received port

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AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: received port

Postby AppleTree » Wed Sep 06, 2017 10:14 pm

I just got my port recently too. After all the blood testing I have been through (58 days in the hospital last summer), the port is so much easier! No failed IV lines. No multiple pricks. I am so happy I have it, early in the Folfox game. I had to go to hospital on Saturday for 2 hours of IV fluids and it was easy.

I 2nd seatbelt issues. Also, first week I did not sleep on that side and slept with a pillow under my arm. Maybe my main problem is keeping my family from hugging me too tightly on that side!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: received port

Postby horizon » Wed Sep 06, 2017 10:32 pm

Soreness is definitely not unexpected. I was sore for days after I got mine in. It annoyed me sometimes but when I was getting an infusion, a CT scan, or a blood draw I loved my port.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: received port

Postby Robino1 » Wed Sep 06, 2017 10:54 pm

For the seatbelt I used a black large clip (office supply to clip a lot of papers together) and clip the seatbelt to my shirt sleeve. It kept it from sitting on my port.

I got the port in June. Just recently I've not been using the clip and have not had problems with any pain. I also don't worry too much about it when getting/giving hugs anymore.

I was so afraid of anything touching it. I would only pat it when showering. I can now lightly wash that area instead of just patting it. I still use the numbing cream before treatments. That fear of pain just won't go away yet.

It takes a while to get used to it.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: received port

Postby Aqx99 » Thu Sep 07, 2017 1:27 am

It took me about a month to finally not notice my port. Until then I was feeling a sort of heavy feeling where it is. I guess it was all of the damaged tissue healing. I love my port. I slather on the lidocaine cream before an infusion and don't feel a thing when they insert the needle. I use a clip on my seat belt to keep it off the port. I actually clip the shoulder portion to the lap portion in such a way as to keep the lap portion off my stoma and the shoulder portion off my port.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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susie0915
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Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: received port

Postby susie0915 » Thu Sep 07, 2017 7:52 am

Yes, not having a port can be an issue. There were a couple of times getting a vein was a problem. Since I only had six infusions 3 weeks apart I decided to try without the port otherwise I would've had the port. I know they can do all your bloodwork through the port also which is good because it is done once a week. I had a picc line when I was in the hospital for 3 1/2 weeks for my blockage and it sure made it easier to get blood draws, iv's etc. Again, good luck with your chemo and upcoming scans.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: received port

Postby Shana » Thu Sep 07, 2017 11:10 am

tmberwoof wrote:Thank you for the advice on the shoulder strap. i vaguely remember the ride home from the hospital but i do remember the shoulder strap hitting right on bandages covering the port. strange looking in the mirror and seeing the small bulge/bump in my neck where the tube is at. haven't removed the bandage completely but can see just below the edge of the bandage.
am glad your scare turned out to be no worries. Lee.
I know sometimes the little worries sometimes turn into big problems, and the big worries turn to be little or nothing.


Also thank you for the reminder of the constipation,gonna have to remember to take the softener, which i hate taking anyway.

i also think the reality of cancer in my body is starting to hit home with me, even more so as the days/weeks go by. right now i am denying it my own head even though i talk about it to certain people.

i am also going to take note book with me pretty much everywhere i go and start writing things down. i am starting not to remember certain things like appointments and different thing people tell me. i am not certain how or if that ties into my mindset right now . or if it is a different problem. but probably talk to someone else about this as it seems to be occurring more and more frequently.

Tmberwoof


stage 4 colon cancer living in my liver


Hi Tmberwoof,

Good luck with your treatment! You shouldn't expect to remember everything, there's so much going on in your head right now that I think it's a natural reaction but certainly a good idea to discuss with your doctor to quell any anxiety you might have. I enter appointments into my phone calendar and still reconfirm them just in case.

I've had two ports, the first one was removed when I was hospitalized with an infection and they wanted to rule it out as a possible contaminant. I had one chemo treatment in my arm which was so painful that I immediately scheduled an appointment to have second power port inserted.

For some reason the second one has seated better and was inserted higher which is easier to access around clothing. I embrace my port because it cuts down on weekly IV and it was truly a blessing when hospitalized and when I had surgery.

I barely notice my port unless I look in the mirror. I look forward to the day when none of us will need a port because we're NED!

Best wishes,

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
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

tmberwoof
Posts: 11
Joined: Sat Aug 05, 2017 11:08 pm

Re: received port

Postby tmberwoof » Fri Sep 08, 2017 11:22 pm

yes looking at the tubing in my vein was awkward and strange at the very least. and when the bandage came off i didn't want to look at where the port had been placed as i don't like to look at fresh wounds to my own body. when i eventually looked, it wasn't as bad as i had thought. the bruising is bigger than i had thought, but its seems to be clearing up some now. i will try to remember the ELMA cream. what is ELMA acronym for? I do have 2 scripts for nausea. so hopefully i will be able to eat something. i was also told the chemo session will be 600 minutes. that 5 hours ( i am fairly good at math :lol: ). so i plan on trying (trying is the key word here) to read a book or concentrate on playing poker on my phone, anything that will help me keep my mind off of whats really going on.

I bumped the port spot the other day and thought i was going to jump through the roof, as it is still very tender, and i am always aware of the tube in my neck. I have been assured that in a few weeks i will not even be aware of it anymore, which i find difficult to believe at this time.

Although, i was told i could take a shower with water not hitting directly on the surgery, i think i will still take "bird baths" until i can confidently feel it is safe shower.

also, since i live 90 miles away from my therapy sessions, i was able to secure housing while am there.


Tmberwoof

stage 4 liver cancer living in my liver
April 17 2017 dx colon cancer stage 1+ n0m0
April 18 2017 bowel resection of 12"
July 28 2017 dx mets to the liver now stage 4
Sept 5 2017 power port inserted
Sept 13 2017 chemo begins FolFox 5Fu with Avastin

stage 4 colon cancer living in my liver

tmberwoof
Posts: 11
Joined: Sat Aug 05, 2017 11:08 pm

Re: received port

Postby tmberwoof » Sat Sep 09, 2017 12:07 am

By the way I have a Q and A with the doc on Sept 12 and will be informed of my scheduling for the next 4 to 6 months while undergoing the treatment (although this will
NOT be a treat) as well as a chat with a nutritionist, then on wed. 13 i start my chemo session. follow up on Fri 15 i get my pump removed. Happy! Happy! Joy! Joy!


Tmberwoof

stage 4 colon cancer living in my liver
April 17 2017 dx colon cancer stage 1+ n0m0
April 18 2017 bowel resection of 12"
July 28 2017 dx mets to the liver now stage 4
Sept 5 2017 power port inserted
Sept 13 2017 chemo begins FolFox 5Fu with Avastin

stage 4 colon cancer living in my liver

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: received port

Postby benben » Sat Sep 09, 2017 10:05 am

When in the passenger seat I just tuck the upper strap of the seat belt under my right arm.
Then there is no interference with the port. Works like a charm.

Best wishes with your treatments.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: received port

Postby Volfan » Sat Sep 09, 2017 1:32 pm

Don't be surprised if you do a lot of sleeping during treatment.
I will be in the middle of a conversation sitting up then fall asleep and wake up after slobbering all over my shoulder.
My biggest thing I ask my wife when she picks me up is to be with me while walking to the car.
The premeds have me acting like a drunk person. I stumble everywhere and chat everyone up on the way out. My wife actually gets a kick out of this.

Keep the doctor on call number handy. If you have any issues call. Don't sit there with nausea for two days thinking this is just part of it like I did.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: received port

Postby Lee » Sat Sep 09, 2017 2:19 pm

I always ate an egg breakfast sandwich on the way to chemo. I found if I kept food in my stomach, it kept nausea at bay. Also ginger, as in ginger snap cookies, or ginger ale is good for knocking back nausea. I tended to eat several small meals vs 3 meals a day to be helpful.

I was told to drink Ensure daily, butt I believe they have better supplement drinks out there today.

I found the days of disconnect and the day following disconnect to be the worst days. There were a few times especially toward the end of treatment when going from sofa to freezer to micro to table was a major struggle.

Remember one cycle at a time.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: received port

Postby Volfan » Sat Sep 09, 2017 2:42 pm

Lee wrote:I always ate an egg breakfast sandwich on the way to chemo. I found if I kept food in my stomach, it kept nausea at bay. Also ginger, as in ginger snap cookies, or ginger ale is good for knocking back nausea. I tended to eat several small meals vs 3 meals a day to be helpful.

I was told to drink Ensure daily, butt I believe they have better supplement drinks out there today.

I found the days of disconnect and the day following disconnect to be the worst days. There were a few times especially toward the end of treatment when going from sofa to freezer to micro to table was a major struggle.

Remember one cycle at a time.

Good luck,

Lee


Two egg mcmuffins and an orange juice every time on the way to treatment.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: received port

Postby Lee » Sat Sep 09, 2017 2:57 pm

Volfan wrote:
Lee wrote:I always ate an egg breakfast sandwich on the way to chemo. I found if I kept food in my stomach, it kept nausea at bay. Also ginger, as in ginger snap cookies, or ginger ale is good for knocking back nausea. I tended to eat several small meals vs 3 meals a day to be helpful.

I was told to drink Ensure daily, butt I believe they have better supplement drinks out there today.

I found the days of disconnect and the day following disconnect to be the worst days. There were a few times especially toward the end of treatment when going from sofa to freezer to micro to table was a major struggle.

Remember one cycle at a time.

Good luck,

Lee


Two egg mcmuffins and an orange juice every time on the way to treatment.


Great minds think alike :wink:

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

tmberwoof
Posts: 11
Joined: Sat Aug 05, 2017 11:08 pm

Re: received port

Postby tmberwoof » Sat Sep 09, 2017 10:40 pm

Raunchy Ronnies (AKA Micky D's) breakfast always did a good job of cleaning out my system. I would grab a McMuffin on the way to school, by the time i got there, about 10 minutes, i was ready to hit the head. The place I am stating at has a fridge and full kitchen, so i will prolly try to take my cocoa pebbles with me as well as a few other food items. Was Sitting here and wondering if salty corn chips (Sanatos) would work out for me. worth a try i suppose. More than likely I will trying about 100 different types and kinds of food till i can get something that works or tastes good for me.

I got out from the house today as the weather was very nice. Went into the mountains and walked around looking for quartz and some other types of 'ites. Living in Verde Valley Az., there are rocks here that can not be found anywhere else in the world, which makes this a unique place to live and rock hound. I just hope that i still have the same interest at the end of this treatment as I do now.

Tmberwoof
April 17 2017 dx colon cancer stage 1+ n0m0
April 18 2017 bowel resection of 12"
July 28 2017 dx mets to the liver now stage 4
Sept 5 2017 power port inserted
Sept 13 2017 chemo begins FolFox 5Fu with Avastin

stage 4 colon cancer living in my liver


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