5FU Leak

bs1234
bs1234 Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hi! I've been watching this message board since my husband was diagnosed with colon cancer in May and have found it very helpful. He had surgery, is stage 3 (cancer in one lymph) and is now going through chemo - oxy and 5FU. Everything has been going very well, almost no side effects, until today. His port apparently leaked during the night while he was wearing the pump for 5FU. Has anyone had this problem and how big a problem is it really? They gave him an antibiotic and he's supposed to go back tomorrow - to see how things look, I guess. Any words of wisdom or other suggestions? Thanks in advance!

Comments

  • Kanort
    Kanort Member Posts: 1,272 Member
    #2
    Hi,

    I am sorry for your husband's diagnosis, but glad to hear you have found our site helpful. I, too, was stage 3 and received the same treatment as your husband. On my 12th treatment my tubing started to leak. I went immediately to my cancer center and saw my oncologist. They fixed the problem and I completed the course. My doctor felt that not enough had leaked to cause a problem and it didn't come in contact with my skin. I'm sure he will be fine, but keep us posted.

    Hugs,

    Kay
  • KariK
    KariK Member Posts: 5
    #3
    Same thing happened to me. 1st cycle of folfox the infusion pump leaked all night. There was a pin size hole in the tubing. Went to Oncology in the morning and the nurse said not to worry as 5FU is not toxic to the skin as some chemo is. I just lost one whole cycle of 5FU.
  • bs1234
    bs1234 Member Posts: 2
    #4
    KariK said:

    Same thing happened to me. 1st cycle of folfox the infusion pump leaked all night. There was a pin size hole in the tubing. Went to Oncology in the morning and the nurse said not to worry as 5FU is not toxic to the skin as some chemo is. I just lost one whole cycle of 5FU.

    That's wild because they're acting like this is a really big deal. AND he's been pretty sore with it - had a lot of trouble sleeping last night and it hurts to lift or use his arm. We'll just watch it until he goes in today and see what they say then. Thanks to both of you for the help!
  • cnewtrn
    cnewtrn Member Posts: 28
    #5
    Starting 5 fu

    Hello.  My father is about to start 5 fu after just completing r- chop for lymphoma.  Can you tell me how this chemo is tolerated? Are there many side effects?  He is just getting back on his feet with successful treatment, I hate to see him get knocked down so quickly.

    thnak you and I welcome any words of wisdom that you can give me with this chemo

  • renw
    renw Member Posts: 282 Member
    #6
    Could be worse:

    Could be worse: http://www.mcrc4.com/?p=131

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #7
    renw said:

    Could be worse:

    Could be worse: http://www.mcrc4.com/?p=131

    Geez Ren!  That is scary.   I

    Geez Ren!  That is scary.   I was always a little nervous when my husband came home with the pump - especially when he was holding the baby.  Glad your kid was there to let you know!

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #8
    jen2012 said:

    Geez Ren!  That is scary.   I

    Geez Ren!  That is scary.   I was always a little nervous when my husband came home with the pump - especially when he was holding the baby.  Glad your kid was there to let you know!

    You didn't say where it

    You didn't say where it leaked,  outside of the skin  or  under the skin???   I was given a hazmat clean up kit of some kind I have here at home in case of a spill or leak.    Ren I couldn't open  your link,  I'll try again later.....

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    renw said:

    Could be worse:

    Could be worse: http://www.mcrc4.com/?p=131

    Chemoembolization

    Hi Ren, I was just taking a quick look at your blog (I'm heading home in a minute) but I saw on a post where you said you were stopping chemo and starting the journey that's taken you to Germany. In there you mentioned Chemoembolization (defined below) This sounds incredibly similar to what I had done when I had my HAI pump installed. Prior to the pump I had Avastin that cut the blood flow to the large liver tumor(s) I had which shrunk them. Then during my liver resection I had the HAI pump installed and that delivered chemo (FUDR? I think, it was almost 9 years ago) directly to my liver via a catheter. I've had no liver issues since I had this done in Sept 2004.

    It's interesting (to me) that some of the treatments that you are getting are similar to things I had done almost 10 years ago.
    I wish you, and everyone, success in the paths you choose.
    -phil 


    "Chemoembolization is a procedure in which the blood supply to the tumor is blocked surgically or mechanically and anticancer drugs are administered directly into the tumor. This permits a higher concentration of drug to be in contact with the tumor for a longer period of time"

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #10
    PhillieG said:

    Chemoembolization

    Hi Ren, I was just taking a quick look at your blog (I'm heading home in a minute) but I saw on a post where you said you were stopping chemo and starting the journey that's taken you to Germany. In there you mentioned Chemoembolization (defined below) This sounds incredibly similar to what I had done when I had my HAI pump installed. Prior to the pump I had Avastin that cut the blood flow to the large liver tumor(s) I had which shrunk them. Then during my liver resection I had the HAI pump installed and that delivered chemo (FUDR? I think, it was almost 9 years ago) directly to my liver via a catheter. I've had no liver issues since I had this done in Sept 2004.

    It's interesting (to me) that some of the treatments that you are getting are similar to things I had done almost 10 years ago.
    I wish you, and everyone, success in the paths you choose.
    -phil 


    "Chemoembolization is a procedure in which the blood supply to the tumor is blocked surgically or mechanically and anticancer drugs are administered directly into the tumor. This permits a higher concentration of drug to be in contact with the tumor for a longer period of time"

    Hey Phil

    I see The Dark Side of the Moon in your pic:)

    I always thought you were an okay guy:)  Now, this proves it:)

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #11
    Sundanceh said:

    Hey Phil

    I see The Dark Side of the Moon in your pic:)

    I always thought you were an okay guy:)  Now, this proves it:)

    LOL

    That be true! You should see this image larger. It's very trippy

  • renw
    renw Member Posts: 282 Member
    #12
    PhillieG said:

    Chemoembolization

    Hi Ren, I was just taking a quick look at your blog (I'm heading home in a minute) but I saw on a post where you said you were stopping chemo and starting the journey that's taken you to Germany. In there you mentioned Chemoembolization (defined below) This sounds incredibly similar to what I had done when I had my HAI pump installed. Prior to the pump I had Avastin that cut the blood flow to the large liver tumor(s) I had which shrunk them. Then during my liver resection I had the HAI pump installed and that delivered chemo (FUDR? I think, it was almost 9 years ago) directly to my liver via a catheter. I've had no liver issues since I had this done in Sept 2004.

    It's interesting (to me) that some of the treatments that you are getting are similar to things I had done almost 10 years ago.
    I wish you, and everyone, success in the paths you choose.
    -phil 


    "Chemoembolization is a procedure in which the blood supply to the tumor is blocked surgically or mechanically and anticancer drugs are administered directly into the tumor. This permits a higher concentration of drug to be in contact with the tumor for a longer period of time"

    chemoembolization is somewhat

    chemoembolization is somewhat different to what you describe. They thread a catheter from your groin into the liver through the femoral and into the hepatic artery. Once in place, they inject the chemo mix into the liver. straight after, an embolizing agent is added. This clogs up the hepatic arteries so that the chemo can not get outside of the liver and stays where it is needed. Its a very local treatment, much higher chemo concentrations can be used and I have experienced no side effects associated with systemic chemo that poisons everything. I have actually seen positive results within just 3 hours, but this is just the first step to help break down the tumour structures so that immuno based therapies can get easier access to the tumour cells. Chemoembolization can then be repeated as often as needed. I have met people who had 12 rounds or more of the treatment and basically use it to keep their tumours in check over the span of years. Also other organs can be treated with this procedure not just liver.

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #13
    renw said:

    chemoembolization is somewhat

    chemoembolization is somewhat different to what you describe. They thread a catheter from your groin into the liver through the femoral and into the hepatic artery. Once in place, they inject the chemo mix into the liver. straight after, an embolizing agent is added. This clogs up the hepatic arteries so that the chemo can not get outside of the liver and stays where it is needed. Its a very local treatment, much higher chemo concentrations can be used and I have experienced no side effects associated with systemic chemo that poisons everything. I have actually seen positive results within just 3 hours, but this is just the first step to help break down the tumour structures so that immuno based therapies can get easier access to the tumour cells. Chemoembolization can then be repeated as often as needed. I have met people who had 12 rounds or more of the treatment and basically use it to keep their tumours in check over the span of years. Also other organs can be treated with this procedure not just liver.

    That's Great!

    It's even more localized than what I had done but it's similar in that they deliver the chemo right to the liver so it's targeted but what you're doing is even more targeted. I had systemic chemo at the time since I had my colon resection, liver resection, gallbladder removed, and some lymph nodes removed. I have been a believer (and a beneficiary) of the use of more targeted therapies and it's my belief that these are the areas where there will be much higher success rates than the very old practice of "nuking" the entire body with the older chemos.

    I have realized for a long time that I'm more the exception to the rule for most stage IV colon cancer patients. That's not to say that how I approached treatment can't work for another, but it does say that we all respond differently to whatever treatment we use. Nothing works 100% of the time.

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #14
    24carotgold

    "5fu comes with lots of long term side effects, it does not cure cancer, it does not shrink tumors".

    You seem to have left out "for me". Please try to keep in mind that everyone responds differently to treatments. There have been plenty of people who went the nutritional route and have died too. I'm very glad you had success with your choice, but there is no "one size fits all" when it comes to treating cancer. People often forget that fact...

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #15
    renw said:

    chemoembolization is somewhat

    chemoembolization is somewhat different to what you describe. They thread a catheter from your groin into the liver through the femoral and into the hepatic artery. Once in place, they inject the chemo mix into the liver. straight after, an embolizing agent is added. This clogs up the hepatic arteries so that the chemo can not get outside of the liver and stays where it is needed. Its a very local treatment, much higher chemo concentrations can be used and I have experienced no side effects associated with systemic chemo that poisons everything. I have actually seen positive results within just 3 hours, but this is just the first step to help break down the tumour structures so that immuno based therapies can get easier access to the tumour cells. Chemoembolization can then be repeated as often as needed. I have met people who had 12 rounds or more of the treatment and basically use it to keep their tumours in check over the span of years. Also other organs can be treated with this procedure not just liver.

    Ren

    It appears as though Steves liver tumors may be no longer be responding to Folfiri. He has had a total of 27 sessions over two years. If he goes the TACE route, do you think they would avoid Irenotecan as he is not responding systemically or would he be likely to respond due to it being applied locally in much higher dosages? Is Avastin one of the drugs they use on your tumors through chemoembolization? Steve can't have Avastin systemically, I wonder if he could have it locally? (blood clots) How does this procedure make you feel? Are there many side effects? I am really hoping to find some way of treating Steves liver in a way that he feels good and we can travel and do things. It would be nice to get away from the systemic chemo for a while.

    Thanks
  • renw
    renw Member Posts: 282 Member
    #16
    Chelsea71 said:

    Ren

    It appears as though Steves liver tumors may be no longer be responding to Folfiri. He has had a total of 27 sessions over two years. If he goes the TACE route, do you think they would avoid Irenotecan as he is not responding systemically or would he be likely to respond due to it being applied locally in much higher dosages? Is Avastin one of the drugs they use on your tumors through chemoembolization? Steve can't have Avastin systemically, I wonder if he could have it locally? (blood clots) How does this procedure make you feel? Are there many side effects? I am really hoping to find some way of treating Steves liver in a way that he feels good and we can travel and do things. It would be nice to get away from the systemic chemo for a while.

    Thanks

    You'll find all the details

    You'll find all the details on my blog. mcrc4.com

    In a nutshell, I had severe pains after the procedure, by severe I mean an order of magnitude greater than anything I had ever experienced, and that was with morphine. Only lasted 2 days however. Note: this was not a typical reaction to the treatment and most people experience little or no discomfort.

    I experienced none of the typical chemo symptoms. No nausea, no oxaliplatin neuropathy/reaction to cold etc. Its not perfect however, and the chemo may leak out of the liver. I assume in my case that this did not happen.

    I have been told that TACE can be effective even once you have resistance, as the chemo concentrations used are much greater than you could ever do with systemic chemotherapy.  i recall reading somewhere that the TACE concentration can be 100 times higher.

    I saw an MRI before and three hours after the procedure, and there was a visible change in my tumours. Few days later an ultrasound showed significant necrosis, so I think this is a very interesting treatment with little to none of the typical chemo side effects.

    I am going in for anther session in two weeks and will repeat every month if it keeps being effective.

    I should also note that in addition to TACE I am doing several other immunotherapy treatments concurrently to hopefully stop further metastasis developing. TACE will only treat the organ being targetted so something to keep in mind if there are other tumour sites.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #17
    renw said:

    You'll find all the details

    You'll find all the details on my blog. mcrc4.com

    In a nutshell, I had severe pains after the procedure, by severe I mean an order of magnitude greater than anything I had ever experienced, and that was with morphine. Only lasted 2 days however. Note: this was not a typical reaction to the treatment and most people experience little or no discomfort.

    I experienced none of the typical chemo symptoms. No nausea, no oxaliplatin neuropathy/reaction to cold etc. Its not perfect however, and the chemo may leak out of the liver. I assume in my case that this did not happen.

    I have been told that TACE can be effective even once you have resistance, as the chemo concentrations used are much greater than you could ever do with systemic chemotherapy.  i recall reading somewhere that the TACE concentration can be 100 times higher.

    I saw an MRI before and three hours after the procedure, and there was a visible change in my tumours. Few days later an ultrasound showed significant necrosis, so I think this is a very interesting treatment with little to none of the typical chemo side effects.

    I am going in for anther session in two weeks and will repeat every month if it keeps being effective.

    I should also note that in addition to TACE I am doing several other immunotherapy treatments concurrently to hopefully stop further metastasis developing. TACE will only treat the organ being targetted so something to keep in mind if there are other tumour sites.

    Thanks for this info, Ren. I
    Thanks for this info, Ren. I have just checked out your blog. You really have had a rough time of it. It was very interesting reading. Could not get over your list of supplements. OMG! That has to be very expensive and time consuming. It's obvious your giving this fight your all. I find it interesting that people can convince their onc's into scripts for metformin. I couldn't even get cimetidine for Steve. Fortunately we live close to the US border where it's OTC. Anyways, hopefully all your efforts pay off soon and you get some good results. Thanks for taking the time to document everything for the purpose of helping others.
  • Unknown
    Unknown
    #18
    Chelsea71 said:

    Ren

    It appears as though Steves liver tumors may be no longer be responding to Folfiri. He has had a total of 27 sessions over two years. If he goes the TACE route, do you think they would avoid Irenotecan as he is not responding systemically or would he be likely to respond due to it being applied locally in much higher dosages? Is Avastin one of the drugs they use on your tumors through chemoembolization? Steve can't have Avastin systemically, I wonder if he could have it locally? (blood clots) How does this procedure make you feel? Are there many side effects? I am really hoping to find some way of treating Steves liver in a way that he feels good and we can travel and do things. It would be nice to get away from the systemic chemo for a while.

    Thanks

    Irenotecan

    I can't speak for the TACE/Irenotecan, but over a long period of time the receptor sites for the Irenotecan become desensitized and will not respond to it. In my case, now that I'm on Erbitux we have returned to the Irenotecan (Campostar) because the Erbitux sensitizes (reopens) those Irenotecan channels so it will get to those cancer cells again. which brings up another point I have mentioned before, knowing the order of the infusions. Erbitux infusion before Irenotecan infusion each session. A few weeks of both, then off the Irenotecan for a week to let the Erbitux get those receptor sites opened up. Avastin may not be possible depending on the surgical procedure to install the TACE. Avastin "disolves" newly formed and forming vascular tissue such as incisions which are trying to heal. That's how it stops new cancer cells from getting a blood supply. Avastin has a 21 day half life, so any elective or non-urgent surgery has to be done at least 4 -6 weeks after stopping Avastin. I cannot emphasize how important it is to know as much as you can from good sources so you can ask your doc the right questions. And not every infusion nurse is as dedicated to her own knowledge base as most of the other nurses.  I still ask every time,"What's in that bag, what's the dose, and the infusion rate"? Pharmacists and nurses are humans, we all make mistakes. The more informed you are the better you will feel about all that is going on. 

    Happy Trails

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