Surgery scheduled, clinical study for Lifeseal, questions about recovery

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Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Mar 02, 2018 9:43 pm

I got the port in yesterday. It is pretty awkward, difficult to turn my head because of the tape. I was told I could resume normal activities after 24 hours but saw cautions on web about reaching overhead, lifting more than 10 pounds. Anyone with insight? I was also told not to let water get on it directly. It kind of scares me, in my jugular and in my chest.

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

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Atoq
Posts: 229
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Mar 03, 2018 3:56 am

I got a cannule in the jugular both time I had surgery and I think it was worse than the colostomy :evil: especially because of the pressure on the side of the troath that gave me nausea and the plaster which made it difficult to turn the head. But I thought the port was more towards the chest.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

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Robino1
Posts: 451
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Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Sat Mar 03, 2018 8:42 am

Caat55 wrote:I got the port in yesterday. It is pretty awkward, difficult to turn my head because of the tape. I was told I could resume normal activities after 24 hours but saw cautions on web about reaching overhead, lifting more than 10 pounds. Anyone with insight? I was also told not to let water get on it directly. It kind of scares me, in my jugular and in my chest.

Susan


They had a plastic patch over mine after I got it placed so I could shower. Definitely don't raise arms over your head. You can still shampoo with your hands. Elbows level with the incision area. After a couple of weeks it all settles in.

At first I would gently just pat the port area when showering. After having it now months later, I just wash as normal.

Did you get lidocaine to numb it when they do the infusions? If not, ask for it. Just put a dab on and cover with a small piece of plastic wrap to protect your clothing. Do that an hour before going and getting your chemo. Don't rub it in, just a small amount and just cover the port only. Makes it painless when the insert the needle for chemo.


Ask your doc when you can get it wet. It shouldn't be very long. I can't remember exactly how long it was. I had my port placement on a Monday, PET scan (had to keep arms at my sides) 2 days later, first infusion that Thursday. They removed the initial covering for the infusion.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Mar 03, 2018 1:29 pm

The bandage on my neck is limiting. The port is below my about 4 inches below clavicle Claudia and today it is bruised looking. Made the mistake, tried to be tough, and didn't take any ibuprofen or Tylenol yesterday, my husband was kind of freaked out by my lack of sprunk when he got home. But I was spinning like a top yesterday morning, got a ton of ideas on paper for spring and summer at our Winery. It was so strange, my brain was raving. Today I will take some pills, putter.
Robino they told me I could resume normal activities but it's so stiff even brushing my hair is a challenge. I will definitely go with your advice!!
Claudia, just how cold is it?
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

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Shana
Posts: 371
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Sat Mar 03, 2018 7:38 pm

I have had two ports so far. I think I showered about 5 days after and covered it with plastic. I chose not to shower when I had the pump hooked up to it but I only had the pump for one session. First port was removed when I was in the hospital because they wanted to rule it out as source of my infection. I don't think they ever figured out what caused it and probably was not the port. The second port was placed higher and I've had it for about a year but it didn't feel "part of me" for about a couple of months. I barely know it's there now though sometimes I get this achy feeling where the tubing lies. I mentioned it to the nurses and they said that was a common complaint. Sometimes I put heat on my neck which makes it relax. I think you should baby it as much as necessary.

Good luck with your upcoming chemo... we know it's not fun but hopefully you will be as comfortable as possible!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue Mar 06, 2018 12:59 am

I am getting used to the port. Tried a Mio bag this past week, best wear time, comfort, ease. These vents always stop working though, doesn't matter which company.
My skin on, around area that was irradiated is sore, painful again since surgery in January. Gabapentin helps, nothing else touches it, makes me think of my patients with shingles pain.
I gave all my friends who had been helping us out, post op dinners, shopping, etc. Little tins of the Cannabis cream. It's a hit, the other therapists at clinic especially loved it.
Hate this butt skin pain, only thing bugging me.
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

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

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

Postby O Stoma Mia » Tue Mar 06, 2018 1:11 am

Caat55 wrote:... Hate this butt skin pain, only thing bugging me...

There are several old threads on butt pain. Here is one of them:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48881&p=371839#p371839

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Mar 07, 2018 9:54 pm

I saw my oncologist today and the Cancer Center teaching nurse to learn about the Oxaliplatin. The oncologist is still concerned about my anemia. I am going to work on it for the couple weeks as I start chemo on the 22nd. He is planning on 6 rounds for now.
In the interim, I am going to enjoy a margarita, a cold beer and ice cream. We have a huge Irish Days event here in our town, Murphys, our little town of 2000 grows by about 10,000 folks. It's a prechemo celebration before it gets rocky.
I got the scrips for the nausea meds and the Xeloda.
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

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Shana
Posts: 371
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Thu Mar 08, 2018 12:46 am

Caat55 wrote:I saw my oncologist today and the Cancer Center teaching nurse to learn about the Oxaliplatin. The oncologist is still concerned about my anemia. I am going to work on it for the couple weeks as I start chemo on the 22nd. He is planning on 6 rounds for now.
In the interim, I am going to enjoy a margarita, a cold beer and ice cream. We have a huge Irish Days event here in our town, Murphys, our little town of 2000 grows by about 10,000 folks. It's a prechemo celebration before it gets rocky.
I got the scrips for the nausea meds and the Xeloda.


Sounds like an excellent plan! You know so much more about all of this than I did a year ago when I started chemo. It is so much better to be informed and know what to expect. The doctors can't tell you as much as everyone here who has personally experience.

Good luck and have a great St Pat's Day!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: Chemo scheduled to start March 22

Postby O Stoma Mia » Thu Mar 08, 2018 1:30 am

Caat55 wrote:... I start chemo on the 22nd. He is planning on 6 rounds for now...
I got the scrips for the nausea meds and the Xeloda.

I have a few questions about your upcoming chemo:
- Are your oxaliplatin infusions being done at Stanford (several hours away), or at your nearby facility (less than an hour away).?
- How many oncologists do you have? One at Stanford and another one at your nearby facility?
- Who is in charge of doing and evaluating your bloodwork for each new cycle? Stanford or your local hospital?
- Who will you contact if you have a problem during a cycle? Where will you go if you need urgent medical attention during a cycle?

Good luck on your first round!

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Chemo scheduled to start March 22

Postby Caat55 » Thu Mar 08, 2018 1:39 am

O Stoma Mia wrote:
Caat55 wrote:... I start chemo on the 22nd. He is planning on 6 rounds for now...
I got the scrips for the nausea meds and the Xeloda.

I have a few questions about your upcoming chemo:
- Are your oxaliplatin infusions being done at Stanford (several hours away), or at your nearby facility (less than an hour away).?
- How many oncologists do you have? One at Stanford and another one at your nearby facility?
- Who is in charge of doing and evaluating your bloodwork for each new cycle? Stanford or your local hospital?
- Who will you contact if you have a problem during a cycle? Where will you go if you need urgent medical attention during a cycle?

Good luck on your first round!


My surgeon is at Stanford. I got a second opinion from an oncologist at Stanford as well for my piece of mind and he concurred with local oncologist. I am now seeing only the local oncologist who is only about a little over 30 minutes away. He writes all the orders, reviews lab work. If I need urgent medical care I will go to same hospital as my oncologist. They have an urgent car clinic 15 minutes away too but I think I would prefer going straight to the cancer center. They are moving into a beautiful new building in a little over a month, cancer center with then be off site of hospital.
Even in a big city it could take over a half hour to get to a hospital in an emergency, let's hope I don't need to go.

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

retiredteacher
Posts: 73
Joined: Sat Oct 21, 2017 1:34 pm

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

Postby retiredteacher » Mon Mar 12, 2018 2:28 pm

Susan I am right down the hill from you between Linden and Valley Springs, in the walnuts. LOVE Murphys!
63 yo female
RC 9/13/17 Adenocarcinoma 6.3 - 7 cm tumor (PET)
6 cm, or maybe 8 - 10 cm fr AV (PET)
G2: Moderately differentiated (Path rprt), MSS
Unstaged, guesstimate T3N0M0 PET, no MRI, no ultrasound
2500 Capecitabine/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 0.3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Mar 12, 2018 3:46 pm

You were down in the pink snow, my children used to call the almond blossoms on the ground pink snow. Yes, Murphys is wonderful. We have the huge Irish Days celebration this weekend. Such a small community, we all share in the event. I have street closure duty and pouring beer planned. I put off the start of my chemo until next week to enjoy time with my daughter who is home from New York and to enjoy Irish Days.

I am so happy so you and your surgical outcome!!!!
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Mar 12, 2018 3:47 pm

retiredteacher wrote:Susan I am right down the hill from you between Linden and Valley Springs, in the walnuts. LOVE Murphys!

You were down in the pink snow, my children used to call the almond blossoms on the ground pink snow. Yes, Murphys is wonderful. We have the huge Irish Days celebration this weekend. Such a small community, we all share in the event. I have street closure duty and pouring beer planned. I put off the start of my chemo until next week to enjoy time with my daughter who is home from New York and to enjoy Irish Days.

I am so happy so you and your surgical outcome!!!!
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Mar 12, 2018 3:51 pm

I spoke to the chemo nurse this morning. I have an 8:15 start time on the 22nd for my first infusion. I am supposed to plan on about 5 hours. There is a heavy duty nausea medicine first that takes 45 minutes, then a 30 minute mineral cocktail, then the infusion, then the second half of the mineral cocktail. The nausea meds work for about 2 or 3 days. The mineral stuff according to the doctor is a possible treatment for the peripheral neuropathy, the jury is still out on it but he feels there is no harm from it so give it a try. As my hands are my profession I am willing to try unless someone knows anything about it that is negative.

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


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