Port and FOLFOX advice?

[Marylandmaniac]

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.

Well that is good to hear. I am quickly getting over my aversion to needles. Luckily everyone has been really good and while not a good feeling it hasn't been painful. I am nervous about the port being placed but a good friend from here reassured me today that it wasn't bad. I will get Twilight sedation.

[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.

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.

Were the vision blackouts just on the day of infusion but not the days following? I am glad it doesn't happen off chemo.
I think the unknown is scary right now. Not knowing how I will react to this makes it tough to make any plans. Friends are trying to see me but I just tell them to wait so I can see how I get through this first round.

[Lee]

. I am quickly getting over my aversion to needles.

Yea you think nothing of needles after a while. Can't really comment on the port as they have changed /improved since I had one.

Regarding FOLFOX, drink a ton of water 2 days prior to infusion as you will lose it. Don't get dehydrated. Keep food in stomach, ie eat several small meals vs 3 large meals a day to help keep nausea away.

I always got a egg cheese breakfast sandwich on way to infusion. Only eat what you want. if you force something down, you may develop a lifetime aversion to it. I'm so grateful to my chemo nurse. See noticed I was doing that with water. Told me to stop or I would never touch it again. I did stop and I love drinking water today. Once I forced a Boca burger down. Will never touch it again.

Good luck,

Lee

[Pita]

You'll be fine, putting the port in is not a big deal like surgery is, hurt for a few days and that's it, aspirin is enough.

I am quickly getting over my aversion to needles.

Took me awhile but same here though I still can't watch. Can't watch blood being drawn either, could never look at the tubes but now I can. Aren't I lucky

Yes definitely tough to make plans, you may want to be sociable, you may not want to be, just think about you and take care of yourself first, everything else will fall into place once you know your reactions to chemo.
Best wishes...

[BeansMama]

Were the vision blackouts just on the day of infusion but not the days following? I am glad it doesn't happen off chemo.
I think the unknown is scary right now. Not knowing how I will react to this makes it tough to make any plans. Friends are trying to see me but I just tell them to wait so I can see how I get through this first round.

The vision blackouts are the entire time I am on the 5-fu. Like I said it seems that side effect is unusual so the odds are it will not happen to you. It only blacks out for a few seconds then returns, I can see normally otherwise.

Definitely do not make plans until you know how you will tolerate the chemo. You may be one of the lucky ones that has very few side effects.

I know the fear of the unknown is the hardest thing to deal with. You can do this, take it one day at a time. Make sure to let your onc know about any side effects you have and they will do what they can to help manage them.

I will keep you in my thoughts and prayers.

[Marylandmaniac]

. I am quickly getting over my aversion to needles.

Yea you think nothing of needles after a while. Can't really comment on the port as they have changed /improved since I had one.

Regarding FOLFOX, drink a ton of water 2 days prior to infusion as you will lose it. Don't get dehydrated. Keep food in stomach, ie eat several small meals vs 3 large meals a day to help keep nausea away.

I always got a egg cheese breakfast sandwich on way to infusion. Only eat what you want. if you force something down, you may develop a lifetime aversion to it. I'm so grateful to my chemo nurse. See noticed I was doing that with water. Told me to stop or I would never touch it again. I did stop and I love drinking water today. Once I forced a Boca burger down. Will never touch it again.

Good luck,

Lee

Thanks Lee. Yes staying hydrated seems to be a recurring theme. I am going to keep a pitcher of room temp water along with some room temp juices. I have been warned about drinking anything cold. I like the idea of the egg and cheese sandwich.

[Marylandmaniac]

Were the vision blackouts just on the day of infusion but not the days following? I am glad it doesn't happen off chemo.
I think the unknown is scary right now. Not knowing how I will react to this makes it tough to make any plans. Friends are trying to see me but I just tell them to wait so I can see how I get through this first round.

The vision blackouts are the entire time I am on the 5-fu. Like I said it seems that side effect is unusual so the odds are it will not happen to you. It only blacks out for a few seconds then returns, I can see normally otherwise.

Definitely do not make plans until you know how you will tolerate the chemo. You may be one of the lucky ones that has very few side effects.

I know the fear of the unknown is the hardest thing to deal with. You can do this, take it one day at a time. Make sure to let your onc know about any side effects you have and they will do what they can to help manage them.

I will keep you in my thoughts and prayers.

Thank BeansMama,
You were in my prayers today at church. I think about you a lot and your big move and then everything going on in your life.

I think the one day at a time is great advice. I am trying not to get ahead of myself and worry about things that haven't happen.

[BeansMama]

Were the vision blackouts just on the day of infusion but not the days following? I am glad it doesn't happen off chemo.
I think the unknown is scary right now. Not knowing how I will react to this makes it tough to make any plans. Friends are trying to see me but I just tell them to wait so I can see how I get through this first round.

The vision blackouts are the entire time I am on the 5-fu. Like I said it seems that side effect is unusual so the odds are it will not happen to you. It only blacks out for a few seconds then returns, I can see normally otherwise.

Definitely do not make plans until you know how you will tolerate the chemo. You may be one of the lucky ones that has very few side effects.

I know the fear of the unknown is the hardest thing to deal with. You can do this, take it one day at a time. Make sure to let your onc know about any side effects you have and they will do what they can to help manage them.

I will keep you in my thoughts and prayers.

Thank BeansMama,
You were in my prayers today at church. I think about you a lot and your big move and then everything going on in your life.

I think the one day at a time is great advice. I am trying not to get ahead of myself and worry about things that haven't happen.

Thank you Maryland, knowing I have people praying for me helps a lot! The big move is this week so hopefully things will calm down a bit. I'm looking at it as a new chapter in my cancer adventure

One day at a time is definitely the best way to approach this. Try not to borrow worry when there isn't any (I am a worrier too so I know exactly what you are dealing with). I have to tell myself that all the time.

Praying for the best outcome for you!

[Marylandmaniac]

[quote="BeansMama]

Thank you Maryland, knowing I have people praying for me helps a lot! The big move is this week so hopefully things will calm down a bit. I'm looking at it as a new chapter in my cancer adventure

One day at a time is definitely the best way to approach this. Try not to borrow worry when there isn't any (I am a worrier too so I know exactly what you are dealing with). I have to tell myself that all the time.

Praying for the best outcome for you![/quote]


When do you arrive in North Carolina? (I think that is the area right? ) I remember you mentioned you are driving across country.
I like that expression "Don't borrow worry"
And I appreciate the prayers too! Thank you!!!

[BeansMama]

[quote="BeansMama]

Thank you Maryland, knowing I have people praying for me helps a lot! The big move is this week so hopefully things will calm down a bit. I'm looking at it as a new chapter in my cancer adventure

One day at a time is definitely the best way to approach this. Try not to borrow worry when there isn't any (I am a worrier too so I know exactly what you are dealing with). I have to tell myself that all the time.

Praying for the best outcome for you![/quote]


When do you arrive in North Carolina? (I think that is the area right? ) I remember you mentioned you are driving across country.
I like that expression "Don't borrow worry"
And I appreciate the prayers too! Thank you!!![/quote]

Yes we are going to North Carolina, my parents, daughter and I leave the 18th. I get to travel in style (haha) my dad brought the rv out for me because I can't sit for long periods of time. We plan to take our time and stop at least once. My husband will wrap everything up with the moving company and then leave the next day and drive straight through with maybe a short stop for sleep. He actually will probably beat us there. It is about 1100 miles from Texas.

I have an appointment with my new oncologist next week so I can't take too long to get there!

Definitely try not to borrow worry, I know it is easier said than done. I swear if I wasn't losing some of my hair from the chemo I would be losing it from worrying

[Lee]

]
Yes we are going to North Carolina, my parents, daughter and I leave the 18th. I get to travel in style (haha) my dad brought the rv out for me because I can't sit for long periods of time. We plan to take our time and stop at least once. My husband will wrap everything up with the moving company and then leave the next day and drive straight through with maybe a short stop for sleep. He actually will probably beat us there. It is about 1100 miles from Texas.

I have an appointment with my new oncologist next week so I can't take too long to get there!

Definitely try not to borrow worry, I know it is easier said than done. I swear if I wasn't losing some of my hair from the chemo I would be losing it from worrying

I LOVE North Carolina ,

My DB and SIL have a house on the Outer Banks. I remember the first time I went there. Drove past Kitty Hawk on way to Home depot. I'm like is that THE KITTY HAWK, DB is like "yes". If it was not raining so hard I would have made a stink to go back. The next time I was there (Outer Banks), I saw Kitty Hawk. And have several books from the area INCLUDING Kitty Hawk. Beautiful area. Not sure actually where you are going, butt I'm sure it will be BEAUTIFUL. All the best on your road trip .

Lee

[BeansMama]

]
Yes we are going to North Carolina, my parents, daughter and I leave the 18th. I get to travel in style (haha) my dad brought the rv out for me because I can't sit for long periods of time. We plan to take our time and stop at least once. My husband will wrap everything up with the moving company and then leave the next day and drive straight through with maybe a short stop for sleep. He actually will probably beat us there. It is about 1100 miles from Texas.

I have an appointment with my new oncologist next week so I can't take too long to get there!

Definitely try not to borrow worry, I know it is easier said than done. I swear if I wasn't losing some of my hair from the chemo I would be losing it from worrying

I LOVE North Carolina ,

My DB and SIL have a house on the Outer Banks. I remember the first time I went there. Drove past Kitty Hawk on way to Home depot. I'm like is that THE KITTY HAWK, DB is like "yes". If it was not raining so hard I would have made a stink to go back. The next time I was there (Outer Banks), I saw Kitty Hawk. And have several books from the area INCLUDING Kitty Hawk. Beautiful area. Not sure actually where you are going, butt I'm sure it will be BEAUTIFUL. All the best on your road trip .

Lee

Thanks Lee!!

We will be in the Charlotte area, not too far of a drive from most of the good vacation spots from what I have heard. I am so excited to go, I will not miss this Texas heat! I grew up in the Northeast so I will be glad to be closer to my family again not to mention actually having four seasons!!! Fall is my favorite and I have missed it so much!

[Soccermom2boys]

Good luck with your port placement. I found I was very sore for a few days afterwards, like someone used my shoulder as a punching bag, but truly in the big scheme of things, nothing a few days didn't help. I don't mention this to scare you only to let you know it's not abnormal to be sore afterwards for a while is all. Within a week you won't even know it's there unless your hand brushes up against it.

FOLFOX is so different in many ways for everyone so it's tough to say what you will experience--lets hope it's the lesser of all side effects for you. I personally was fortunate to have no diarrhea or nausea issues throughout all 8 rounds--I did get an anti-nausea med (that steroid dexta something) prior to the Oxi and fortunately that was enough. I just felt miserable like that run over by a truck feeling during the treatment weeks--really from the disconnect day and then for a few days afterwards. I did get heartburn which I never have so I took 75 mg Zantac every night before dinner and that helped keep that at bay. And I also strongly encourage the drinking of water (or whatever fluids work for you)--when I struggled at the midpoint and really made a conscientious effort to get a minimum of 8 cups of water/fluids per day, I noticed it helped keep some of that "ugh" feeling at bay. I had one week where I was definitely having a hard time drinking water at room temperature and so when I went on my disconnect day and the day after for my Neulasta shot, I asked for a bag of IV fluids through my port. Don't be afraid to get that extra help if you need it, they would much rather you do that than get hospitalized for dehydration.

I had read enough posts on here regarding FOLFOX so I felt like I went in with my eyes wide open to all of the possibilities from easiest to worst case scenario and for me that was helpful. It is so true that you will get much better information from this board regarding all of the possible side effects rather than what you will get from your onc's office. They may talk the talk, but they haven't walked the walk as we all have and that is a huge difference for painting an accurate picture of what that experience will be like.

Let us know how it is going for you. Reach out with any questions and hopefully someone on here will be able to relate and get you through. This is absolutely a one day at a time endeavor and while the days will feel long, I promise time is moving forward as normal and you will get through this.

[mike1965]

I was afraid of the port but glad I got one it makes getting chemo much easier. I am in 9th folfox treatment. The hardest part for me is the mental part. The chemo messes with my mind. I get angry and depressed but I try to remember that I am trying to kill this evil cancer. I have cold and hot sensitivity, dry skin issues, thinning hair, and just feeling like crap. I am taking a probiotic to help with stomach issues. I also drink around a gallon of water a day. As my treatment has progressed I have worked very little just can not get my mind to be focused. I pray your treatment goes well.

[Marylandmaniac]

Good luck with your port placement. I found I was very sore for a few days afterwards, like someone used my shoulder as a punching bag, but truly in the big scheme of things, nothing a few days didn't help. I don't mention this to scare you only to let you know it's not abnormal to be sore afterwards for a while is all. Within a week you won't even know it's there unless your hand brushes up against it.

FOLFOX is so different in many ways for everyone so it's tough to say what you will experience--lets hope it's the lesser of all side effects for you. I personally was fortunate to have no diarrhea or nausea issues throughout all 8 rounds--I did get an anti-nausea med (that steroid dexta something) prior to the Oxi and fortunately that was enough. I just felt miserable like that run over by a truck feeling during the treatment weeks--really from the disconnect day and then for a few days afterwards. I did get heartburn which I never have so I took 75 mg Zantac every night before dinner and that helped keep that at bay. And I also strongly encourage the drinking of water (or whatever fluids work for you)--when I struggled at the midpoint and really made a conscientious effort to get a minimum of 8 cups of water/fluids per day, I noticed it helped keep some of that "ugh" feeling at bay. I had one week where I was definitely having a hard time drinking water at room temperature and so when I went on my disconnect day and the day after for my Neulasta shot, I asked for a bag of IV fluids through my port. Don't be afraid to get that extra help if you need it, they would much rather you do that than get hospitalized for dehydration.

I had read enough posts on here regarding FOLFOX so I felt like I went in with my eyes wide open to all of the possibilities from easiest to worst case scenario and for me that was helpful. It is so true that you will get much better information from this board regarding all of the possible side effects rather than what you will get from your onc's office. They may talk the talk, but they haven't walked the walk as we all have and that is a huge difference for painting an accurate picture of what that experience will be like.

Let us know how it is going for you. Reach out with any questions and hopefully someone on here will be able to relate and get you through. This is absolutely a one day at a time endeavor and while the days will feel long, I promise time is moving forward as normal and you will get through this.

Thanks Soccermom. Always good to know ahead of time that I will be sore so I don't start worrying that something went wrong. I am supposed to get a treatment the following day so that should be an adventure.
Yes I would much rather look on this board for info. I remember when my surgeon first mentioned the clinical study she was doing which used 6 rounds of FOLFOX first. She made it sound like most of her patients didn't have very severe side effects. And who knows, maybe in her mind it wasn't bad because she has been doing this for 17 years and maybe when she first started it was much worse. She did give me one piece of advice which I think was really good and I try to keep it playing in my head. She said that I need to focus on getting this out of me and not the side effects. That if I ever did have a reoccurrence, I would always regret not doing everything possible to get rid of this. And I know how I am, so I do agree with her on that.