Surgery scheduled, clinical study for Lifeseal, questions about recovery

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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 17, 2018 3:10 am

Caat55 wrote:... Oncologist was pleased with tumor's response to chemo and radiation. He is suggesting I may have 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? ..

I have some thoughts, but not much time this week to give details.

You were originally staged as Stage3. and you said in your first post that you would now be doing 4 months of Xeloda plus oxaliplatin (i.e. XELOX(CAPEOX) regimen). Has the plan changed? What choice of regimen do you have? Normally, the first-line adjuvant therapy for persons staged originally as Stage3 involves oxaliplatin and is given either as FOLFOX or as XELOX(CAPEOX). FOLFOX has infusions every 2 weeks, and XELOX has infusions every 3 weeks.

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Feb 17, 2018 9:42 am

I also think it is difficult, but I would avoid oxalyplatin if given the choice. Consider that here in Norway you would not have mop up chemo at all with no lynphonodes and good resection margins, if you had chemo and radio as neoadjuvant.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Feb 17, 2018 1:52 pm

O Stoma Mia wrote:
Caat55 wrote:... Oncologist was pleased with tumor's response to chemo and radiation. He is suggesting I may have 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? ..

I have some thoughts, but not much time this week to give details.

You were originally staged as Stage3. and you said in your first post that you would now be doing 4 months of Xeloda plus oxaliplatin (i.e. XELOX(CAPEOX) regimen). Has the plan changed? What choice of regimen do you have? Normally, the first-line adjuvant therapy for persons staged originally as Stage3 involves oxaliplatin and is given either as FOLFOX or as XELOX(CAPEOX). FOLFOX has infusions every 2 weeks, and XELOX has infusions every 3 weeks.


Those are the options exactly. The oncologist at Stanford said the the Folfox would be easier on me hands the the Xelox. He seemed to believe there would be less problems with neuropathy. I see the local oncologist on Wednesday and wanted to be better informed for that discussion.

Claudia,
I think we do things backward from you. It sounds like they throw everything at it at the front end in Europe with surgery last. The surgeon explained the surgery kicks lose some cancer cells, much like stepping into a calm lake stirs up the sediment. The mop up chemo goes after those cells so they don't settle in some where else.

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 17, 2018 2:57 pm

Caat55 wrote:...Those are the options exactly. The oncologist at Stanford said the the Folfox would be easier on me hands the the Xelox. He seemed to believe there would be less problems with neuropathy. I see the local oncologist on Wednesday and wanted to be better informed for that discussion...

I think that the Stanford oncologist might be right, and here are my reasons:

Whether you do FOLFOX or XELOX, you are expected to get exactly the same total amount of oxaliplatin over the course of the 4 months. The problem is that under XELOX the infusions are given only every 3 weeks, while the FOLFOX infusions are given every 2 weeks. This means that each infusion of oxaliplatin under XELOX has to be 1.5 times the size of the bi-weekly oxaliplatin infusions under FOLFOX. In other words, each time you get a FOLFOX infusion you are getting only 66.6% of what you would be getting at each XELOX infusion. Of course, there are more FOLFOX infusions altogether over the course of 4 months than there are XELOX infusions in order to make up the difference

So, if you are on XELOX, you are hit with an extra wallop of oxaliplatin at each infusion: 1.5 times what you would be receiving if you were on the bi-weekly FOLFOX schedule. So, the short-term toxicity of the infusions will be greater if you are on XELOX. And if you are the kind of patient who is ultra-sensitive to platinum-based drugs, then this difference in level of short-term toxicity can be substantial and could perhaps be cumulative and result in some long-term neuropathy.

Does this make sense?

I had XELOX, not FOLFOX, so I cannot make a personal comparison between the two. All I can say is that I still have periphersl neuropathy, and it has been over 5 years since I had my last infusion of oxaliplatin.

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Feb 17, 2018 3:27 pm

Of course if both options include oxalyplatin I would not exclude it, I thought the choice was between Xeloda only or Xelox. I know that mop up chemo is given to clean up residual cells that might have been released, but here they don’t think there is enough evidence that it helps after neoadjuvant therapy and a good surgery where the tumor is removed in block with good margins. Anyway I might have to do chemo for the lung tumor. I don’t know if I could have insisted for more chemo, I prefer to follow the advice of the oncologists since I trust them and chemo can really affect life quality on a long term.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Feb 17, 2018 3:32 pm

O Stoma Mia wrote:
Caat55 wrote:...Those are the options exactly. The oncologist at Stanford said the the Folfox would be easier on me hands the the Xelox. He seemed to believe there would be less problems with neuropathy. I see the local oncologist on Wednesday and wanted to be better informed for that discussion...



Does this make sense?

I had XELOX, not FOLFOX, so I cannot make a personal comparison between the two. All I can say is that I still have periphersl neuropathy, and it has been over 5 years since I had my last infusion of oxaliplatin.


He was suggesting oral Xeloda or baby bottle Folfox. How are your hands? My hands are my profession in every way,would the peripheral neuropathy cause me to be unable to use them intensely?

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

User avatar
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 17, 2018 5:39 pm

Caat55 wrote:... He was suggesting oral Xeloda or baby bottle Folfox. How are your hands? My hands are my profession in every way,would the peripheral neuropathy cause me to be unable to use them intensely?

I can't really say. In my case, my hands are OK except for doing things like working with, or picking up small items like screws, nails, coins, etc. I a!so have a hard time tying shoes, buttoning buttons,or using small tools like screwdrivers, scissors, needles, pens, pencils, etc. or putting keys in keyholes.When I'm driving the car, my hands become completely numb after holding the steering wheel for just a few minutes. I think everybody reacts differently.

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Feb 18, 2018 12:51 am

Did my hill walk today with husband and friends, 2.25 miles. Moving is actually easy part, I find sitting and standing up uncomfortable, incision needs to stretch out. Got to eat a butter leaf salad, first yummy fresh salad since surgery. Wow.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Feb 23, 2018 8:09 pm

retiredteacher wrote: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

Hi Terri,

Wondering how your surgery went? How you are doing?

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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Feb 23, 2018 8:42 pm

Okay today was not pretty. Home health nurse came, oversaw changing of the bag. I am getting quick at it. My stoma continues to get smaller, had to return some precut barriers that nurse had ordered. Anyway about an hour after she left I got up and felt something wet on my leg. My bag was open and leaked on clothes, yuck.
Cleaned up myself, bag, closed it tight and changed close. Emptied it again after lunch. A few hours later, same thing. What a mess. I though initially I had forgot to close it in my haste but not twice in the same day, I have never done that before. So has anyone ever had a bad bag? Seemed like velcro didn't catch and hold?
Could live without this excitement. Glad I was home for both occurrences, and alone.
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

User avatar
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 23, 2018 11:22 pm

Caat55 wrote:... So has anyone ever had a bad bag? Seemed like velcro didn't catch and hold? ...

Could you give more information about your bag? Was it a one-piece bag, or a two-piece bag? Where did it fail? Near the skin? Between the two pieces? At the bottom end of the bag?

I stopped using the bags with velcro closures. I found the ones with a mechanical clip at the bottom to be more secure.

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Feb 24, 2018 11:38 am

At the Velcro. I might have missed it in my haste of changing bags but I didn't do it twice. Anxious about the whole bog of them now.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Feb 25, 2018 3:06 pm

It is crazy how good walking feels. Hiked to the top of our hill today with hubby and dog, did it solo two previous day with dog. Today I walked two miles through the vineyards, so quiet. I thought about experimenting with my stamina to work all day by spending a day or two in the tasting room. I can't probably lift a case of wine but opening bottles, chatting and tasting ... that's a piece of cake. Also I can walk to the tasting room, my real job involves multiple in and out of car as I go from school site to school site to see kids. Also a 50 minute trip through country roads to get there. Cars are the most uncomfortable places. Does anyone else experience the same thing?
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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Feb 25, 2018 3:16 pm

Today I was in the forest for almost four hours, walking in deep snow with the kids and my two dogs. We also made a bonfire and baked fish and bananas. Walking and dancing are the things that make me feel good. I do some dancing excercises and strenght every evening. Tomorrow I will be back to work as well, after four weeks «vacation».

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Feb 25, 2018 10:05 pm

I wouldn't consider the last four week vacation. I have two more off because of the physical nature of my job. Kind of glad as I will get one of the infusions in before going back. May try to string it out a bit so I can have a week with my daughter when she comes home from New York.
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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