Power Port & 5FU treatments

mc1717

Hi everybody,

Two things:

1. I had a Power Port put in on 9/17/08. Is it normal to have a have a feeling like chest pain? It is like what I feel if I am outside in really cold weather and breathe through my mouth alot. The pain is located up near top of breast bone. I assume this is where the tube was placed in the vein. The Vicodin helps but it is still there. Doctor said I may have a feeling like this for a couple days, but here it is 4 days later. Other than this the port is ok, no pain anywhere else. When will this pain go away?

2. Starting chemo and radiation on 9/22/08. I would like to hear from anyone that got 5FU with an infusion pump. Plan is for me to have the pump for 24/7 for 5 weeks. What type of side effects can I expect and will I lose my hair( don't really care but just wondering).

What did you do oe take to help minimize the side effects?

Thanks,

Mickey

Buzzard

Veinal Port
Mickey,
I had the exact same Chemo as you are going to have. I took mine through the port as an enhancer for my radiation. It was 24/7 for 5 weeks also. The same as you are going to get, if you drink coffee enjoy it today because it may make you sick tomorrow to smell it. I tolerated the chemo well and no I didn't lose any hair at all. This type is pretty mild and is pretty much for colorectal patients and targets that particular cancer which in what they tell me just doesn't have the side effects that the stronger stuff does. It will change the way you eat or the way things taste. You will adjust to it though. It was more trouble for me to sleep with all that hanging than anything else. What you have to do is realize that it won't come out and I just let the whole tubing loose and placed the fanny pack beside me in the bed and if I rolled up in it it would finally wake me up. It never caused me any hurt but you have to get use to it. I will say it did hurt a little when they put the needle in the port for the first time but its not a big deal after the first time. I am now taking post operative chemo (leucovorin and oxiliplatin with 5fu) now that is a 3 day ordeal and im sick for 3 days then its pretty much over. That will last for 6 months every other Monday. Preventative systemic chemo so I am on the road to recovery and you just have to remember.....Through this entire journey you will go through, don't ever give up and say I can't do any more because you can, and every step is one more to full recovery. Also, look for ordinary days , nothing special just simple days where there are no appointments , shots, Cat or PET scans. Don't count on anything to go like you think it should, its nice when it does but if you count on something and it doesn't come out like you thought it would it is a major downfall, don't lead yourself into that trap, it will keep you upset. Live everyday like its your last, savor every moment outside or doing something pleasurable. You will undertake a world of Drs and Nurses and they all have your best interests at heart. Take your condition and take control of everything that happens to you, I had trouble with a "loss of control" issue and actually making the decisions of my treatments and such gave me back something that I was losing with this disease,"control", it doesn't allow you that, but take it. You do fine with it......Im 53 and was diagnosed in March and have had 24/7 chemo for 5 weeks, 5 week 5 days/week radiation, surgery, and am doing post op chemo now...almost home, you'll be there before you know it....Hang in there , there is a light at the end of the tunnel and its not a train..............

kristasplace

Stay away from the sun!
Hi Mickey, the only major side effect i had with the 5FU was sun damage to my skin. I got pretty serious burns on my hands just from being in the car driving to my treatments! Luckily, a few weeks of coconut butter cured the damage almost completely.

Like Buzzard, i had a hard time sleeping with the pump because i move around during the night, and i would often forget i had the thing attached, and i would get up without it. You're quickly reminded you have it when it tugs you back.

As far as getting accessed? Ask them for a little litocain (sp?) before they insert the big daddy needle into the port. It stings a little, but the one time i let them access me without it, i was sore for many days, so it's worth the little sting the litocain causes.

It took me ages to get used to my port...it itched more than hurt for many, many months. At first, it did hurt for about two weeks. Most people get used to it faster than i did.

The radiation is going to make you very tired, so expect that to happen. Oh, and you won't lose your hair. This dose of 5FU is very minimal...just used to increase the effectiveness of the radiation.

Good luck with your first treatment. Let us know how it goes!

Many hugs,
Krista

butterfly23

Hi, I also had 5fu with the
Hi, I also had 5fu with the pump every other week for 46 hrs, I did not loose my hair but it did thin a bit, I was VERY lucky I had hardly no side affects, except for the tiredness!!! I did not feel any nausea, My skin on my face is a brownish color, I look tanned! I had no problem with the port, and the needle was fine, a big pinch for a second. I consider myself very lucky, it was hard to get used to the cassette. Sometimes you forget you have it until you feel it tug on the tube! I wish you as much success as I had with the 5fu, I have surgery scheduled in a few weeks then more chemo. You will be in my prayers, hang in there, also please stay POSITIVE!!!!!!!! I think that has really gotten me through everything!
God Bless
Karyn

pamness

5Fu and the port
I had a port put in prior to beginning 5FU for 46 hours along with oxaliplatin administered via the port for 2 hours. My port was sore for about two days after they put it in - about 6 months after they took it out. When they "plug you in - you have about 5 seconds of yikes" but that is about it.

I did surgery first, then 8 rounds of 5FU (46 hours) with oxaliplatin and then radiation for 5FU - for 28 days. I found the 5FU the easiest of anything to tolerate. I was IIIA and am currently 15 months ned. Chances are the port hurts because of all the pulling and tugging they do when they put it in. I am assuming the took an xray after the insertion to make sure it is in the right place.

Good luck,

pam

Madre

I lost a lot of weight prior
I lost a lot of weight prior to putting in my port so mine almost erroded through my skin. I use shea butter cream to keep the skin soft. I have since put on weight and that is not a problem anymore. I have lidocain cream I put on before I go for infusion and it numbs the skin then they spay the cold spray too before putting in the needle. I don't feel a thing but I notice a bruise and mild soreness when touched after the needle is removed. I have a small pillow I put next to me and then put the fanny pack with pump on it when I sleep that way my husband doesn't roll over on it and it kind of reminds me that it is there. I'm more afraind of accidently turning the pump off then pulling it out. Good luck to you and keep positive. I think the first few weeks is the hardest to get through but it will get easier.

nudgie

Chest pain
When my port was put in I to had chest pain when I would wake up in the morning, moved around too much and short of breath. Come to find out there was a small puncture in my right lung from inserting the port. I had to have some sort of procedure where they stuck a very small tube in the side of my chest to inflat my lung and then I had to wear this tube looking device for a few days. My lung is 100% healed.

apache4

Love my port
I had mine put in two years ago and not a moment's trouble. Sometimes that area aches a little and they said it is because the port is a "foreign body" and your body tries to get rid of it. One thing about when they insert the needle...when I moved and started to go to Moffitt Cancer Center I found that the reason I had been hurting some before, during insertion, was that not all the nurses held the port while inserting the needle. They need to steady it with thumb and fore finger of left hand (if right handed)and that totally solves the problem.
I also did 16 treatments of 5-fu and Oxaliplatin with the pump on for 48 hours. Someone said to take a shower you can hand the pump outside the shower and that works. I just didn't shower for two days. It depends on what kind of pump you get if it makes any noise. My first one made a whirring sound which made me put it under two pillows at night. The second one I got, here in Fl.with Folfiri, was different and was a plastic bottle which worked on a principle that I do not remember. Anyway, it was much lighter and made no noise.
Good luck to you. The time passes quicker then you think. I only had my hair thin, but was very tired for a couple of days after.

tlsart

Power port and 5fu
Hello
Just felt I should jump in with my two cents worth, although my story is about the same as everyone elses to some degree. My power port ached at first it is located high just under my color bone on the right side because I'm left handed. I was so sore in the shoulder I slept the first few nights proped up in the bed. I did'nt realize you used your shoulder that much to get up and down in the bed till then. Now 9+ months later I don't even know it's there. I had a CAT scan today though and to be sure I would rather have that dye through the port than through my almost non existant veins.Two weeks ago I had a PET and the vein in my hand is still tender from that.
As for the 5FU pump I only had it 46hrs every other week and personally it's a pain in the A__. But as with everything so far you learn to adjust. I just have 5FU with Leocovorin and avastin now,no pump. If these last few nodules would get the heck out of my liver I could get off that.
I pray you will do well and adjust to each new thing that comes your way, cancer is a journey just like life,although most of it's not terribly pleasant.Be Well!! Theresa

jams67

camera
I was bothered by the noise the pump made. To me it sounded like a digital camera and would keep me awake. I tried covering it with a pillow, but that didn't work very well. Finally, I put it in the bedside table drawer. That kept my husband and I from hearing it and we were able to sleep better.
Jo Ann