problems with new port- update & good CEA news

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  • geotina
    geotina Member Posts: 2,111 Member
    #22
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    Lisa:
    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
    lisa42 Member Posts: 3,625 Member
    #23
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    update & good CEA news
    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
    sasjourney Member Posts: 395 Member
    #24
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    lisa42 said:

    update & good CEA news
    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

    Great News Lisa!
    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
    idlehunters Member Posts: 1,787 Member
    #25
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    sasjourney said:

    Great News Lisa!
    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

    Hey Girl!
    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
    Patteee Member Posts: 945
    #26
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    lisa42 said:

    update & good CEA news
    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

    Lisa- are they flushing the
    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
    lisa42 Member Posts: 3,625 Member
    #27
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    Patteee said:

    Lisa- are they flushing the
    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.

    Pattee
    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.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #28
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    lisa42 said:

    update & good CEA news
    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

    Yes!
    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
    Lori-S Member Posts: 1,277 Member
    #29
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    lisa42 said:

    update & good CEA news
    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

    Congratulations
    Congratulations on your good news, Lisa. I'll be hoping that it continues!
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #30
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    lisa42 said:

    update & good CEA news
    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

    Great news!
    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.
  • tina dasilva
    tina dasilva Member Posts: 641
    #31
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    lisa42 said:

    Pattee
    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.

    omg Lisa im so happy your
    omg Lisa im so happy your cea has got down
  • newperson
    newperson Member Posts: 76
    #32
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    Great news
    Lisa, It is a great news. I'm really happy for you. Keep up the good work. -- Lucy
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #33
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    lisa42 said:

    Thanks
    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

    Lanicain
    Probably spelled wrong, but they don't use numbing spray at my OOU, they use Lanicain, numbs it and no pain at all.
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #34
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    lisa42 said:

    update & good CEA news
    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

    Great news,Lisa.Hope cea
    Great news,Lisa.Hope cea will continue to drop and your treatments go well.You are in my prayers as always.Take care.
  • krystiesq
    krystiesq Member Posts: 240 Member
    #35
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    newperson said:

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

    awesome
    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
    lisa42 Member Posts: 3,625 Member
    #36
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    krystiesq said:

    awesome
    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!

    Krystie- Gemzar
    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
  • Unknown
    Unknown
    #37
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    lisa42 said:

    Krystie- Gemzar
    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

    This comment has been removed by the Moderator
  • maglets
    maglets Member Posts: 2,576 Member
    #38
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    unknown said:

    This comment has been removed by the Moderator

    cea
    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
    lisa42 Member Posts: 3,625 Member
    #39
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    unknown said:

    This comment has been removed by the Moderator

    not considered shock
    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
    pepebcn Member Posts: 6,331 Member
    #40
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    lisa42 said:

    not considered shock
    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

    good news Lisa
    I'm sure will keep dropping from now!
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #41
    Options
    lisa42 said:

    update & good CEA news
    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

    Good news
    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.

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