Port Anyone?

[pennstater]

In my 6th year of infusions with Tysabri. The nurse suggested I should look into a port. Some veins have developed scarring. I see my neuro late December and will discuss with him.

The few people I know with ports had them for chemo. And they couldn't wait to get them out. They said it hurt. I do realize that it could be because of their treatment.

If you have one, can you share your experience with it? Does it limit you in any way? The nurse said that some people if really thin or are active, it may be more painful. Has anyone found this to be the case? Have you had any trouble with infection?

I really dread the thought, but also don't want to kill all my veins. I may need them later in life🤔

Thanks

[Thinkimjob]

Is this a life-time deal? I had one in for three weeks after my brain haemorrhage. It really did hurt. I wasn't doing anything more active than lying in bed, and eating ice-cream.
Good luck.

[pennstater]

Is this a life-time deal? I had one in for three weeks after my brain haemorrhage. It really did hurt. I wasn't doing anything more active than lying in bed, and eating ice-cream.
Good luck.

Wow. Scary experience for needing a port! Thanks for sharing.

For me, it would be as long as I remain on Tysabri. Since it seems to be working for me and still JC negative, no plans to switch.

[Shoo]

I had a poet yrs ago for meds I was on, I think it was an antibiotic My veins were shot from many yrs of blood tests, from IVIg treatments, so they give me a port for a week or two till I was finished with the antibiotic.

I had no problems with the port and no pain.

Shoo

[pennstater]

Thanks Shoo. I think mine would be longer term. Glad to hear you had no pain! That's comforting to hear.

[jessiesmom]

My Port Experience

I had a port while I was having chemotherapy 7 years ago. Best decision I made. It was uncomfortable for a week after it was implanted but it really did not hurt. It is an odd sensation to feel it under the skin on the upper part of the chest below the collarbone. I have small nearly invisible veins and the port made chemo infusions much easier. It also made blood draws easier. I had it removed a few months after chemo was over. That was a simple office procedure. I know people who keep their ports in place for years. That is possible as long as it is regularly flushed.

I wish you the best of luck.

[Tawanda]

As for me, it wasn't bad...

Before I was officially diagnosed with MS, a port was installed for about a month to administer some serious antibiotics to make sure I just wasn't suffering from some new strain of Lyme Disease or something. I had some extra weird brand of Lyme that produced not just one target pattern, but several targets (in other words, my immune system was acting very oddly, but it was probably because of the MS and not the Lyme). Not only was I getting more and more targets, they practically doubled in size with each passing day. I looked like a monster!

I was quickly sent to the hospital to get a port installed for some advanced antibiotic treatment that does not come in a pill. From what I remember, the psychological idea of port being woven into me was much worse than any physical pain. I could even work outside the home back then.

In all my medical events, the one that set the bar for me was the LP headache 2 days after the actual procedure (the procedure itself was actually nothing for me). Other than being scared, the physical experience of the port was actually not that bad. Of course we are all different.

If you do get this done, my advice is don't get obsessed about it being in you. It's just another tool to help you with the hand you were dealt. Good luck.

[pennstater]

Jessiesmom - thanks for sharing your experience. Sorry to hear it was due to chemo. Since the Tysabri is every 28 days, it will definitely get flushed monthly. Glad you are doing well now.

Tawanda - appreciate your input. Sage advice on not obsessing about it!

I see my neuro the end of the year. I am leaning towards it. I figure if it really bothers me, I can have it removed, and then go back to getting stuck every month😱

[Tawanda]

I figure if it really bothers me, I can have it removed, and then go back to getting stuck every month😱

Exactly! You can always apply the "opt-out" option if you need to ...

[MarkLavelle]

So nice, I got one twice!

I've got my second port now (chemo for lung cancer 20 years ago and again 1.5 years ago) and I think they're way better than sliced bread!

I have never had any pain from either port, but for the first week or so I was definitely hyper-aware of them. With the current one, the skin over it is very tight (long-ish story, not normal) but I'm totally unaware of it unless I happen to see it in the mirror or brush my hand against it.

While the port does eliminate the "fishing for veins" game (ouch!), you get stuck with a fatter needle. That can be more painful than the little needles at insertion time, but at my infusion center they always do a little shot of lidocaine first and that perfectly 'hides' it.

My chemo is done (for now) but I still need lab work quarterly (and more) and CT scans with contrast, so it's not that many extra trips to get the port flushed monthly. The infusion center does all my blood draws while I'm there for flushing and the CT people use the port for my contrast (not available at all locations).

I expect I'll keep this one until my oncologist tells me I'm all done with cancer (not holding my breath)...

[GardeningMSer]

Port - an alternative

In my 6th year of infusions with Tysabri. The nurse suggested I should look into a port. Some veins have developed scarring. I see my neuro late December and will discuss with him.

The few people I know with ports had them for chemo. And they couldn't wait to get them out. They said it hurt. I do realize that it could be because of their treatment.

If you have one, can you share your experience with it? Does it limit you in any way? The nurse said that some people if really thin or are active, it may be more painful. Has anyone found this to be the case? Have you had any trouble with infection?

I really dread the thought, but also don't want to kill all my veins. I may need them later in life🤔

Thanks

My ex-wife received a port about a decade ago for successful chemotherapy - IIRC she wasn't bothered by it enough to complain.

As an alternative to Tysabri and its 13 infusions/year (I had about 8 years of it) I strongly suggest Ocrevus (see my posts in the Ocrevus forum) which is given twice a year after the first infusion which is given in two parts about two weeks apart.

I had the first half infusion on October 9, the second half on Oct 24. I have definitely become stronger, am walking better - still using forearm canes - yesterday I went further than I have in years and wasn't tired.

In my case the approval process took a while - it included getting years of medical records, lots of blood tests - several vials were needed, and an MRI.

Hope this helps.

G.

[pennstater]

I expect I'll keep this one until my oncologist tells me I'm all done with cancer (not holding my breath)...

Hoping you get that good news and your checkups are all clear! Thanks for sharing about the port - your description really put me at ease.

You hear the occasional story of someone who undergoes chemo and the MS Gods are kind to them, kicking it curbside by resetting the immune system. Fingers crossed for you.

[pennstater]

As an alternative to Tysabri and its 13 infusions/year (I had about 8 years of it) I strongly suggest Ocrevus (see my posts in the Ocrevus forum) which is given twice a year after the first infusion which is given in two parts about two weeks apart.

I had the first half infusion on October 9, the second half on Oct 24. I have definitely become stronger, am walking better - still using forearm canes - yesterday I went further than I have in years and wasn't tired.


G.

Glad you are feeling somewhat better on Ocrevus. I actually spoke to my neuro at last appointment about this. He feels that since I am still JC negative and stable on Tysabri, why rock the boat? He has converted a number of patients. I've lost a few of my infusion buddies to it!

[MarkLavelle]

You hear the occasional story of someone who undergoes chemo and the MS Gods are kind to them, kicking it curbside by resetting the immune system. Fingers crossed for you.

That would be great, but my neuro and another doc both think it was the chemo (and/or radiation) that I had over twenty years ago that triggered the MS. My first (and only) MS sx arrived only 6 years ago this Thanksgiving.

Maybe the latest chemo "reset" can undo the first! If not, I'll just hope for continued luck with non-progression...