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port o cath/ decision needed

oneagleswings
Posts: 425
Joined: Jan 2005

As you may have guessed by the recent posts -my husband has to make a decision by Monday- we live in Canada and at present avastin ,while approved, is not widely available so his 2 options are
1) enroll into a clinical trial with FOLFIRI + avastin every 2 weeks and in order to do that he needs a port a cath put in with a 44 hour pump
2) start with xeloda (oral 5FU) and irinotecan (CPT-11-camptosar) every 3 week and add the avstin when it arrives in Canada at a private clinic in Toronto- (no pump) but there is no real guarantee when the avastin will clear customs and be available

Quality of life comes into play here since he of course would prefer to only be tied to chemo every 3 weeks (with no continuous pump) rather than every 2 weeks with a pump...but if he does not put in the port o cath Monday then he can't do the clinical trial...and what if avastin gets held up at the border for months

I wish someone would take us by the hand and help to make the right decision...

He is very reluctant about the port o cath...what does it look like once implanted?
Thank you so very much for any replies.
Bev

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Bev,

I have had 2 ports implanted, one when I was originally diagnosed and the second with my recurrance. I would do it again if needed, it sure makes it much easier to receive chemo and not mess up your veins and arms. Just my opinion. My port was my best friend during chemo!

Kerry

mindy10
Posts: 183
Joined: Jul 2005

Hi Bev, I just wanted to let you know that my dad has the port and he never has had any problems with it. You can only hear it at night pumping when it is real quiet in bed. There is a little port in his neck area. Then A tube goes into the neck area and the bag clips onto your pants. Its not as bad as it sounds. Any questions feel free to email me. Mindy

jana11
Posts: 708
Joined: May 2004

Well Bev, I just got my portacath put in 8 days ago. In the past I had central lines and just cleaned them 2x/wk and kept them sterile. BUT, I have eczema and the tape played havoc on my poor skin - causing terrible rashes and lots of itching.

I decided to get the portacath put in. THe procedure was easy! No problems, but they put tegaderm over it and the rotten tape burned my skin!! The cath sticks up < 1cm - the needle they use to access the port is 3/4 inch and it sticks out. I have a tiny incision that is still under steristrips. I never took any pain meds, but I am a very stoic person. So far so good. I do not know about the 44hour pump. I am getting CPT-11 and erbitux at the hospital once a week, but the whole process takes about 6 hours.

I hope this helps. I am glad I got the portacath. Once it heals I can go swimming and get wet and not worry about keeping everything sterile and dry. :)

I hope your hubbie is able to make a good decision that he is comfortable with. I THINK I would want to get the avastin in me ASAP, but it is not me.. good luck.

jana

taraHK
Posts: 1961
Joined: Aug 2003

Hi Bev,
This is a tough decision and I certainly don't have the answer for you. But I am happy to share my own perspective ('bias'?). I lean towards choosing the tx which appears to have the best success (with reasonable side effects). Quality of life issues are both real and important. But, it is amazing what one can adapt to. I am currently receiving chemo every 2 weeks, I have 48 hr infusion while hospitalized, and have a Hickman catheter. I was not too happy about any of these things initially but I am coping OK with it all now. I have heard generally good things about the portacath.

I wish you both all the best with your decision making as well as with whichever treatment you decide on.
Tara

StacyGleaso's picture
StacyGleaso
Posts: 1248
Joined: Mar 2003

Hi Bev,

I still have my port-a-cath, and I've been done with chemo since July 2002. Since I was (key word WAS! lol) stage 4, my thought is to keep it for a while just in case something decides to rear its ugly head again. It's about the size of a ladies watch dial, and is a small bump under the skin near the collar bone. The procedure to put it in is painless, and since I was getting chemo the next day after implanting it, the surgeon was nice enough to keep it "accessed" (meaning with the needle in it ready for chemo, yet taped nicely)so I would not have to be poked again. I get it flushed every 3 months, and through that poke is when they also draw blood...one stop poking instead of two!

I had the continuous pump of chemo prior to my surgery for 6 weeks. I had no problem whatsoever. No side effects, never missed a day of work. Showering was something just shy of a version of "Twister" that popular game of the 1970s. I suggest investing in one of those extended hose shower thingies since the fanny pack holding the chemo needs to remain dry. The port-a-cath also spares your veins. You will probably get quite a few opinions both in support and against the port, so the ultimate decision may be hard. If I had to do it again, I would have handled things exactly how I did.

Best of luck, your hubby will be fine...

Stacy

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

I delayed the portacath for a year because i didn't want the daily reminder (as if i needed a reminder!) of cancer. I finally gave in when it took them 8 tries to get a line in for a cat scan! I'm sorry i didn't get it earlier now. It's a wonderful way to get the chemo. I'm fairly thin, so you can see the small disc thru the skin as well as the outline of the plastic catheter in my neck, but people who don't know about it don't notice the catheter.
I can't help you with the decision, but wanted to let you know the portacath is a good thing.
Mary

neeliec
Posts: 106
Joined: Mar 2005

Dear Bev,
My port is under my skin-- you cannot even tell it's there! I do not ever have to have my veins pricked!!! Love it! My bloodwork and every needle-prick needed is done thrugh the port.

I did the 5FU pump with my first chemo--Dr insisted that the research shows more effectiveness of 5FU if done via slow infusion with the pump instead of only the bolus,shot, or any pills they give you. I went for it for the 3 months and was very manageable. When the drs. changed my chemo due to having to have treatment for grade 4-- instead of 3-- I opted for the bolus and no pump only because I would have had to go to his office 2x week and miss work everyother week.
My cousin oncologist has told me that one vs the other (pump, bolus, pill) is really splitting hairs. Consider quality of life-- your stamina, schedule, etc... cause there's really NOT THAT much difference in effectiveness..... Her words... :-)

So.... I have Avastin one week--- 5FU +CPT11 the next 2 weeks and repeat the cycle. NO problems with port, and have to admit I like not having the pump, either, but while I had it , it was okay.:-)

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

Hi Bev,

For me, getting the port was a no brainer. My veins were absolutely on fire after only going through surgery and a week stay in the hospital. There was no way I wanted chemo through the veins. Plus, my onc really pushed getting it (not that the push was hard) and I never regreted it. Mine was under the skin around the collar bone. It is roughly the size of a nickel and is a tiny bump under the skin. The functionality of it far outweighed the "looks" of it.

As for quality of life... this too shall pass. For me, this question would rest upon what group of drugs should produce the best results in the least amount of time. I would be willing to sacrifice in some cases to get the best care so as to live a longer, healthier life. For me, long-term quality of life is more important than short term. I am willing to have a port and carry a fanny pack every two weeks if that is shown to have better results.

I had the 44 hour pump every two weeks. I did not have Avastin, I had leukovorin, 5-fu (pump) and oxiliplatin (I'm sure I spelled incorrectly). The pump was annoying, but didn't alter my quality of life. Mine was in a fanny-pack with enough tubing to lay on the floor when sleeping and hang on the shower curtain rod when showering. Having the port-a-cath was great here because I didn't have to worry about keeping it sterile or dry and could shower and swim all I wanted.

Have you checked out the treatment decision toolkit on this site? Maybe that will give you some more information and lead you (and hubby) to making an informed decision on care.

Good luck with your decision. By asking all of the questions you do, I have no doubt that you will make a well informed decision.

Patricia

crazylady
Posts: 544
Joined: Jun 2004

Hi Bev,
I just had my port put in last Tuesday and will start chemo next Wednesday. My oncologist never gave me a choice about it. I didn't question him because my veins have been horrible lately and having a port made sense to me. The procedure itself was not a big deal. It is in my arm just below the elbow crease. I have been experiencing some pain the last couple of days way above where the port was placed, kind of like a pulled muscle. I plan to call tomorrow about it, though it is livable.
Jamie

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

Get the port is my recommendation. It is easy but also really helps to get the chemo more regularly. I know of too many that tried to use their veins that had all sorts of problems. Also Avastin is too caustic to go into your vein, you have to have a port so you might as well get the port and be ready for when the Avastin gets there.

Lisa P.

ron50's picture
ron50
Posts: 1401
Joined: Nov 2001

Hi Bev,
I had chemo back in the bad old days, I was given no option on a porta/cath. All chemo was inputted via a canula in the back of the hand. I had 48 sessions over a year alternating hands each week. The procedure was to use a local anaesthetic first ,then lance the vein and put the canula in. After twelve months the veins in both arms were pigmented dark brown from hand to past the elbow. Like I said I didn't have a porta cath but I sure wish it had been available to me ,good luck with the treatment Ron.

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