/7/17 Began FOLFIRI
9/20/17 Added Avastin (bevacizumab)
10/17 Abscess on two tumor sites, treatment on hold
11/15 Readmitted, drain placed in abscess, partial small bowel obstruction, fistulas present
11/22 Discharge with drain, resumed FOLFIRI

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: New on site, Husband of 33 year old Fighter

Postby bitchslapped » Tue Oct 31, 2017 3:58 pm

Very good for you to come on aboard here! My DH used to receive antibiotics for liver abscesses, pill form, (sometimes IV antibiotics following septic shock), which you want to watch out for. Sudden onset of high fever, chills etc. Though you may have very capable docs, w/a patient prone to liver abscess, I strongly advise to bring a doctor of infectious disease onboard as part of the medical team, sooner than later. Managing antibiotics is what they do. Not that your docs can't, but specialized opinion...you've got a young mom there.

Suggest you enter HIPEC in the search box for more info + also Emory on separate search to assist in your decision making if you haven't already.
My BFF currently searching for HIPEC of which Johns Hopkins was ruled out by recommendation (not large enough focus there). HIPEC @ Emory you don't see thrown around on this forum or in general from what I've seen, but according to your #'s posted, I would agree. Some researchers are just more well known. Check their bio for publications (PubMed) or for main focus colon cancer. The most important success of HIPEC relies on the CRS (cyto reduction surgery) of disease that can be removed. HIPEC is heated chemo bath afterwards to clean up microscopic cells that might remain. Very harsh procedure, long recovery. Recurrence avg 19 - 24 months. Read recently Dr. Sugarbaker (pioneer of HIPEC) not doing on colon cancer patients anymore as not quite as successful as appendix cancer. Only read that from one source, so you decide validity.

I can't imagine w/an extreme surgery such as HIPEC w/extended surgery time, abdominal cavity exposed to air, that those abscesses would need to be under control first. At least not a doc I'd want. Infection common complication w/HIPEC.

Don't get discouraged, just be diligent. You are wise to consider options now. Don't rule out clinical trials, other options, immumotherapy, 2nd opinions, third opinions. You've got a lot on your plate to juggle w/job, wife, kids.

Let us know how scans turn out.

Best Wishes
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, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: New on site, Husband of 33 year old Fighter

Postby CRguy » Tue Oct 31, 2017 5:27 pm

Griffcl wrote:With all of this being said I have a few questions I would like to throw out to the wonderful community here:
of which you are BOTH now a part ... Welcome my friend

1. Any experience with abscesses and drainage/removal?
post-op pre-sacral abscess, delayed my adjuvant chemo from my initial resection. Treated with MEGA antibiotics (meropenem = RAMBOcillin according to my docs ! ) interventional radiology placing an indwelling drain catheter which I ended up flushing myself at home ( I am a vet with 36 years treatment experiences :shock: :mrgreen: ) and that got pulled after 2 weeks and a contrast CT scan of the pocket

2. Anyone with experience of HIPEC at Emory? Good/bad/indifferent?
No personal experience ... BUTT we have have some major successes with members here ... SEARCH for HIPEC as BS has noted above
JMO : if you have an experienced HIPEC surgeon who will work with you = go for it ... JMO.


3. Any and all thoughts and recommendations are appreciated on any aspect of what I have said here.
Dr. GOOGLE is a bitch :twisted: ... BUTT sometimes a necessary evil when you are first thrown into this mix.
Please continue to ask questions HERE and get our collective brain trust and experiences working with you

AND...... make sure the docs give you the answers and info so you understand what is going on,
BE pro-active and most of all
There IS always HOPE !


Thank you all!

Sending MEGA ++++++ POSI vibes to your wife, you and family.
We are with you the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: New on site, Husband of 33 year old Fighter

Postby chrissyrice » Tue Oct 31, 2017 6:08 pm

If you are considering Dr Staley at Emory Winship in Atlanta, then I highly recommend his skills and medical team. I have not had HIPEC but my last 2 surgeries and one more coming up in late November or December.

MD Anderson is great too.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: New on site, Husband of 33 year old Fighter

Postby bitchslapped » Tue Oct 31, 2017 7:43 pm

Griffcl, I must be confused as to where the cysts are. Looking @ your signature & post it appears no spread to wife's liver which was the site of abscesses for my DH; my mind immediately went there. However, I stand by my recommendation, especially if chemo is postponed due to these abscesses. Our pharmacist told me way back in 2006 that too often docs don't refer out to docs of infectious disease soon enough. He shared his particular story, which of course I wouldn't remember, but he referred himself out. Last 6 mos of DH's life (situation entirely different than yours) his infections were managed through the specialist & if I'm remembering correctly, antibiotics were rotated on a monthly basis.

JMO
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, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Griffcl
Posts: 7
Joined: Mon Oct 30, 2017 7:57 am
Facebook Username: Chad Griffith

Re: New on site, Husband of 33 year old Fighter

Postby Griffcl » Wed Nov 01, 2017 6:51 am

Thank you so much CRGuy!

Insurance is being a you know what about approving an MRI to check the ovarian abscess. We are still heading down to talk to her oncologist. Just incredibly antsy to get her back in treatments.

Bitchslapped. I regards to said abscesses the one that was drained, lower right side, has completely disappeared. So draining and antibiotics did their job. She has an infectious disease doctor on her case as far as his/her continued role I can’t say at the moment. They did a good job isolating the bugs from the drained abscess. Right now it seems the wall around the ovarian abscess is too thick to allow antibiotics to penetrate. This is will be the crux of our discussion with the onc today.

Chrissyrice that is great to hear! We are talking with Dr. Winer who works directly under Dr Staley. I believe it is just the two of them handling all HIPECs at Rmory. We have been very impressed. Professionalism, attitude, and overall responsiveness have been phenomenal. Her surgical onc at UAB did tell us that HIPEC has been a major source of profitability for some doctors and hospitals, which of course has made us skeptical of everyone’s internet now, lol. But like I said we have been very impressed and at the moment are not actively seeking input from any other surgeons.

Thank everyone again for the information and support. I will post an update tonight or tomorrow after today’s oncologist visit.
Husband of Fighter!
Diagnosed 5/17 Age: 33
5/17 CR Adenocarcinoma 5x6x6 cm, T4NoMo
No Lymph nodes and clear margins
6/17 Began Xeloda
7/17 PET Showed additional activation
7/17 Lap discovered mets to Peritoneum
9/7/17 Began FOLFIRI
9/20/17 Added Avastin (bevacizumab)
10/17 Abscess on two tumor sites, treatment on hold
11/15 Readmitted, drain placed in abscess, partial small bowel obstruction, fistulas present
11/22 Discharge with drain, resumed FOLFIRI

Griffcl
Posts: 7
Joined: Mon Oct 30, 2017 7:57 am
Facebook Username: Chad Griffith

Re: New on site, Husband of 33 year old Fighter

Postby Griffcl » Fri Nov 03, 2017 6:27 am

We had a no bad news visit to the oncologist yesterday! Insurance finally agreed to pay for the MRI. Her onc believes since she is currently on antibiotics Andres blood work shows no signs of active infection it is best to go ahead and resume treatments. While the abscess is still an unknown at the moment it was good to feel like we are moving forward with the attack!

Let’s just hope the MRI next week is a positive experience and doesn’t present anything that would prevent her treatment.

Once again thanks for all of the information and support so far. It’s a hell of a roller coaster
Husband of Fighter!
Diagnosed 5/17 Age: 33
5/17 CR Adenocarcinoma 5x6x6 cm, T4NoMo
No Lymph nodes and clear margins
6/17 Began Xeloda
7/17 PET Showed additional activation
7/17 Lap discovered mets to Peritoneum
9/7/17 Began FOLFIRI
9/20/17 Added Avastin (bevacizumab)
10/17 Abscess on two tumor sites, treatment on hold
11/15 Readmitted, drain placed in abscess, partial small bowel obstruction, fistulas present
11/22 Discharge with drain, resumed FOLFIRI

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: New on site, Husband of 33 year old Fighter

Postby ocstacy » Sun Nov 05, 2017 3:14 am

Right now she had two abscesses two weeks ago, both appear to be at previous tumor sites.


My mom went back to the hospital after two weeks after her LAP surgery. She was complaining about some agonizing pain and all of the dr's and nurses kept assisting to her that it's the recovery process and that it's suppose to take time. Then them mentioned possibly hernia, how it's an abscess which i guess is common but they never mentioned it to us. The aren't draining as of yet but my mom is on clear liquid fluids and on antibiotic iv. She is so thin already, I am going to see her tomorrow but a little nervous. I am not a nurse or dr. (yet) but I feel like the Dr's. don't know what they heck they are doing at times. i wish you the best and a positive outcome for your wife. xoxoxo
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Griffcl
Posts: 7
Joined: Mon Oct 30, 2017 7:57 am
Facebook Username: Chad Griffith

Re: New on site, Husband of 33 year old Fighter

Postby Griffcl » Wed Nov 08, 2017 11:22 am

Thanks Stacy. She's had some issues eating as well. Between the abscess and a stomach bug her diet has been probably around 1000 calories. Which is probably half of what it should be. Tomorrow's MRI should hopefully shed some light. I'm trying to stay positive about the situation and that she can power through this little road bump. Fingers crossed nothing horrid pops up and she can have her treatment tomorrow.
Husband of Fighter!
Diagnosed 5/17 Age: 33
5/17 CR Adenocarcinoma 5x6x6 cm, T4NoMo
No Lymph nodes and clear margins
6/17 Began Xeloda
7/17 PET Showed additional activation
7/17 Lap discovered mets to Peritoneum
9/7/17 Began FOLFIRI
9/20/17 Added Avastin (bevacizumab)
10/17 Abscess on two tumor sites, treatment on hold
11/15 Readmitted, drain placed in abscess, partial small bowel obstruction, fistulas present
11/22 Discharge with drain, resumed FOLFIRI


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