Surgery scheduled, clinical study for Lifeseal, questions about recovery

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Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Thu Feb 08, 2018 12:11 pm

I have the full report on Stanford's portal. What did I miss?
Checked out comfy clothing site, will be making an order. It's so warm right now all I want to do is sit in sun or garden.
Good time for laying low, did get in 3000 steps.
Had two mishaps yesterday. Poked a tiny hole in bag when cutting, about an hour later had a wet spot on my skirt and had to change bag again, solo.
Went to a restaurant with a friend , so hard to find something to eat and with all the chewing was exhausting. Quite a long lunch. Will stick to soups from now on.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Sat Feb 10, 2018 4:53 am

Caat55 wrote:I have the full report on Stanford's portal. What did I miss? ...

Here are the main categories in a pathology report. These are the most important ones to consider, but there are other important ones that might be listed in your report -- for example, MSI status.

Since you had neoadjuvant chemoradiation, the section Response to neoadjuvant therapy is relevant in your case. Also, in this case, your staging is a "y" staging, where the "y" prefix indicates neoadjuvant treatment prior to surgery. Thus, the proper way to write your pathology staging is ypT2N0

O Stoma Mia wrote:
Here's a typical path report template:

    Path Report Template

    Table 2
    Surgically resected specimens of colorectal cancer – Checklist

    Tumor site:
    Cecum
    Ascending colon
    Hepatic flexure
    Transverse colon
    Splenic flexure
    Descending colon
    Sigmoid colon
    Rectosigmoid junction
    Rectum

    Tumor size
    Maximum tumor diameter: cm

    Histologic type
    Adenocarcinoma
    Mucinous adenocarcinoma
    Signet-ring cell carcinoma
    Small cell carcinoma
    Squamous cell carcinoma
    Adenosquamous carcinoma
    Medullary carcinoma
    Undifferentiated carcinoma
    Other (specify):

    Grade of differentiation
    Low grade (well or moderately differentiated)
    High grade (poorly differentiated or undifferentiated)
    High grade component (%):

    Depth of tumor invasion
    No evidence of primary tumor
    Tumor invades submucosa (pT1)
    Tumor invades muscularis propria (pT2)
    Tumor invades through the muscularis propria into the subserosal adipose
    tissue or the nonperitonealized pericolic or perirectal soft tissues (pT3)
    Tumor penetrates to the surface of the visceral peritoneum (serosa)
    (pT4a)
    Tumor directly invades other organs or structures
    (specify:) (pT4b)
    Tumor penetrates to the surface of the visceral peritoneum (serosa) and
    directly invades other organs or structures
    (specify: ) (pT4b)

    Margins of resection
    Proximal/distal margin
    Cannot be assessed
    Invasive carcinoma present
    Invasive carcinoma absent
    Distance of invasive carcinoma from closest margin:
    mm
    Circumferential (radial) margin
    Not applicable
    Cannot be assessed
    Invasive carcinoma present
    Invasive carcinoma absent
    Distance of invasive carcinoma from non-peritonealised margin:
    mm

    Regional lymph nodes
    Number examined:
    Number involved:

    Tumor deposits
    Not identified
    Present (number: )

    Response to neoadjuvant therapy
    Not applicable (no prior treatment)
    Complete regression
    Minimal residual tumor
    No marked regression

    Extramural venous invasion
    Not identified
    Present

    Pathologic staging (pTNM)
    TNM descriptors
    (required only if applicable)
    m (multiple primary tumors)
    r (recurrent)
    y (posttreatment)

    Primary tumor (pT)
    pTX: Cannot be assessed
    pT0: No evidence of primary tumor
    pTis: Carcinoma in situ, intraepithelial or invasion of lamina propria
    pT1: Tumor invades submucosa
    pT2: Tumor invades muscularis propria
    pT3: Tumor invades through the muscularis propria into pericolorectal
    tissues
    pT4a: Tumor penetrates the visceral peritoneum
    pT4b: Tumor directly invades other organs or structures

    Regional lymph nodes (pN)
    pNX: Cannot be assessed
    pN0: No regional lymph node metastasis
    pN1a: Metastasis in 1 regional lymph node
    pN1b: Metastasis in 2 to 3 regional lymph nodes
    pN1c: Tumor deposit(s) in the subserosa, or nonperitonealized pericolic
    or perirectal tissues without regional lymph node metastasis
    pN2a: Metastasis in 4 to 6 regional lymph nodes
    pN2b: Metastasis in 7 or more regional lymph nodes

    Distant metastasis (pM)

    Not applicable
    pM1: Distant metastasis
    Specify site(s):
    pM1a: Metastasis to single organ or site (e.g., liver, lung, ovary,
    nonregional lymph node)
    pM1b: Metastasis to more than one organ/site or to the peritoneum

    Additional pathologic findings

    None identified
    Diverticular disease, ulcerative colitis, Crohn’s disease, familial
    adenomatous polyposis, other forms of polyposis, synchronous
    carcinoma(s) (complete a separate form for each cancer), etc.
    Specify:
    Polyps present (specify type and number):

    Comments

    Reference:
    Recommendations for the Reporting of Surgically Resected Specimens of Colorectal Carcinoma
    Human Pathology, April 2007 Volume 38, Issue 4, Pages 537–545



Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Sat Feb 10, 2018 10:45 am

Thank you Mio. I will print the report, highlight these parts for my appointment on Thursday. I see everyone, stoma nurse, surgeon and oncologist.
Thank you for all your wisdom.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

retiredteacher
Posts: 97
Joined: Sat Oct 21, 2017 1:34 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby retiredteacher » Sat Feb 10, 2018 4:33 pm

Susan, congratulations on a successful journey! I am about three weeks behind you, anticipate Stanford surgery Feb. 20. Have been following your story and it has been very helpful - although I do feel like I am cheating someone's homework over their shoulder, as your questions and Stoma Mio's answers and information are really addressing what is on my mind right now. I am very impressed with how quickly you've bounced back from surgery. Thank you for keeping us up to speed on your progress and best wishes for continued healing!
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Sat Feb 10, 2018 9:07 pm

[quote="retiredteacher"]Susan, congratulations on a successful journey! I am about three weeks behind you, anticipate Stanford surgery Feb. 20. Have been following your story and it has been very helpful - although I do feel like I am cheating someone's homework over their shoulder, as your questions and Stoma Mio's answers and information are really addressing what is on my mind right now. I am very impressed with how quickly you've bounced back from surgery. Thank you for keeping us up to speed on your progress and best wishes for continued healing![/quote

I did the same with NHMike. Judged my progress by his story. I went in Friday, left Sunday just to get another day of rest, teaching in. Nurses and aides were great. Really didn't need anything but my robe, shampoo/conditioner and slippers I stayed in PJs. My vitals were stable so they stopped waking me up at night.
The bubbles were pretty uncomfortable post op.. walking and massage help. I couldn't believe how sore as were, every muscle hurt. The custard was yummy, pancakes comforting breakfast..
Did 5000 steps today. Emptying bag comes pretty quickly. Changing more scary. I am back Thursday to see Dr. Shelton, stoma nurse.
You are in great hands! :D
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Sun Feb 11, 2018 12:10 am

Caat55 wrote:.... my appointment on Thursday. I see everyone, stoma nurse, surgeon and oncologist....

Caat55 wrote:... I am a pediatric occupational therapist. Time on the floor, table top with kids, lots of ups and downs, into and out of vechicle. Can any one tell me about healing time? ...

In your appointments on Thursday, I think you should ask if anyone can give a referral to a specialist or practitioner who can help you build up your core muscles and pelvic floor muscles, because you will need to have good muscle tone if you are planning to go back to work soon. It looks like your work will require a certain amount of lifting, pulling, etc., and you will need to be in good shape for that so that you don't cause a parastomal hernia or incisional hernia while you are doing your work.

I'm not sure what kind of specialist this would be, but it would need to be someone who has experience in working with patients who have had rectal surgery. Most of the therapists who specialize in areas like pelvic floor rehabilitation work with post-partum females who need help after childbirth, but this is different from pelvic floor rehabilitation where rectal surgery may have damaged or removed some of the critical muscles and nerve connections.

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Mon Feb 12, 2018 1:59 pm

Great suggestion about pelvic floor program. I spoke to my yoga/Pilates instructor last night. She will work with me when I am released for exercise. Started isometric program, kegels. I can use the continuing education credits for my license so I will look into a class, double benefit. There is a PT nearby who has some pelvic floor training. I will ask for a prescription.

Did anyone experience deep pain in butt, pelvic bone soreness?
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Tue Feb 13, 2018 12:30 am

Caat55 wrote:... Started isometric program, kegels...

Excellent initiative! Colorectal cancer patients with an ileostomy need to exercise their sphincter muscles daily. This is because their sphincter muscles typically will be "off-line" for 6 to 8 months or so, with no daily bowel movements. And the pelvic floor muscles that ordinarily control bowel movements become weak if they are not used regularly.

Thus, patients who have not been doing their daily isometric sphincter exercises may have a big surprise when it comes time for ileostomy reversal: Their sphincter muscles don't work so well anymore.

retiredteacher
Posts: 97
Joined: Sat Oct 21, 2017 1:34 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby retiredteacher » Wed Feb 14, 2018 9:08 am

Hope you are still feeling optimistic and on the upswing!

"The bubbles were pretty uncomfortable post op.. walking and massage help."

Questions: What did you do/have while you were hospitalized, for pain? Looks like you had a very short stay - Friday to Sunday WOW!

Can you explain the bubbles/massage part?

Terri
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Wed Feb 14, 2018 12:27 pm

Terri

I had a pump briefly, I guess I didn't use it enough because they disconnected it the next day. I had three oxi, one a day Wed, Thurs and Friday. They gave me gabapentin for nerve pain as needed, tylenol(2 300mg). So really not much but I took at when offered. I did not fill the oxi prescription when I came home, I have been taking Tylenol and ibuprofen as well as one gabapentin when it gets bad. When it is bad it is all rectal pain, both internal and external which sneaks up on me at the end of the day.

They gave me the option of leaving either Saturday or Sunday. I wanted to see dietitian which happened on Saturday and plenty of practice with stoma before coming home. I ended up with an incision on the top of my pubic area which I hadn't planned, so I wanted to be sure I could get into and out of bed alone.

I move around a lot, got my hair cut yesterday, went for a quick shopping trip for Valentine's gifts. I putter with plants on my deck, gather eggs, water plants in green house. I can't walk my dog as he pulls on leash when we start off. The home health nurses cautioned me about risk for hernia which I can understand with my abdominal muscles having been teaked. Notes from hospital have a 10 pound weight limit, avoid driving.

You have to drink a crazy amount of liquid to stay hydrated. I am finding it a challenge as its chilly but if I don't my urine is so strong it literally burns my skin, causes a little bleeding.

They fill you with gas for the laparoscopy, it made me incredibly burby and had pains behind my collar pain and in my shoulders that are hard to describe. My irrational brain thought it was a heart attack but on the right side so I knew it wasn't.

Moving forward,
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Wed Feb 14, 2018 2:39 pm

caat55 wrote:... I ended up with an incision on the top of my pubic area which I hadn't planned...

This was explained in a previous post by nkoske
    In July 2016 nkoske wrote:
    CatherineG inAF wrote:I had the surgery done laparoscopic but have a 6 inch incision near my pubic hair line.

    I pretty sure this is standard. Laparoscopic ports are between 1/2" -1", so there's no way they'd be able to pass the resection through them. So they need to make a bigger incision to get it out. They also have some stapler bits they need to pass into the abdomen for the anastomosis (coupling) of the colon, that would not fit through a laparoscopic port.


Earlier, nkoske had posted an.animated picture of the healing of this bigger incision:of his:

In December 2013 nkoske wrote:...
Animated Gif of my incision healing
Image

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Wed Feb 14, 2018 3:11 pm

Wow, that's really interesting and it makes sense, kind of what I figured had to happen. I didn't have any of the visible bruising but definitely feel sore on pelvic bones. I have tried to search but Mio you know all the tricks, thank you.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Fri Feb 16, 2018 2:46 am

Duplicate post
Last edited by O Stoma Mia on Fri Feb 16, 2018 4:56 am, edited 1 time in total.

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby O Stoma Mia » Fri Feb 16, 2018 2:49 am

When you talked with your surgeon yesterday, did he have anything to say about why you weren't considered for the LifeSeal™ clinical trial?

LifeSeal™ is already approved for use in Europe and has been available on the market there for almost two years now. In the US, however, it is still not approved for general use. Does your doctor know why?

Earlier you said that your PA announced that the clinical trial had been cancelled, but I have not seen any such announcement. All I can see is that primary enrollment for the trial had been scheduled to stop sometime in March 2018. It looks to me like the trial is still ongoing, but that maximum enrollment may have already been exceeded.

*LifeSeal™ is CE marked and available for commercial use in Europe. LifeSeal™ is limited by U.S. law to investigational use only and is not yet approved for sale or distribution in the US

Ref: http://www.life-bond.com/index.php/lifesealtm/

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Fri Feb 16, 2018 11:24 am

According to the physician's assistant, they were not taking any new patients for the study. This did not mean the study was cancelled but closed, his belief was that Lifeseal believed they had enough patients enrolled.

The physician was very pleased with the surgery, margins were clean. They were able to leave enough of my rectum that I shouldn't have to run to the restroom when I have the urge but enough to quickly finish what I am in the middle of an go. This is important for me, I can make sure my patients are safe and excuse myself.

Oncologist was pleased with tumor's response to chemo and radiation. He is suggesting I mayhave a choice on which drugs I do next for Chemo. His concern is the long term neuropathy given what I do professionally. Any thoughts folks?

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018


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