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Port or Picc?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've been having problems with not absorbing magnesium. My onc says it's due to the chemo and is not uncommon. They've been giving me additional magnesium by IV right after the chemo every two weeks. This last time my magnesium got so low that they're calling it critical and had paramedice cme by the house this morning to give me an IV of megnesium rather than wait until my chemo tomorrow. I take pills every day but they don't abosrb very well.

They couldn't get an IV in me. Five tries and they finally gave up. My veins keep blowing. They're weak, rolling, small, valvey, and it seems that no matter what I do I'm dehydrated. So I'm a very hard start.

They had to speak to my onc and tell him they couldn't do it and confirm that it can be done tomorrow. He called me after and said they're going to do the magnesium once a week now. He wants me to consider gatting another port or picc line. I've had both. The port was rejected by my body and eventually started coming out on it's own. The picc line was uncomfortable. Both were uncomfortable all the time, actually. I found that the huge needle they use for the port was painful and a number of times it clogged and was difficult and just a pain in the butt. Plus you have to go get it flushed regularly.

I'm curious what you all think? Do you prefer one over the other?  And why? Thank you!

Jan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Just got another call from my onc. Chemo is now off until the magnesum is under control. Perfect. I'm going on a trip on April 20 and don't want to go anywhere with my alligator skin and creepy rash. The way it was set up I should have been much improved by then. The chemo makes me sun sensitive, too. Dammit, why does everything always seen to go south for me?

The plus side is that my most recent CEA is down to 7. But why can't I get past the 4 treatment mark? Ugh...

Feeling very sorry for myelf right now. I know things are much worse for some otjer people on here but this is disheartening.

Jan

Twinzma
Posts: 211
Joined: Jan 2018

I have seen more infections with Picc lines that I have with the ports. While the port though is more invassive, I would really be concerned with an infection in your weakened immune system. Not that I have a ton of recent experience, I did work in the medical field in the 90's so I know things have likely changed greatly, but even my friend with Hodgkins lymphoma had to have several removed and replaced recently. My dad's did as well just a few years back. 

 

abita's picture
abita
Posts: 609
Joined: Dec 2017

Did you get a prescription for Lidocaine for your port? If I put it on with the correct timing, I can't even feel the needle when they access my port. 

myAZmountain
Posts: 258
Joined: Apr 2018

So sorry to hear about your issue with the Magnesioum-dang you need a break! I had issues with ports--but it was from the use of dissolvable stitches that coused abcess twice, the Interventional  Radiologist was too egotistical to beleive it was due to the stitches--the third placement was rough and he went into the axillary vein instead of subclavian, but did use glue to close so no more abscess, just a huge blood clot from neck to elbow! I have since learned that blood clots are quite common with cancer/chemo/ports. Even after all that, I would still rather a port than a PICC line I think.  Hope so much you find the right IV acess without much pain and hardship! Love the pic and your horse is gorgeous!

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

I'm so sorry you have now experienced another setback with the mag being out of wack.  If they didn't give you a cream of lidocain to put on your port before insertion than I'm wondering why not.  Just put the cream on 1 hour before infusion, cover it with a big bandaid and you don't even feel the needle going in.  It's a prescription not OTC.  So hoping that you can still go on vacation and enjoy yourself.  A port also needs to be flushed and I'm sure your treatment center has done that, but it's very important.

Kim

feckcancer
Posts: 90
Joined: Jun 2018

just wondering if you have tried the epsom salts foot soaks and/or baths to absorb some magnesium that way. Also you can buy magnesium oils which the body absorbs too. i don't know if it absorbs better through the skin but might be worth a try if you haven't already

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I would say port, but that is only because I have never had a pic line. 

Flushing is no problem. Just the inconvenience of going to the hospital to get it done.  But you only get your line flushed once a month, if the port is not being used.  I think our friend, Dave, has gone in at even longer intervals, but that isn't recommended. Plus, with your track history, I would go in when they tell you to.  BUT, if you are getting your port accessed regularly, then you won't need to get it flushed. They do that before infusion. 

If you choose a port, then I would have a good talk with the surgeon, and ask why he thinks your other one popped out and if he thinks it will happen again.  If he said yes, then I would think that would be my decisoin made, and go with the pic. 

Ah, decisions!  Our life is filled with constant decisions. 

Good luck, Jan.

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for the input everyone. I really just do not want to do either. Physically they both sucked and I had Lidocaine and found that it made no difference whatsoever, is it possible it doesn't work for me? I still see myself marching up and down the hallway like a German soldier to try to get the line open so they could give me my chemo in it, feeling like a fool and angry about it. This was after spending 20 minutes coughing as hard as I could, holding my arms in different positions, all that crap. The port was just not overly helpful to me.

If I remember right the PICC line had yo be cared for carefully. I had it for about a week but I can't imagine having one long term.

One of the things that bothers me is that I hate having visible evidence of the cancer. I'm used to the ostomy bag but having a creepy line in my arm or a big lump on my chest is something that mentally I just do not want.

I think I'm going to talk to my oncologist about just stopping the chemo for now. Maybe four is just my limit. I'll be doing it twice a year and maybe four will just have to be the protocal. I feel rather defeated. I was determined to do all six this time. Four is the most I've ever gotten through before things went south. But it's not up to me. I feel great and am so much stronger than I was. I'm pushing towards, dare I say it, normal. 

Thank you all!

Jan

abita's picture
abita
Posts: 609
Joined: Dec 2017

timing is everything with the Lidocaine. Too early and it no longer works, too late and it doesn't work yet.

 

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

With lidocaine you need to apply it liberally and then put a bandage on it so it doesn't rub off before the needle is inserted and only about 45 minutes before.  Early or late, Abita is right, it doesn't work.  Hated the lump in my chest as well from the port as it hurt hugging my kids, husband, dad, etc as I'm think at it poked through so far. 

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh, I forgot. Twinzma, I'm on an immunotherapy chemo which is not really chemo so my immune system is fine. No worrying about bacteria or any of those things any more than normal.

And MyAZmountain, thanks for your words about my horse. The picture is from before I had cancer so it's about 6 years old but I love it. He's giving me a hug. He does that. The last time I saw him I stood beside his shoulder and he put his nack and head around me and stood like that for a couple of minutes. We've had him for almsot 20 years. He's my baby.

Jan

myAZmountain
Posts: 258
Joined: Apr 2018

Love that he is hugging you! When I was first diagnosed last year and had emergency surgery I recuperated at my daughter's school where she works--it is an all girls boarding school renowned for its Equestrian program...Walking up to the barn and visiting all of the beautiful horses was a huge part of my recovery process... giving them treats and petting their noses. So I equate horses with healing and love!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Do you live in Arizona? I'm going to Phoenix and possibly Sedona in April. I'm wondering what the weather will be like? First trip anywhere in 7 years!!

Jan

myAZmountain
Posts: 258
Joined: Apr 2018

Yes I do! I live in the Hualapi mountains, about 90 minutes south of Vegas. Sedona is gorgeous--the red rock formations are amazing! There are some cool little towns outside of there wortha visit if you are coming from Phoenix--they are Jerome and Cottonwood. I think the weather in April will be ideal-prob mid 70's during day and chilly cool at night! Praying you an get your treatment done so you can do your trip--

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you! My friend that we're going with has been several times and wants to take us to a few places. I've seen her pictures of the red rocks, stunning! I hope I'm strong enough to fully enjoy things. I've been exercising and am doing better. Cool at night, hey? I mostly just want to relax in a pool outdoors. I haven't been in a pool in years and when I was paralyzed after the blood clot I used to dream about it. I think because I was so weak the idea of buoyancy was very appealing.

I'm so looking forward to it! I thought I'd never get to go anywhere again, ever. Between money issues and being sick and weak it just didn't seem possible. But a few years ago I renewed my passport and got a ten year one because I was feeling optimistic. And now I'll actually get to use it! Yay!

The last trip I was on was Paris with the same friend. Two years before I was diagnosed. It was the most amazing thing I've ever or will ever do in my life. The sights were incredible and the people were so nice, nothing like their reputation. The last day we were taking the subway to the airport and I was going up a flight of stairs with my suitcase and bag and a man just grabbed my suitcase and ran it to the top of the steps for me! He just smiled and took off, so sweet. There was only one person the whole time that didn't speak english. It was lovely. 

I suspect this will be my last trip anywhere so I really want to enjoy it! I'm worried because it's been so cold in places where it's never cold. I'll be in the outdoor polls even if I have to wear a sweater!

Jan

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

The port is all I know and after the course of chemo it went as long as two months between flushes, before being ignored for a few years, then removed at the last liver surgery. Had to have it stripped once to clear the end in the vein, a "vein snake" from my groin upward. That was annoying, but the only other issues were trips to the ER when the connectors twisted apart during work. They had to make a new needle and line to the connector, as it clogs right up. I learned to tape the connectors after that. The port did it's job, and having it anywhere else but my chest would have been really limiting. Needles were and are a pain since my veins are rollers too, if I had to do it again, I'd pick the port. Hope you find what works for you Jan......................................Dave

OnTheRoad
Posts: 10
Joined: Jul 2018

Hello, JanJan

I finished my 12th session of Folfox abou a month ago. The port worked fine for me but the nurse once said not everybody has a good experience with it.

She told me 2 stories about other patients that also had their bodies rejecting the port. In one of the patients, the rejection was so strong that the port was starting to surface on the outer skin due to rejection. She also told me they tried to remove the port and install a new one in the other side of the chest, just to have the same rejection results there also.

Maybe if your body rejected the first port it will also reject a possible new one.... I think this is a possibility....

BTW, I also hate any type of things in my body that reminds me about the cancer. I even did not liked to wash too much the port side of my chest just to not touch it and remember how bad I felt sometimes during chemo.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

It took about a year for it to happen but that's what mine did. Two of the three little bumps came through the skin and were bleeding. I agree, it would probably happen again.

Welcome to the forum!

Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

I haven’t had either so can’t help much. I did have quite a few magnesium drips the time I lost my electrolytes. I hate to find your having more problems. Good luck Jan!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I had the magnesium yesterday. They got the IV in on the first try. I don't want a port or a PICC so they can just deal with me. I think I'm going to suggest that I just have four treatments each tme, not six. It'll be twice a year so that ought to be enough. We'll see what he says. That would mean that I'm done this time around. Which would be wonderful. My skin is really taking a beating and I'd be happy to have a break for a while. I feel so good these days its wonderful. I'm so happy to be able to do things for myself and clean my own house and do my own laundry. I did 5 loads the other day and went up and down to the basement each time. I hadn't been down there in months due to being too weak for the stairs.

The medical people I've dealt with over the past few days have been acting like I'm going to drop dead from the low magfnesium and it's been scary because of that but I feel fine. I think I might manage to go see my horse today, even. The weather has warmed up a bit and I miss him so much!

Jan

Twinzma
Posts: 211
Joined: Jan 2018

What kind is he? My friends just got a new addition just a week following a horrible loss of thier 2year old. He really is amazing! His Blood line is from Bold Ruler (Secretariat's sire) and Native Dancer. You would think that with his genes he would have been an amazing race horse but no....They ended up renaming him Molasses before he left the track and went into the police academy. Rigorous training, but still too slow so that's how my friends acquired him. Only 8 and on his 3rd home already....It's a sin but he is adapting very well to his new home. Their other horse though is not liking it too much yet, it's an Arabian and stubborn, but in time they will stop snorting at each other....I hope! Almost 16 hands, amazing! I keep telling Jim I want one, but no.......We live in an equestrian neighborhood, so he says I can see all the horses I want! lol Oh well maybe one day he will change his mind. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

You need a horse! You can't live in that area and not have one! That's sad!

There was a thoroughbred where we used to board that was the same. Gorgeous gray guy but had no heart for running. He's learning to jump now. My guy is half quarter horse going back to Stromy Frost and a quarter thoroughbred and a quarter morgan. He has the morgan body so he's solid and chunky. I rode him this afternoon for the first time in about 8 or 9 months. He was perfect as always. He's such a good boy, I'm so lucky to have him. It felt so good to be on his back but my daughter had to put his saddle on. I have little strength to carry it let alone raise it above my head. It was even a struggle to get on from the mounting block. But once I was up there it was heaven. We just walked and trotted a bit for maybe half an hour but I feel like a million bucks now. 

Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

I’m so happy you Got to ride your horse today! It’s amazing what something like that can do for us.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Sandy, it's good for the soul. I wish I knew how to post pictures on here, I'd post the pics of my horse visiting me in the hospital. He's such a cool guy. He tolerates anything and everything. I adore him. I was talking to an animal communicator a few weeks ago (think what you will) and she said he and I are 'fiercely connected'. I believe it to be true. He kept turning his head to look back at me when I stopped like he was making sure I was okay.

A few years ago after I got out of the hospital after the blood clot I went there to visit him but could still hardly walk. So they got me a chair and I sat in the doorway of an observation area in the indoor arena. They brought him in and he just stood and snuggled with me for a long time. The next few times my daughter went out there and would take him in the arena to run around loose he'd run over to the observation area and look in through the window to see if I was there. He did it a few times, apparently. I love him so, so much. Sorry for going on about him so long. 

Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

Animals are smarter than a lot of people think. He was probably just as happy to see you as you were to see him. I love to here you talk about your horse......he makes you so happy! 

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