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mediport removal

alicia2006
Posts: 5
Joined: Jun 2008

I am new to this board. I had colon 3b in August of 2006, surgery-re-section, chemo 6 months. Twelve rounds of Oxaliplatin, 5FU, steroid, and a slew of anti-nausea drugs (most that have been mentioned in other posts. The neuropathy was very bad during chemo and for about six months after. Plus the "can't lift your head off the pillow" feeling for about five days after the set of chemo. Each set did get worse until I was questioning how do they know 12 rounds are better than 11 or 10. But, I stuck with it. Now after a year and almost a half, I still have my port and the DR says to keep it another year. I really hate going in to get it flushed every six weeks, it's just a big reminder that I am a cancer patient. Believe it or not, there are some days now when I don't have a thought about cancer. How long have you kept your ports and do you feel that keeping a port for two or three years is too much, just about right? Thanks, Alicia

kristasplace's picture
kristasplace
Posts: 876
Joined: Oct 2007

Hi Alicia! Congratulations on completing your treatments! I am still undergoing them, so i still have a port which i plan on removing ASAP. I know the doctors recommend keeping it for around three years, but you can keep them for up to seven years.

My choice is to remove it as soon as i'm done because i dislike it and it itches, and bothers me. IF i ever need one again, i'll simply go through the surgery again. It's minor compared to everything else we've been through.

Good luck, and many hugs!
Krista

Faith88
Posts: 55
Joined: Sep 2007

Hello Alicia,
I saw your post and wanted to say first, welcome, and congratulations on completing those 12 rounds. My husband also had colon cancer stage 3 and finished up the same chemo in December. He had his port removed I think 2 months later. It wasn't bothering him, but the doctor thought no need to keep it in. This made both of us feel good, and that mentally it makes you think "DONE" however, I understand that many doctors don't want to have patients go through surgery again if it turns out to be needed in the future, but I would think that 2-3 years seems a long time!

Regarding the neuropathy, can you tell me when it went away after 6 months, was that sudden or gradual? My DH has suffered terribly with neuropathy and it's no better since he stopped chemo 6 months ago. He has pain in his hands so bad he can't sleep. It's in his feet as well, and he can't drive his car with the clutch.

I'm hoping it will just clear up one of these days and pray that it does but so far there is no indication it's going away. anything you can tell me that might be encouraging would be very much appreciated.

I hope you can get an answer soon to your port question and start enjoying your life again.
best,
Faith88

alicia2006
Posts: 5
Joined: Jun 2008

Dear Faith,

Yes, it was gradual for the neuropathy to leave. My dr said that for some poor folks it never leaves. (This was a big fear for me since it took so long to go away.) I think what really helped was the summer. My chemo ended in Feb. and it was COLD. By the end of the summer the neuropathy was gone. I still have some sensitivity to cold, but not the pins and needles like before. During chemo the neuropathy was very bad, including as some have stated the throat problems, swallowing liquids, etc. I also had in in my feet and legs. My dr also said that for some it takes up to a year after chemo for it to go away. I've had a few other strange things happen that I'll put in another post. Thanks for the mediport info, sometimes I think that the dr just likes to make the money on the every six week flush appt. but I can be very pessimistic sometimes. Alicia

betina61's picture
betina61
Posts: 642
Joined: Aug 2006

I had my surgery July 06 and finished my 12 rounds of chemo January 07 forgot to mention I was stage 3a after that all scans were clear and my Dr. ordered the removal of the port, even though that I didn't have any problems with it.For me it was very encouranging and gave a great feeling like if I was over with this cancer if my own Dr. was recomending it. If something happens in the future that will be a new chapter, and we will do what we need to do.Anyway I have heard of people with real complications with the port, and if you are not using it now, better to get reid of it. That is my opinion.

DK2006
Posts: 126
Joined: Jan 2006

Hi Alicia,
I, like you, felt that my port couldn't come out quick enough. I scheduled my port removal on the day my pump came off on my last round of chemo.
Best wishes,

Donna

pamness
Posts: 511
Joined: Nov 2007

Like you, I had a horrible time with chemo - actually I was supposed to have 8 rounds - I was 3A - I could only finish 5 with the oxalyplatin and finished the rest along with surgery and radiation with the 5FU. My doctor recommended I have my port removed as soon as I finished treatment and had a clean CAT Scan. I finished treatment in late August of 2007 and my port removed at the end of September. You can keep them in for quite a while. I gather you must have had a number of clean scans, etc. Maybe you should ask again.

Pam

sladich's picture
sladich
Posts: 430
Joined: May 2007

Alicia,

I had my port removed after my 6 months of chemo because I was "cured." My onc did not want me to have it removed. 4 months after stopping chemo I had a recurrence in my liver. A new port was put in. I would hold off until you are in the clear.

Debbie

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

HI,
I was diagnosed stage III rectal cancer in September of 06. I still have my port. I go see my onc next Monday for my 3 month checkup. The last checkup in March he stated if my petscan comes back clear in September (2 year mark) then the port could come out. I think there are pros and cons for getting it out or leaving it in. For me I am ok I still have it. It doesn't bother me at all and I am still seeing the dr every 3 months. I would be fine if my onc told me to keep it another year. I really never even think about it.

Kiersten

KFalvey
Posts: 117
Joined: Mar 2005

Hi Alicia,

I had my port removed as soon as I finished FOLFOX4. It really bothered me. They say you usually have recurrances within 2 years of finishing treatment. I had a recurrance 6 months after chemo, had another port put in during 2nd surgery, 6 more months of chemo and had it removed again as soon as I finished. I've decided on no more chemo so I don't need a port. I had a 2nd recurrance last year and had 3 surgeries to remove the cancer, but no more chemo. So far, clear after 6 months.

Faith88, As for the neuropathy; I also had that, and it got worse after finishing the chemo. I started taking L-Glutamine powder twice daily in yogurt, and Alpha-Lipoic Acid tablets 3 times a day. It seemed to help some. My oncologist told me to take Vit.B6 supplements. Most of it went away after around 6 months, especially in the hands, but I still have it mildly in the feet after 2 years.

Good Luck!!
Kandy

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi and congrats on finishing chemo!

I finished chemo and my onc ordered the port to be removed within days of my last "access". He had zero issues with it being removed that soon, never even suggested that I keep it in. Of course, his attitude during my entire treatment was that I was way too young to be going through this and we were going to make me better... that's it, end of story. He had the faith to keep me strong.

The port never physically bothered me so much, but mentally it was a huge burden. That's the one scar I hate the most too. For me, having the positive attitude of being "done" and "cured" outweighed keeping it "just in case". I would rather keep my spirits up with it out and know that "IF" I ever need it again, I will get it again.

Good for you for having days that you don't even think cancer!

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Alicia,

I was diagnosed in Oct 2001 with stage 4 colon with liver mets. My port was put implanted in October and chemo with radiation started right away, ending in December, 2001. 10-hr surgery Jan 2002. More chemo til July 2002, and final surgery Sept 13, 2002 to reverse the illeostomy. I still have my port today. Several reasons for this:

1. For me, it's a security blanket. I was stage 4, and still not totally convinced this bad boy isn't coming back.

2. I've never had any problems with it. I get it flushed every 4 months (when I remember anyway) and even waited 9 months at one point without incident.

3. I was told you can keep it for up to 10 years, as long as there aren't any problems with getting a return, blood clots, or pain/discomfort.

4. If I have it removed and the beast should return, it cannot be implanted in the same spot. It would have to be under the arm, and I would imagine that would be a very peculiar location.

So, until about the past 2 weeks, I never considered getting it removed. However, I am slowly warming up to the idea of it. Mainly because I am so far from diagnosis, but also because the nurse who last flushed it told me that the port can "flip" and it would not be able to be accessed, and at that point there is no choice but to remove it. So rather than have it dealt to me, I'm considering its removal in the next few weeks/months.

I think you need to do what works best for you.

Happy Tuesday,

Stacy

hannacat's picture
hannacat
Posts: 101
Joined: Jun 2008

Hi Alicia,I was diagnosed with 111b cancer Dec.2006. The port was put in jan.2007. I have flushes every 6 weeks and really don't worry about it. My onco says that when I see him every 6 months (instead of the 3 months I see him now)we will talk about removal. During surgery and chemo my veins were a mess so I feel kindly about the port. The flushes have always been easy. I think if I had a difficulty with them I'd push to get it out. Hope this helps. Good luck,Hanna

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Welcome Alicia

I was Stage 3 also. I had my port removed 2 months after my last chemo. The Onc said "do it"!

It was giving me a bit of problems, too. Could never get blood out of it so I'd have to get a new one anyway. So far...so good!

Wow..12 rounds of Oxil!! I only lasted 4 and went to another chemo.

Congrats on NED

Claudia

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