Port or no?

I was given the choice of a PICC line in my arm or a port, they said the PICC line would work out fine since I was only doing three Chemotherapy treatments over the seven weeks.  It worked out fine for me other than taking a shower, having to keep the PICC line covered with plastic wrap so it wouldn't get wet.  

I didn't have to have a PEG put in but it got close near the end of my treatment.  I wasn't really prepared for the weight loss even though they said it was going to drop off me fast so I didn't load up on boost as I should have.  I lived my last few weeks of the treatment on 7 boosts a day and maintained my weight enough that I didn't need the PEG.  

Boost isn't cheap, we have a group near me here in Missouri that provides 6 cases of boost for free to cancer patients.  They call it a six month supply but I ran through it in a few weeks but it helped out a lot and saved me a lot of money which I am grateful for.  I would ask your doctor if they have any groups near where you are being treated that have any similar programs.  Contact them as soon as possible because it may take a few days to get things processed so you can get into their program.  

I do wish you luck in whatever you decide to do, be it a PICC line or a port, the thing to remember is that you can and will make it through this and never give up hope.  

Tim.

I had weekly 'pricks' for both bloodwork and Erbitux IV, for 8 weeks. The only regret in my therapy regimen was not insisting on a port!

As far as the PEG tube, my Dr would only consider as a last resort and for that I am thankful. Most of my weight loss occurred after my active phase of radiation was over. I lost 12# during treatment and 23# afterwards, for a total of 15% of beginning body weight. Like Tim, I got through on Ensure and Boost high calorie/high protein formulas. I'm 12 weeks post treatment and grateful to have not lost any 'swallow' although for a couple of weeks it was like swallowing knives. 

Ultimately, though, the decision is yours. Trust your gut.  

Amm6187 said:

Thanks for the response.

Thanks for the response.  What were the negatives of the peg ?  How do you lose so much weight taking  in 2-3k a day especially with peg? ( not being funny... Sorry if its a silly question)   by the way your comments make me laugh on a regular basis and i love your sense of humor.  I bet youre a really funny guy in person.

Alicia 

Amm6187,

PEG negatives:

- I could not be a male underwear model.

- I could not shinny up a rope.

- kids want to pull on it.

Serious:

- Things can go wrong.

- it can get in the way.

- you have to find a way to tie it up.

- my first one worked so bad it was close to the worst pain in my life.

- it takes the need to use your mouth out of the loop.

People lose weight with or without a PEG.  We have H&N members lose 10 to 100 pounds, no kidding.  Sometimes you don’t eat much one day with anticipation of making it up tomorrow, and then tomorrow you are 2 days behind.

If you have a PEG and it all works great (and you don’t forget how to swallow) then it knocks nutrition out of the top spot for things to be concerned about.

You do end up with a second belly button, so to speak.

Matt

My husband is just starting his third week of treatment.  He does not have a PEG or a port.  The doctor said most of their patients don't need them and if he does later on down the road, they will have it put in at that time.  So far he is still eating a fairly normal diet.  He even had pizza today.  Tomorrow will be his third of seven cisplatin and 12 of 36 radiation treatments.  Good luck on whatever you decide.

Although I had chemo once a week it was administered by a small IV line that was inserted just prior to chemo treatment. I asked if I was to have a PEG and was told no, and that if necessary I would have a nasogastric tube inserted (the two I had were doomed failures as I rejected both).

I went through treatments with no Port or Peg.  The more times they have to stick you for blood tests and chemo can cause problems with putting in an IV.  Since I didn't have a port, even now years later, it is hard to put in an IV or draw blood.

As you go through radiation treatment it may become more difficult/painful to swallow.  That is why many opt to have a PEG put in before treatment.  If you never use it, great.  But if you need it, you have it available.  I had to have a PEG put in for after surgery as I wasn't allowed anything by mouth for a period of time.  This was my one area that I probably should have done differently because I lost about 40% of my body weight through treatments.  

These need to be your decisions based upon recommendations from your doctors based upon what your treatment plan is going to entail.

My husband didn't have a PICC line or a PEG tube. He had good veins going into treatment, and thankfully, they held up. He only had 3 Carboplatin treatments and some rehydration therapy at the end, so a PICC line wasn't really necessary for him. As to the PEG tube, his doctors didn't recommend it, so we went with their expertice. They wanted him to continue swallowing, in order to keep the muscles moving in his throat, and said they would only put one in if it became necessary. He was able to get through it, but he lost a lot of weight. He did have some extra padding prior to treatment, which probably helped with that decision. He is a minimalist kind of guy, so, he was happy to have less and doesn't regret not having had them.