Port and FOLFOX advice?

[Marylandmaniac]

So doctors have finally decided to consider my cancer as rectal. My tumor is in both and there was a question as to what to call it and how to treat it. But my oncologist says rectal because enough is in the rectal area. After having a special MRI to stage the tumor I am considered 3B right now (T3N2M0). There is a small spot on liver (8 - 9 mm) that one radiologist didn't think was a met but suggested following up MRI in 3 -6 months but another radiologist does think it is a met. SO getting a PET scan on Thursday to hopefully shed some light. So staging could change. I am hoping it doesn't.
Met with the oncologist yesterday who I really like. He is going to propose to the team that I start with 4 rounds of FOLFOX. Reason is even if the PET scan doesn't light up the liver spot it still could be cancer so hopefully the chemo will kill it off and possibly shrink my primary tumor. They would scan me after to see how I responded. At that point I would possibly get radiation to sterilize the lymph nodes and then surgery. If the FOLFOX kills the active lymph nodes then maybe we go straight to surgery. SO still a few unknowns. Then after surgery I would get 4 more rounds of FOLFOX. I have a feeling my surgeon is really going to like this approach because she is participating in the Prospect study which looks at doing 6 rounds of FOLFOX to see if they can eliminate radiation. She started in 2012 and says many of her patients have had complete clinical responses from just the chemo.
So I am looking for advice on the port and FOLFOX. SO far I know from talking to people on here and reading posts that I should wear the bra I typically wear so hey know not to place port under bra strap. Make sure I use the prescribed numbing cream before going in for chemo. Stay ahead of nausea by taking prescription at least an hour before chemo. Any other things that will help reduce side effects or issues with port and chemo? When did you typically notice side effects? I am scared and nervous but also glad that things are starting to happen. I want this unwanted intruder out of me now!

[Pita]

Hi Mary,
Yes for sure wear your bra and tell them to look before they proceed with the port, I was told by my Onc nurse to mention it and she told them prior which type of port to use.
I've never used a numbing medication on my port before chemo, they clean it first and then it's about the same as getting a shot, hold my breath, quick prick, ouch and done.
My first bag at infusion is anti-nausea, second is steroid, third is benedryl, fourth + is chemo drugs. I take 1/2 Ativan prior so I don't go crazy from steroid and will sleep 2-4 hours out of a 6-8 hour infusion day. Go home and eat and sleep for 2 days. Been very fortunate that I experience very little nausea and other side effects.
Best thing for you to remember is: "Reality is never as dark as the places your brain visits in anticipation" and what you read others go through may never apply to you. It's nice to know what to expect but don't expect it.
Good luck and prayers to you...

[BeansMama]

Definitely have the port placed where your bra will not rub etc. The other thing to consider is the car seat belt. Do you drive most? If so where the place it if on the left side doesn't matter because the seat belt will go the other way a majority of the time. If you are a passenger more frequently then you want to make sure the placement works with the seat belt as well.

My Folfox infusions go as folows:

1) standard anti-nausea meds + dexamethazone (steroid)
2) an extra anti-nausea med (Emend)
3) leucovorin calcium (a helper for the chemo drugs) and Oxaliplatin (chemo drug #1) this step takes about 2 hours.
4) a bolus of Flouroucil (5-FU)
5) hooked up to a pump of Flouroucil - I wear the pump for 46 hours and go have it removed after 2 1/2 days.
6) this may not happen for you - I give myself an injection of neulasta 27 hours after my pump was disconnected

[Marylandmaniac]

Hi Mary,
Yes for sure wear your bra and tell them to look before they proceed with the port, I was told by my Onc nurse to mention it and she told them prior which type of port to use.
I've never used a numbing medication on my port before chemo, they clean it first and then it's about the same as getting a shot, hold my breath, quick prick, ouch and done.
My first bag at infusion is anti-nausea, second is steroid, third is benedryl, fourth + is chemo drugs. I take 1/2 Ativan prior so I don't go crazy from steroid and will sleep 2-4 hours out of a 6-8 hour infusion day. Go home and eat and sleep for 2 days. Been very fortunate that I experience very little nausea and other side effects.
Best thing for you to remember is: "Reality is never as dark as the places your brain visits in anticipation" and what you read others go through may never apply to you. It's nice to know what to expect but don't expect it.
Good luck and prayers to you...

Thanks Pita. I didn't realize there were different types of ports. Hopefully all goes well and I don't have any issues with it.
That is a great quote and one I will try to keep in mind. I have a habit of thinking the worse and I am trying to stop that.

[Marylandmaniac]

Definitely have the port placed where your bra will not rub etc. The other thing to consider is the car seat belt. Do you drive most? If so where the place it if on the left side doesn't matter because the seat belt will go the other way a majority of the time. If you are a passenger more frequently then you want to make sure the placement works with the seat belt as well.

My Folfox infusions go as folows:

1) standard anti-nausea meds + dexamethazone (steroid)
2) an extra anti-nausea med (Emend)
3) leucovorin calcium (a helper for the chemo drugs) and Oxaliplatin (chemo drug #1) this step takes about 2 hours.
4) a bolus of Flouroucil (5-FU)
5) hooked up to a pump of Flouroucil - I wear the pump for 46 hours and go have it removed after 2 1/2 days.
6) this may not happen for you - I give myself an injection of neulasta 27 hours after my pump was disconnected

Hi BeansMama,
Yes I do drive most of the time. Right now I am planning on working part time if I feel up to it. I guess I will see how it goes.
I know they said I will go in Wednesday and then back on Friday to get pump disconnected.

[BeansMama]

Definitely have the port placed where your bra will not rub etc. The other thing to consider is the car seat belt. Do you drive most? If so where the place it if on the left side doesn't matter because the seat belt will go the other way a majority of the time. If you are a passenger more frequently then you want to make sure the placement works with the seat belt as well.

My Folfox infusions go as folows:

1) standard anti-nausea meds + dexamethazone (steroid)
2) an extra anti-nausea med (Emend)
3) leucovorin calcium (a helper for the chemo drugs) and Oxaliplatin (chemo drug #1) this step takes about 2 hours.
4) a bolus of Flouroucil (5-FU)
5) hooked up to a pump of Flouroucil - I wear the pump for 46 hours and go have it removed after 2 1/2 days.
6) this may not happen for you - I give myself an injection of neulasta 27 hours after my pump was disconnected

Hi BeansMama,
Yes I do drive most of the time. Right now I am planning on working part time if I feel up to it. I guess I will see how it goes.
I know they said I will go in Wednesday and then back on Friday to get pump disconnected.

Definitely take the seat belt into consideration when having the port placed. I do a Wednesday infusion and a Friday disconnect as well. I found it worked better when I was working still. I got more hours in at work, and had the weekend off to recuperate from the chemo. I was always very tired after disconnect so I had those two days to do plenty of sleeping.

[Marylandmaniac]

Definitely take the seat belt into consideration when having the port placed. I do a Wednesday infusion and a Friday disconnect as well. I found it worked better when I was working still. I got more hours in at work, and had the weekend off to recuperate from the chemo. I was always very tired after disconnect so I had those two days to do plenty of sleeping.

So did you feel really tired on Wednesday or Thursday while you were wearing the pump? I am wondering if I can work those days. How long did the Wednesday infusion typically take? Couple hours? Did you drive yourself or need a ride? I am supposed to take a class of FOLFOX on Tuesday at the cancer center but it is always nice to hear from someone who has actually gone through it.

[LaciK]

I had Xelox (the difference being I took oral Xeloda versus having the 5FU pump).

From what I have heard the port is a very good thing because Oxaliplatin can burn if given through directly through the veins. I have a power port which is also good for CT scans with contrast. I did use the numbing cream the first time I went for chemo. After that, I forgot the next time and it wasn't a big deal - just a quick needle stick so I didn't use it after that.

The entire visit took around 4.25 hours. I saw the doctor first, then they drew blood to check counts and then they proceeded with the infusions.

This time of year you won't need to worry about the cold on the way home, but you may have touch sensitivity to cold. Mine was so acute that I felt like my face and hands had frostbite (it was in the low 50s and windy) by the time I got to the car after my very first infusion on 3/17/16. For me, this is one of those symptoms which got worse each time. I couldn't eat or drink anything room temperature for about a week after the infusion. Even now going to the grocery store, I play "hot potato" getting cold things into the cart and onto the conveyor belt and then it is challenging to put things away once I get home.

I didn't drive myself, but I probably could have if I had wanted to. The steroids made me feel jumpy afterwards (like I was ready to jump out of my skin). My voice was shaky and my hands were shaky if I tried to write. These were temporary symptoms on the day of infusion, but very annoying to me. My infusions were on Thursday and I took Thursday and Friday off and went back to work on Monday (at least for the first couple of infusions).

When my tumor was removed, I had a temporary ileostomy which was reversed on April 22, 2016. After that reversal the issues I had controlling my bms prompted me to mostly stay home. Luckily I was able to work from home (as much as I could around the stomach upsets and the chemo side effects).

I am finally just more than one week post my oral chemo pills after my last infusion and I am beginning to feel better. I am planning to go back to the office next week. The doctor told me that it can take up to two months for me to feel like my normal self following chemo. I am hoping it is sooner rather than later. I'm just done!

I hope the liver turns out to be not an issue for you. Good Luck!

[BeansMama]

Definitely take the seat belt into consideration when having the port placed. I do a Wednesday infusion and a Friday disconnect as well. I found it worked better when I was working still. I got more hours in at work, and had the weekend off to recuperate from the chemo. I was always very tired after disconnect so I had those two days to do plenty of sleeping.

So did you feel really tired on Wednesday or Thursday while you were wearing the pump? I am wondering if I can work those days. How long did the Wednesday infusion typically take? Couple hours? Did you drive yourself or need a ride? I am supposed to take a class of FOLFOX on Tuesday at the cancer center but it is always nice to hear from someone who has actually gone through it.

The infusions on Wednesdays usually ran 4 hours or so by the time they did your labs and started the pre meds. They don't start anything until they are sure your counts are good. If I had an appointment with the onc it added about 45 minutes to the time.

When I was working I was able to connect with a VPN so I brought my laptop with me and worked during my infusion. I usually took Thursday off, Friday was iffy depending how I felt. It was easier in the beginning rounds and got harder for me as time went on.

Eventually I had to stop working because of the fatigue and the amount of pain meds they have me on. It is a policy where I work since we deal with financial reporting and you can't be loopy.

I do not drive myself because my vision blacks out after the infusions as well as the side effects from all my pain meds. It is safer if I am not behind the wheel of a car right now.

[horizon]

So did you feel really tired on Wednesday or Thursday while you were wearing the pump? I am wondering if I can work those days. How long did the Wednesday infusion typically take? Couple hours? Did you drive yourself or need a ride? I am supposed to take a class of FOLFOX on Tuesday at the cancer center but it is always nice to hear from someone who has actually gone through it.

I took off infusion day (Wed) and worked from home Thur and Fri.

I have crazy sensitive skin and always asked for the sensitive skin tape on infusion days. It made a big difference for me.

[Marylandmaniac]

So did you feel really tired on Wednesday or Thursday while you were wearing the pump? I am wondering if I can work those days. How long did the Wednesday infusion typically take? Couple hours? Did you drive yourself or need a ride? I am supposed to take a class of FOLFOX on Tuesday at the cancer center but it is always nice to hear from someone who has actually gone through it.

I took off infusion day (Wed) and worked from home Thur and Fri.

I have crazy sensitive skin and always asked for the sensitive skin tape on infusion days. It made a big difference for me.

Hi Horizon,
I have never heard of sensitive skin tape. What is that? Is it for taping down tubes to the skin?

[Marylandmaniac]

I had Xelox (the difference being I took oral Xeloda versus having the 5FU pump).

From what I have heard the port is a very good thing because Oxaliplatin can burn if given through directly through the veins. I have a power port which is also good for CT scans with contrast. I did use the numbing cream the first time I went for chemo. After that, I forgot the next time and it wasn't a big deal - just a quick needle stick so I didn't use it after that.

The entire visit took around 4.25 hours. I saw the doctor first, then they drew blood to check counts and then they proceeded with the infusions.

This time of year you won't need to worry about the cold on the way home, but you may have touch sensitivity to cold. Mine was so acute that I felt like my face and hands had frostbite (it was in the low 50s and windy) by the time I got to the car after my very first infusion on 3/17/16. For me, this is one of those symptoms which got worse each time. I couldn't eat or drink anything room temperature for about a week after the infusion. Even now going to the grocery store, I play "hot potato" getting cold things into the cart and onto the conveyor belt and then it is challenging to put things away once I get home.

I didn't drive myself, but I probably could have if I had wanted to. The steroids made me feel jumpy afterwards (like I was ready to jump out of my skin). My voice was shaky and my hands were shaky if I tried to write. These were temporary symptoms on the day of infusion, but very annoying to me. My infusions were on Thursday and I took Thursday and Friday off and went back to work on Monday (at least for the first couple of infusions).

When my tumor was removed, I had a temporary ileostomy which was reversed on April 22, 2016. After that reversal the issues I had controlling my bms prompted me to mostly stay home. Luckily I was able to work from home (as much as I could around the stomach upsets and the chemo side effects).

I am finally just more than one week post my oral chemo pills after my last infusion and I am beginning to feel better. I am planning to go back to the office next week. The doctor told me that it can take up to two months for me to feel like my normal self following chemo. I am hoping it is sooner rather than later. I'm just done!

I hope the liver turns out to be not an issue for you. Good Luck!

Hi LaciK,

Thank you so much for the detail description. SO glad you are starting to feel better. IS there a difference between a port and a power port. I always have issues with the IV for the scans because I have to lift my arms up and that seems to pop the line sometimes. SO a power port they could use for that would be nice.
Well the spot did light up but my oncologist still remains very optimistic. He wants to do a biopsy same time as the port. That way they can put a marker on it. He explained that the chemo will hopefully kill off the spot and the marker will allow the surgeon to know where it was. When I go to get my resection of my colon they could also clean up that area. The good thing is other than the spot and my primary tumor nothing else lit up. The nodes had shown activity on the staging MRI did not light up. So still a little confused about that but will take as a good sign.

[Marylandmaniac]

The infusions on Wednesdays usually ran 4 hours or so by the time they did your labs and started the pre meds. They don't start anything until they are sure your counts are good. If I had an appointment with the onc it added about 45 minutes to the time.

When I was working I was able to connect with a VPN so I brought my laptop with me and worked during my infusion. I usually took Thursday off, Friday was iffy depending how I felt. It was easier in the beginning rounds and got harder for me as time went on.

Eventually I had to stop working because of the fatigue and the amount of pain meds they have me on. It is a policy where I work since we deal with financial reporting and you can't be loopy.

I do not drive myself because my vision blacks out after the infusions as well as the side effects from all my pain meds. It is safer if I am not behind the wheel of a car right now.

Hi BeansMama,
Did the vision blackouts happen right away? That sounds scary. My eyes are bad enough so I don't need that.
I didn't even think about bringing my laptop. I will see on Wednesday how things are set up but that is a good idea. I told work that I am going to see how things go and then will update them on what I think I can handle. They are being great about this.

[horizon]

I have never heard of sensitive skin tape. What is that? Is it for taping down tubes to the skin?

So on an infusion day they'll access the port with a needle which has tubing attached to it. They cover that area with a sterile covering and tape it down. When they're done administering the chemo via the tubing/port/etc at the end of the day they remove all of that.

A power port is great because that's one less time you have to deal with people struggling to get an IV started. Just "pop" and it's done.

[BeansMama]

The infusions on Wednesdays usually ran 4 hours or so by the time they did your labs and started the pre meds. They don't start anything until they are sure your counts are good. If I had an appointment with the onc it added about 45 minutes to the time.

When I was working I was able to connect with a VPN so I brought my laptop with me and worked during my infusion. I usually took Thursday off, Friday was iffy depending how I felt. It was easier in the beginning rounds and got harder for me as time went on.

Eventually I had to stop working because of the fatigue and the amount of pain meds they have me on. It is a policy where I work since we deal with financial reporting and you can't be loopy.

I do not drive myself because my vision blacks out after the infusions as well as the side effects from all my pain meds. It is safer if I am not behind the wheel of a car right now.

Hi BeansMama,
Did the vision blackouts happen right away? That sounds scary. My eyes are bad enough so I don't need that.
I didn't even think about bringing my laptop. I will see on Wednesday how things are set up but that is a good idea. I told work that I am going to see how things go and then will update them on what I think I can handle. They are being great about this.

The vision blackouts started with my first infusion, when I mentioned it to my doctor he had never heard of it being a side effect so he brushed it off. It has happened with every infusion since, and never happens off chemo so I can only attribute it to that. The side effects vary from person to person so you may not have an issue with it.

Glad your work is being understanding. Mine has been really great through all of this too.