What should I expect for port placement???

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boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: What should I expect for port placement???

Postby boxhill » Tue Jun 19, 2018 4:40 pm

From what I have read here and elsewhere it is pretty clear that Xeloda/capecitabine has significantly worse side effects than being infused with 5-FU for many if not most.

Although I apparently had more discomfort immediately after the port installation than most, I personally would NEVER choose to take Xeloda instead, or hold back on chemo because of having to have a port. Theoretically, you can have infusion via IV, but I have lousy veins, and no way am I subjecting myself to that on a regular basis, not to mention the scar tissue which tends to build up. The port just isn't that big a deal, really.

If you are worried about the pain, ask them to give you a small amount of oxycodone. I did.

Of course, it is your body and your choice.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
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weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: What should I expect for port placement???

Postby weisssoccermom » Tue Jun 19, 2018 5:05 pm

You are correct that Xeloda has a much higher chance of hand/foot syndrome than infused 5FU but studies have shown that overall, people tolerate Xeloda much better than infused 5FU.

I've had both and can only speak for myself but when I was on 5FU I felt TERRIBLE. The leucovorin exacerbates the side effects of 5FU. I was nauseous on 5FU, I felt miserable, fatigued and overall, especially with the pump, I hated it. If your onc is diligent and tells the patient to be careful about folic acid on Xeloda (i.e. in this country our grains are fortified with folic acid so be careful about overloading on carbs), GI issues are way milder. Most people who don't tolerate Xeloda don't do well because of the hand/foot syndrome and for many, you can stop/minimize the problem before it starts.

I can speak to both drugs as I have taken both. IMO, no way would I ever do the infused 5FU again. Regardless of what you choose, your onc should offer you both options and let the patient make the choice.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What should I expect for port placement???

Postby NHMike » Tue Jun 19, 2018 5:21 pm

boxhill wrote:From what I have read here and elsewhere it is pretty clear that Xeloda/capecitabine has significantly worse side effects than being infused with 5-FU for many if not most.

Although I apparently had more discomfort immediately after the port installation than most, I personally would NEVER choose to take Xeloda instead, or hold back on chemo because of having to have a port. Theoretically, you can have infusion via IV, but I have lousy veins, and no way am I subjecting myself to that on a regular basis, not to mention the scar tissue which tends to build up. The port just isn't that big a deal, really.

If you are worried about the pain, ask them to give you a small amount of oxycodone. I did.

Of course, it is your body and your choice.


I haven't seen worse side-effects from Xeloda over 5FU in my reading of experiences with Xeloda. It may also be that the spreading out of the 5FU over two weeks means a less concentrated does that you get with the pump.

I had Xeloda and radiation for 28 days for Neo-Adjuvant and didn't see any side-effects from Xeloda outside of the awful numbers on my bloodwork. This is me on my 27th day on Xeloda and Radiation: https://www.youtube.com/watch?v=R_ipaq4HTk0&t=495s (I'm in the foreground). I also worked through Xeloda and radiation.

I also had Xeloda for Adjuvant Chemo and the main side-effect for me was the Neuropathy (tingling), arthritis feelings in my hands and feet and awful-looking skin on my fingers and toes. The Adjuvant does is at a higher dose for a longer overall period of time. I also worked through Xeloda and Oxaliplatin chemo for six months.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What should I expect for port placement???

Postby NHMike » Tue Jun 19, 2018 5:27 pm

weisssoccermom wrote:You are correct that Xeloda has a much higher chance of hand/foot syndrome than infused 5FU but studies have shown that overall, people tolerate Xeloda much better than infused 5FU.

I've had both and can only speak for myself but when I was on 5FU I felt TERRIBLE. The leucovorin exacerbates the side effects of 5FU. I was nauseous on 5FU, I felt miserable, fatigued and overall, especially with the pump, I hated it. If your onc is diligent and tells the patient to be careful about folic acid on Xeloda (i.e. in this country our grains are fortified with folic acid so be careful about overloading on carbs), GI issues are way milder. Most people who don't tolerate Xeloda don't do well because of the hand/foot syndrome and for many, you can stop/minimize the problem before it starts.

I can speak to both drugs as I have taken both. IMO, no way would I ever do the infused 5FU again. Regardless of what you choose, your onc should offer you both options and let the patient make the choice.


In some cases, insurance coverage dictates 5FU. The XELOX pills are insanely expensive in the US. Generic might be a lot less - I didn't look into that. One other advantage of XELOX is modulation. If you are having problems due to the XELOX, you can simply stop taking them.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: What should I expect for port placement???

Postby weisssoccermom » Tue Jun 19, 2018 5:45 pm

When I was taking Xeloda, yes, it was EXPENSIVE but back then, there were no restrictions from the insurance companies. Nowadays, with a generic form of Xeloda, I don't think any insurance companies have an issue with this option. I have heard, however, than some insurance companies require the patient to purchase the generic form from their mail order pharmacy as opposed to your local pharmacy.

In the 11+ years that I have been on this board, what I've taken away is that the hand/foot syndrome is the only side effect that is worse for most people. That being said, some people just don't like taking pills, don't want to remember to take them, etc and for those people, infused 5FU is the best option. On the other hand, I'm also aware that most people who do like Xeloda really like the feeling of not being tethered to the pump (me....I HATED that) and not being so conspicuously sick. Somehow with Xeloda there is this mental/psychological aspect that you are taking back some control of your life as opposed to having all the control taken away from you.

Each person has his/her own opinion and no one is wrong. I couldn't make a determination regarding one over the other solely based on what I had read. In my case, I did do both and can speak, from my perspective, which option I would choose if I had to do it again.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What should I expect for port placement???

Postby NHMike » Tue Jun 19, 2018 6:30 pm

weisssoccermom wrote:When I was taking Xeloda, yes, it was EXPENSIVE but back then, there were no restrictions from the insurance companies. Nowadays, with a generic form of Xeloda, I don't think any insurance companies have an issue with this option. I have heard, however, than some insurance companies require the patient to purchase the generic form from their mail order pharmacy as opposed to your local pharmacy.

In the 11+ years that I have been on this board, what I've taken away is that the hand/foot syndrome is the only side effect that is worse for most people. That being said, some people just don't like taking pills, don't want to remember to take them, etc and for those people, infused 5FU is the best option. On the other hand, I'm also aware that most people who do like Xeloda really like the feeling of not being tethered to the pump (me....I HATED that) and not being so conspicuously sick. Somehow with Xeloda there is this mental/psychological aspect that you are taking back some control of your life as opposed to having all the control taken away from you.

Each person has his/her own opinion and no one is wrong. I couldn't make a determination regarding one over the other solely based on what I had read. In my case, I did do both and can speak, from my perspective, which option I would choose if I had to do it again.


We're required to buy it from a mail-order pharmacy and the first seven or so usually took three to five hours to get the order straightened out in multiple calls. Some people like one and some the other (as in prefer - I don't think anyone likes either).
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: What should I expect for port placement???

Postby Caat55 » Tue Jun 19, 2018 7:14 pm

I do a lot of driving so my port is on my right, when a passenger, I have a little pillow they gave me at hospital. I was talking to the nurse and then all of a sudden it was over, asleep and quick. I was groggy that day and hospital required a driver. It doesn't feel like anything most of the time unlessI bump it, I am more careful with tools, lifting on that side. I am glad to have it and not drugs in my veins.
S
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: What should I expect for port placement???

Postby Tdubz » Tue Jun 19, 2018 9:29 pm

I was knocked out when I had my port inserted and removed. I didn’t use any pain killers and I was fine. I iced it down the first two days or so. The skin in that part of the body doesn’t really move or stretch much so you don’t get much pain from movement. The worst part of the port for me was just getting used to the big bump on my chest.

The benefits of the port are awesome though. I’ve seen people getting infusions without a port and it looks miserable. Blood draws are fast and easy too.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What should I expect for port placement???

Postby NHMike » Tue Jun 19, 2018 9:31 pm

I haven't been able to do some of my favorite exercises: dips and pullups. Heavy weight bearing on the side with the port is not recommended.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: What should I expect for port placement???

Postby MDK » Wed Jun 20, 2018 4:17 pm

I held out on port placement until Folfox destroyed my veins. Everyone told me what a piece of cake it would be to have a port. Within two months my port failed - my skin began to recede and I could see the port. Removed - now I am being encouraged to have another one placed. Another horrid scar. The surgeon that placed my port said mine was the only one be ever had fail (do I believe that? No.) I asked the surgeon if there was any guarantee the second one would not fail. No.

Proceed with caution.
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

KatDaz
Posts: 16
Joined: Mon Jun 18, 2018 7:54 pm

Re: What should I expect for port placement???

Postby KatDaz » Mon Jun 25, 2018 5:21 pm

Ok so i had my port placed last Thursday and I was put out with general anesthesia as i requested. Overall yes the procedure went well. I am quite tender and uncomfortable on my right chest area and side though. I am told that will subside. I had my first treatment today and it was a long day but that part is done.

I appreciate all the support and information received to help me with my anxiety about the procedure.

Sincerely
Kathie
Via ER had CT scan on 4/4/2018 that showed mass in colon that nearly broke through
Date of diagnosis: 4/5/2018 with surgery performed this day to remove 3.2 cm tumor - stage 2A
Colonoscopy on 6/15/2018 - all clear, he asked how does normal sound!!! :D
Power Port placed on 6/21/2018
Chemo started 6/25/2018 Folfox
Started with Neulasta now given Neupogen

User avatar
horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: What should I expect for port placement???

Postby horizon » Tue Jun 26, 2018 8:06 pm

KatDaz wrote:Ok so i had my port placed last Thursday and I was put out with general anesthesia as i requested. Overall yes the procedure went well. I am quite tender and uncomfortable on my right chest area and side though. I am told that will subside. I had my first treatment today and it was a long day but that part is done.

I appreciate all the support and information received to help me with my anxiety about the procedure.


Glad you made it through it ok. I wouldn't even consider getting a port at first. My first chemo was a fiasco. They just could not get the IV started after multiple attempts and I hate needles. I changed my mind quickly. I have zero regrets about getting a port for my chemo. It made things so much easier.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?


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