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problems with new port- update & good CEA news

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Well I went in for chemo today and my new port (which I've had chemo on twice now with)... no problem with getting the blood drawn, but when the nurse went to flush the port after drawing the blood, I got an awful burning sensation under my port going down towards my breast. That is exactly what happened with my old port and is why I had to get it replaced. How weird is that- that my new port may be defective?
My husband thought maybe it was the nurse putting the needle in wrong and maybe she punctured the side of the port. Viable consideration, except that this was a different nurse than the one who it happened with in the old port & I had both many other times and there was never any problem before. Frustrating- I really don't want to have to go get another port again!

I did get chemo today- they gave it to me through a vein in my arm. I was nervous about that, but it was really easy and I didn't feel a thing, fortunately.
Since they had already drawn up the Avastin, so they can't change out this port, if needed, for another two weeks. The plan is that I'm going to go in this next week for a dye test in the new port to see if it's leaking and, if it is, I'll get chemo again next Thursday thru my arm again, then about two weeks from now, they'd replace the port again.

Grrr... frustrating, but I know I'm not the only one who's had to have a port replaced shortly after getting it. Anyone else?

Lisa
-------------------------------------- **SEE UPDATE DOWN BELOW***

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

The nurse can't go beyond a certain point in the port. The backing on the port prevents them from piercing beyond acceptable areas of the port. So it's probably a port defect. And dang, I'm so sorry about that, getting it once is enough, but 3 times??? OMGosh.
Winter Marie

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

oh Lisa what a shame....seems almost impossible that you would be going through this again....sorry about that.....glad you were able to get the chemo done

mags

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

That is terrible that this port is not working correctly. Hoping that the dye test will show exactly what is going on with it. Hope you don't have to have a replacement. Good luck.

Kim

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

That is a big time bummer!!

You must be really tired of them chemo by now, I pray for remission for you Lisa. Keep fighting!!

Lifeisajourney
Posts: 217
Joined: Apr 2010

put in 1/09, so far so good. Just a note that a couple of the onc nurses told me not let anyone access port unless they were sure they were capable to do so. I have never used it for blood test other than when on the cancer floor of the hospital. Also have never used it for c scans other than when in hospital. They said not everyone really are expertise at it so I have been very protective of it, it may be just luck so far, but just a FYI. Pat

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa, what a pain in the neck (or maybe somewhere else) for you. I am so sorry to hear you are having trouble with this port. I am glad the infusion went ok through the arm.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Lisa

It's the gift that keeps on giving, isn't it?

I'm sorry this one looks bad - maybe you can now upgrade to a Powerport this time...if you have to go through it again, you might as well get the best. It's really helpful for scans, where they can inject contrast through the port, unlike with a mediport.

-Craig

coloCan
Posts: 1956
Joined: Oct 2009

The first time chemo nurse attempted to infuse me with my very first dose of chemo (not counting the Xeloda I had swollowed that morning) port did not work so my veins were used (which hurt/burned by evening and next few days, my arm,that is) and I was sent to hosp for dye test of port. When nurse tried to access port before test in hosp with dye,I was laying down on bed,( not seated in recliner, as in chemo room)--port worked perfectly, didn;t need testing and was sent on my way......
As long as I was lying down when port was accessed ,it worked.May not be solution in your case,Lisa but might one day be for others.....steve

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I'm really kind of wondering why it's considered such an advantage to be able to be given contrast dye through the port vs. your arm. I honestly think I prefer getting it in my arm. I hate getting my chest punctured every time I have chemo. Maybe it's just my skin, but my skin on my chest is very thin and very sensitive. The skin around my port turns bright red every time and is tender to the touch every time for a couple of days after chemo- just from getting scrubbed and adhesive being put on it. After getting chemo through my arm yesterday didn't hurt one bit, I was almost thinking it'd be better to do it that way every week. I hear some people say the veins in their arms burn and hurt afterwards- maybe that depends upon the type of chemo you're getting, cause mine did not hurt or burn one bit with getting Gemzar and Avastin.
I will ask about it when I go in anyhow.

coloCan
Posts: 1956
Joined: Oct 2009

Mine at that time was oxi and that, I believe, is why I felt a burning and pain sensation that gradually moved up my right arm. Had I used my left arm, I would have thought heart attack.....steve

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Lisa, Don't they leave the tube in your arm until you are done with chemo, so that you don't have to get poked each week? I don't think you can get poked each week?? I don't think I would like that attached to my arm, day in and day out.

A lot of I don't knows here. Sorry.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Sorry to hear about the port problems, Lisa... it's not as if you don't have enough on your plate, then to have to worry about the devices they use to get the meds into you!

My guess as to the advantage of using a port vs a vein in your arm for the contrast dye for the scans is because of scarring. My right arm, which has the BEST veins for use for the contrast dye are also the same veins that are used to draw blood. Because of all the umpteen pokes, a fair amount of scar tissue has built up so it's now hard to access the "good" veins... and the other veins are too small so they roll or blow when they put the needle in for the contrast dye.

When the port is working correctly, it really is a great device since they have direct access to your veins, rather than having to find them, then the whole hassle of rolling veins or them blowing out because they have just had enough of all the pokes ;) I swear, when I'm driving to the Cancer Agency where they do the blood work and/or scans, my veins roll and run away before I even get there ;)

Cheryl

ketziah35
Posts: 1154
Joined: Jun 2010

I had so much to say regarding this issue that I had to wait to respond on a regular keyboard instead of my usual blackberry response. Since May my mother has been in the hospital 7 times. Five times due to issues with the port.

Here are her hospital visits.

1. Dxn'd and resection
2. Infection due to surgery
3. Original port placement
4. Port twisted and she passed out due to lack of oxygen to the brain
5. Port replacement
6. Elevated heart rate-bloodclots doc said due to port as they are around port-put on Cumodan
7. Elevated heart rate-put on shots to increase blood thinning

This port thing is a trip. The only thing that I think that is calming to us is that my mom has a medical diary. We monitor her heart rate, bp, temp, color of poop since Cumodan can make you bleed internally and there a couple of other things we monitor daily. Then she writes how she feels-pain, not sleeping, heart palpitations, etc and this really helps her doctor track any issues that she may have in the future.

It seemed like every Friday before her chemo off week she was having issues. So the week she was supposed to be enjoying doing special things, she was in the hospital again and again. I know that this interferes with the quality of life, because once you think that you have it corrected an issue comes up again, but after a couple of rounds of trying to fix the port issue, I think they have resolved the issue and she seems to be doing much better and is feeling much better.

Hope this helps.

ketziah35
Posts: 1154
Joined: Jun 2010

I had so much to say regarding this issue that I had to wait to respond on a regular keyboard on a regular computer instead of my usual blackberry response. Since May my mother has been in the hospital 7 times. Five times due to issues with the port.

Here are her hospital visits.

1. Dxn'd and resection
2. Infection due to surgery
3. Original port placement
4. Port twisted and she passed out due to lack of oxygen to the brain
5. Port replacement
6. Elevated heart rate-bloodclots doc said due to port as they are around port-put on Cumodan
7. Elevated heart rate-put on shots to increase blood thinning

This port thing is a trip. The only thing that I think that is for physical evidence of internal bleeding since Cumodan can give you that side ecalming to us is that my mom has a medical diary. We monitor her heart rate, bp, temp, checkingffect, and there a couple of other things we monitor daily. Then she writes how she feels-pain, not sleeping, heart palpitations, etc and this really helps her doctor check for issues before they get to outta control. This is crazy, but she is at the point where she would do whatever it takes to avoid another trip to the ER.

It seemed like every Friday before her chemo off week she was having issues. So the week she was supposed to be enjoying doing special things, she was in the hospital again and again. I know that this interferes with the quality of life, because once you think that you have it corrected an issue comes up again, but after a couple of rounds of trying to fix the port issue, I think they have resolved the issue and she seems to be doing much better and is feeling much better. She will be doing some travelling this weekend and going to a party at a resort. So dealing with her port did get better.

Hope this helps.

sasjourney
Posts: 395
Joined: Jul 2010

Lisa,

I am so sorry to hear you are having trouble with your port. Hopefully, it can be corrected easily or maybe it is better for you not to use it since you did not experience any problems having chemo through your arm. I always hated when they poked me in the port and I had my nurse spray with numbing spray before she inserted the needle.

Hope your CEA has dropped. I will be praying for you.

Have a nice weekend!

Hugs,
Sara

coloCan
Posts: 1956
Joined: Oct 2009

which gets put into your inner,upper arm and chemo infused thru that device, which can also be used to draw blood but needs flushing and won't last nowhere as long as a port. I needed two PICCS for 9 doses .

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi Lisa - Have you considered not using a port? I did 6 cycles of oxaliplatin/Avastin back in 2005. The oxy was tough on my veins, but doable. I've been on Avastin only every 3 weeks since 6/1/2009 - easy peasy using my arm veins - no pain, no problem.

Not sure what Gemzar issues are, but chemo without a port is possible.

Just a thought............
Betsy

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

bump

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thanks, everyone, for your thoughts on the matter. I go in tomorrow for them to check the port. Since I had the Avastin on Thursday, if they determine it needs replacing, I'll have to wait another week and a half because of the Avastin issues.
Yes, I've had the numbing spray each time I've gotten chemo through the port. With my sensitive skin, I just hate the numbing spray even- it burns my skin. The skin on my chest has always been ultra sensitive- even when I was younger, if I ever got a mark or rash on my chest, it would take way longer to go away there and would burn, itch, or hurt more than any other similar mark in another location on my body.
Anyhow, it's still probably best to have a working port, so we'll see what they say tomorrow. I'll ask about different options.
Sara, I didn't get my CEA results back yet, they should be in on Monday.

Lisa

sasjourney
Posts: 395
Joined: Jul 2010

Lisa,

I'll be waiting to hear the good news...I know it will all be positive. I'm sending you positive vibes and energy. Big hugs to you.

Sara

P.S. I know what you mean about sensitive skin...I definitely have it, too. I get red very easily.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Probably spelled wrong, but they don't use numbing spray at my OOU, they use Lanicain, numbs it and no pain at all.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Sorry for the late post. George is on his 2nd port. First one tube bent and nothing in, nothing out. One very experienced nurse gets the blood, no problem. Other nurses have problems getting blood, arms up, arms down, head up, head back, back in chair, straight in chair, George had done it all but stand on his head. Usually he just says take the blood from the arm but as far as chemo going in, he has no problems.

Best wishes - Tina

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Well, I went into radiology today to have my port checked... they said there's no problem w/ my port. I'm relieved, but still somewhat concerned because it was definitely burning when it was flushed this last week before chemo & it burned again when they first flushed it today in radiology. They ran the tests with injecting dye and said there's no leak to be found and it seems to be working well- no explanation as to what is causing the burning. Hmmm... I guess I'll see how it goes this week when I get chemo again on Thursday.

Also, I got good news concerning my CEA results from the blood draw from this past Thursday. It went down from 88 three weeks prior to 73. This is definitely good because it had been steadily going up since about the end of July until now. Interesting because last cycle I had to skip the Avastin because I got the new port in & I thought that since it was already going up, that it would for sure go up even more with skipping the Avastin.

The only explanation in my mind is that two weeks ago I started "zapping" with the zapper (google it) and did a cleanse and started on several supplements. I guess we'll see if the downward trend continues next time or not (I'll get it drawn in another 3 weeks- they draw it at the beginning of each 3 week cycle). I have an appt w/ my onc this Friday & I had thought we'd be discussing "what next" due to the rising CEA, so I'm so pleased that it's gone down some- I feel a new sense of hope!

Lisa

sasjourney
Posts: 395
Joined: Jul 2010

I'm very happy to hear the news about your CEA. I knew it would go down this time...I just felt it. Now let's watch the trend continue...You are doing a great job!

Hope you had a nice weekend.

Big hugs to you,
Sara

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Good to hear the port ain't a POS. GREAT news about the CEA. I am going to check out that "Zapping". It does make you feel good when that CEA goes down. You take care.

Jennie

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Lisa- are they flushing the port too fast? Wondering if the saline they are using is not body temp and if injecting it too fast, producing the burning or icky sensation? I know when mine was flushed I would get a taste in my mouth, metal? and it definitely felt different, I am remembering mine to be a cold feeling that went away after awhile. It definitely was noticeable.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Pattee,

I asked the doctor who was checking the port out today if it made a difference how slow or fast they flushed it... he said he didn't think so & then he did it both ways and neither time (after the initial time he did it when it did sting) & it didn't sting either time. Go figure. I always taste the heparin and saline in my mouth when I get flushed too. I can also feel the cold going into my veins, but that is different than the burning feeling I experienced. I just don't know.

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

omg Lisa im so happy your cea has got down

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

I am so happy for you; your CEA going down is awesome. I am also glad your port is not leaking; I hope they figure out what is causing the burn. I love hearing good news!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Congratulations on your good news, Lisa. I'll be hoping that it continues!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Excellent news about your CEA going down, Lisa!! Hey, any downward trend in CEA is a good trend in my books :) :)

Not sure what to say about the port issue... that does sound weird, but hey, who are we to define weird?? :D

Haha... I got my CEA done yesterday with the rest of my every 3 weeks blood work and totally forgot to ask what my CEA reading was. We got so wrapped up with the "Should I/Shouldn't I" start the chemo again yesterday or give my body another week's break, I totally forgot to ask about the CEA :) Guess I better fire off an email to my oncologist and see what the reading was :)

C.

Fight for my love
Posts: 1530
Joined: Jun 2009

Great news,Lisa.Hope cea will continue to drop and your treatments go well.You are in my prayers as always.Take care.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Glad to hear your CEA is dropping, and headed back in the right direction again!

Have you gotten Emla cream to use before port access? It doesn't sting your skin. I have very sensitive skin and have no trouble with it. I cover it with Glad Press-n-Seal. I've never used that stuff in my kitchen, but it works wonderfully for protecting my clothes and keeping the cream on the port. I put it on liberally before my drive (45 minutes) to the oncologist. So by the time they take me back to access it has been on for an hour. It works great! Now that I am only on preventative Coumadin of 1mg, they are letting me get all my labs through my port. I love that. My best vein (inside left elbow) was blown at my last PET. Between all the scans, IV's, and labs I had my veins stuck multiple times per week. I never minded much, but I'm tired of it now. I'm glad to get everything through my port as originally intended. (As long as I can keep from emergency scans while on chemo, like what happened when I got my PE.) I LOVE having my power port for CT's, and not needing an IV started. The only thing they can't use it for is PET scans.

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Lisa, It is a great news. I'm really happy for you. Keep up the good work. -- Lucy

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

You know when I mentioned Gemzar & Avastin to my mom's oncologist at the James Cancer Center in Columbus, OH...the bulked at the idea and said Gemzar was a pancreatic cancer drug, not colon cancer.

But your news about your CEA is awesome! Good for you!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Krystie,

tell your doctors to refer to the clinical trial done at USC in Los Angeles under Dr. Lenz-there actually was a phase I and a phase II trial done on using Gemzar and Xeloda together for advanced patients with colorectal cancer. It IS normally a pancreatic cancer drug (also used for some forms of breast cancer & I think maybe kidney cancer). I know it's on the clinicaltrials.gov website- you might want to google it. The phase I trial had posted results and they were so-so. The phase II trial had better results than the phase I but, for some weird reason, the results weren't posted on the website yet. When I asked Dr. Lenz why they weren't posted, he didn't know & said they should be because all the data has been in for a while. He has the info- your doctors or even you could always write to or email Dr. Lenz for that info- his email is lenz@usc.edu & he usually responds within a day or two at most. Oh- you said you mentioned Gemzar and Avastin to your doctors- the trial was for Gemzar with Xeloda, not with Avastin. My onc added the Avastin, which is why I'm on all three.

Best wishes-
Lisa

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maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

oh Lisa that is good good news... I too am of the school...any downwards move of cea is a good move

good work

all the best
mags

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Gracie,

Glad you looked it up. Just so you know, they don't refer to it as being "shocked". When I use it, I can't feel anything at all- nothing at all like being shocked and no buzzing or even tingly feeling. It gives 30,000 Mhz & is calibrated in a certain way for an appropriate dose for humans to kill parasites (including bacteria and viruses, they claim), but not harm the human body. It does note that people who have pace makers should not use it. You know, our nervous system is made up of electrical impulses, so it does not surprise me that something like this can help. You have to be careful to use the right kind, though- there have been instances of people thinking "if this works, more should be even better"- well, it's not. There can definitely be too much of something, as with everything. I ordered mine through NaturalHealthSupply.com & it's called the Hulda Clark zapper from www.frequencygeneration.com.
A word of caution, just because they say they can't say that it "cures" anything or they'd get in big trouble, so they don't come out and say that and another website for zappers said they will not post any cancer testimonials due to the FDA, blah, blah, but they do have testimonials for it with other illnesses.

On a side note... I went in for chemo today & my white count was quite low- i was really bummed, as I had hoped it would be up and good. We'll see how it goes this week- I get a neulasta shot tomorrow. I can't believe the zapper or any of the other immune booster supplements could actually have sunk my white count- that had to be all the chemo- oh, how I hate chemo! Love it, but hate it, if you know what I mean.

Take care everyone,
Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm sure will keep dropping from now!

mom_2_3
Posts: 964
Joined: Nov 2008

Lisa,

So happy to hear about your CEA going down. I had taken a break from the board as I have been finding it just a bit too hard to hear the pain and loss some of our friends are experiencing. But when I couldn't stay away any longer and came back and read your update I was so happy!!!!

You deserve all the best. I am cheering you on!!!

Amy

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