Port or no?

Amm6187
Amm6187 Member Posts: 19

Hi everyone!  Just curious what your thoughts are about having a port versus not having one?  Needles don't bother me at all but from what I've read on here they are worth it and my Dr would like me to get one also but its my choice.  Also, feeding tube thoughts?   Dr says if I lose 10% of body weight its mandatory and they prefer to have it done at the beginning bc its already done if its needed.   I was trying to avoid any kind of extra procedures if possible but these are starting to seem unavoidable.  Thanks for your input. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    let the debate begin

    Amm6187,

    I had a PICC not a PORT and either can make needle sticks  a thing of the past. No matter how unafraid or not bothered by needles you are (not) they are a convenience at a stressful time, but technically they are an extra procedure.

    A PEG tube can be great or terrible; you will hear both sides of the argument here. I had 2 PEG’s, one very bad and one very good.  I always drank at least one meal a day and 20/20 hindsight I may have been able to make it without one.

    You need to consume 2k – 3k calories a day, any way you can (eat or drink). This can become a chore and take all day by mouth or hook up to the PEG and you are done in less time.

    Doctors are in both camps, they have seen the good, bad & ugly.  If you go without, you are usually ahead of the game in eating and drinking.  BUT, some are so overwhelmed that a PEG is their lifeboat.

    I think it is possible to start PEGless and switch over to PEG during treatments, but that is my opinion.

    Good luck,

    Matt

  • ShatterGhost
    ShatterGhost Member Posts: 2
    PICC Line Here

    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.

     

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited May 2017 #4
    I have a port, the way to

    I have a port, the way to look at it is, no matter how it doesnt't bother you - and getting stuck never bothered me - chemo is a poison and will damage your blood vessells - knowing we are going to the same place, if you refuse a PEG as I did, you could at one point get stuck 3 - 4 times a week. having a port, makes that a lot less stressful

  • Tallkidsmom
    Tallkidsmom Member Posts: 9
    Frequency

    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
    Amm6187 Member Posts: 19
    CivilMatt said:

    let the debate begin

    Amm6187,

    I had a PICC not a PORT and either can make needle sticks  a thing of the past. No matter how unafraid or not bothered by needles you are (not) they are a convenience at a stressful time, but technically they are an extra procedure.

    A PEG tube can be great or terrible; you will hear both sides of the argument here. I had 2 PEG’s, one very bad and one very good.  I always drank at least one meal a day and 20/20 hindsight I may have been able to make it without one.

    You need to consume 2k – 3k calories a day, any way you can (eat or drink). This can become a chore and take all day by mouth or hook up to the PEG and you are done in less time.

    Doctors are in both camps, they have seen the good, bad & ugly.  If you go without, you are usually ahead of the game in eating and drinking.  BUT, some are so overwhelmed that a PEG is their lifeboat.

    I think it is possible to start PEGless and switch over to PEG during treatments, but that is my opinion.

    Good luck,

    Matt

    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 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    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 

    Life with PEG

    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

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Do it

    I chose not to get the port or feeding tube. I ended up with the feeding tube anyhow and No viens. I had huge veins prior to chemo. They are gone now. In hind site I would have gotten both at the start. Just for all the lab draws alone it was worth it. You can figure on roughly 2-5 need sticks a week if you end up needing hydration. And I could only get one day out of each Chemo vein site. I also found that an abdominal binder, velco, worked great for keeping my tube in place. I would catch the thing on everything. I even slept with the binder on. it was like 20 bucks at the pharmacy.  

  • Chicklette
    Chicklette Member Posts: 225
    My husband has neither

    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.

  • frokker68
    frokker68 Member Posts: 49 Member
    Hi there,

    Hi there,

    I am in week 2 of 7 weeks of treatment, I have both.  I didn't want either one, but went off the suggestions of the Doctors.   The PEG tube is a little bothersome at first, but now I forget it's there.  I just tape it to the side out of the way.   I have not had the need to use it yet, but the Doc thought it would be better to get it before treatment and not need it rather than be in the middle of treatment and need it where at that time you could possibly be really feeling some tough symptoms and go through surgery.   Made sense to me.

    Chemo port.  Again, didn't want it.  The Doc talked about how an IV and how one missed vein could spell trouble.  I also have tough veins and always end up getting poked 2 or 3 times.  Doc suggested I get the "power port" as it allows more volume (less time in chemo chair)  plus they can do blood draws though it as well as CT and/or MRI contrast dye.  Knowing I'll be getting constant blood draws over the next 2 to 3 months and a couple scans after treatment, easy choice.  Put it in.

    Mine were installed 1 week apart.   Poor planning on their part perhaps?  I didn't care for 2 surgeries in 9 days, but I did it.   Maybe they can do both at the same time for you if you decide to get them.  

    Note..... the PEG surgery I was put out. It was about 30 to 45 minutes.  The port I was awake, a little sedated but awake.   Again, about 45 minutes.   

    All the best with your treatments!

    Keith

     

  • Bob Watt
    Bob Watt Member Posts: 60 Member
    I had neither as well

    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).

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    No PEG, lost +40 lbs.   Did

    No PEG, lost +40 lbs.   Did do a PICC line in the arm, one of the better decisions, especially if you end up doing drip hydrations which can be a life-saver in the last weeks.

  • SASH
    SASH Member Posts: 421 Member
    To Port/Peg or Not Port/Peg

    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.

  • phrannie51
    phrannie51 Member Posts: 4,716
    I'm in my third go round, and I

    requested a Port.  I didn't want a pic line, because they have to be saran wrapped to shower and they can become clogged, which means you have to go get another put in.  I sat in the chemo room the first treatment, and watched people get poked 4 or 5 times just trying to get a vein that would hold up...they'd sit with hot compresses on their arms trying to make the veins stand up, etc etc....I suppose if a person has good veins that isn't a problem.  For some people it'd take an hour to get an IV going.  A Port was slam bam thank ya, maam.....instant hook up...they could use it to get a CBC, hydration, I even had 3 or 4 blood transfusions with it.  Get one, you'll be glad you did.

    As for the PEG tube, I had one and ended up being grateful for it, also.  I found some cute lycra camasoles on Amazon....they held the tube close to my body, and I didn't have any problems.  Unlike Matt....I didn't show it to children, but I did have a puppy who thought it might be a tug toy.

    p

  • Kapital
    Kapital Member Posts: 52 Member
    PICC/PEG

    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. 

     

  • Amm6187
    Amm6187 Member Posts: 19
    Thanks everyone for all the

    Thanks everyone for all the good advice.  Im going to get a port... Just seems like the logical thing to do.  Im gonna wait on the PEG in hopes I won't need it.  I FINALLY got a start date which is June 8th (a Thursday??)  so the count down begins.  There's a lot to get done before it starts but it should keep me busy.  And a new thing to worry about... Got the results from,routine pap smear after baby and it showed abnormal cells??? Oncologist was pretty confident that the PET would have shown something but now I get to go back for every womans favorite drs appointment. 

    Alicia