awaiting Chemo

Robert W
Robert W Member Posts: 18
edited March 2014 in Colorectal Cancer #1
I had a history of Ulcerative colitis for 22 years. I was routinely check via colonscopy every 15-18 months. Upon my last examination in May they detected a small area that was cancerous. I went to Mt Sinai Hospital for a colostomy but ended up in a night mare. I had stage 4 cancer in my periteneal cavity. (18 of 31 lym nodes positive). During the surgery the surgeon cut my utters and compounded the problem. However, I do not fault him. He tried to remove as much of the tumor possible. I currently have a pair of tubes coming out of my back collecting urine (Nephrostomy). My second surgery took place 6 weeks later also at MT Sinai. They reconnected my utters to the bladder and intoduced into the peritneal cavity "Hot Chemo", They did it not once but twice. According to the three surgeons present, they completely cleared my abdomial cavity of all visible cancer. ( I am fortunate that the cancer did not spread outside the peritneal cavity). The plan is to give me FOFOX as a precaution to destroy any microscopic cancer cells that may have escaped. The questions I have to anyone reading this message are as follows: Has any one experienced the "Hot Chemo" treatment? Have they had any difficulty with it? Has anyone experience during their surgery, the cutting of the utters? If so how successful was the reconnection? My doctors are talking about a cure for me. I certainly hope they are correct.

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Robert,
    I am sorry to see that your having this trouble but you have come to the right place for info. I can only offer advice on the oxaliplatin but there will be others with more knowledge of your situation...Hang in there bud, help is on the way.......
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    No help from me but....
    Welcome and God Bless! Sounds like you've have more than your share of uh oh's!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #4
    Hi Robert
    Yours was a tough
    Hi Robert

    Yours was a tough case for you most certainly. I've never heard of that happening until your post...that's a tough thing to have to deal with.

    I also did 5fu pump, the Folfox regime, and Avastin for my treatments. Avastin can only be given to someone after so many months out of a surgical procedure, so this might be introduced to you at a later date...it's a drug that chokes off the blood supply to tumors.

    I have heard of the hot chemo treatment and have heard good things about it, but have had no personal experience with that one.

    I hope they can reconnect you back...you deserve that.

    As Buzzard said, more folks will be comin' over the hill to see if they can help you, hang in there.

    -Craig
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    hot chemo "bath"
    Robert,

    You might try posting a new thread entitled hot chemo wash (or something like that, I think it's maybe called a hot perintranatal wash- something like that). I know I remember hearing about someone on this board having it done about a year ago, but I can't remember who it was. Maybe if you title another thread like that, it would catch their eye. I don't have experience with it myself, but know that the dr. who did my liver surgery also does that- he's Dr. Lowy at UCSD/Thornton Hospital in San Diego.

    Wow- having your ureters cut during the surgery was awful (I think you mean ureters- the tubes running from the kidneys to the bladder). I've not heard of such a thing happening before.

    Hopefully you will find someone who has experience with what you've experienced. Even if not, howver, you'll find that this board is very helpful- I usually post medical questions I have here before I even ask my doctor- I find it's helpful to take solutions and ideas to my Dr. appts from here.

    Bless you,
    Lisa
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #6
    Hot chemo washes
    Hi Robert welcome to a club that no one really wants to belong to.

    My hubby had the hot chemo washes in 2006. When they finished his surgery, someone ( I assume a nurse) swished hot chemo in the periteneal cavity for 90 minutes. They then closed him up and inserted 4 drains in the cavity - they filled him up with a litre of the hot chemo, this they left in for 23 hours, drained it and kept him dry for 1 hour, and they started over again, and did this for 5 days. Bill did experience some nausea, but it wasn't too bad, and the presure from the chemo was bearable after a couple of days. They hoped to catch all the cancer cells floating around inside. The cancer was kept at bay for a while, but it did come back on his bladder which they had to remove in 2008.

    I wish you NED, our thougths and prayers are with you.

    Hugs,

    Sue
  • Robert W
    Robert W Member Posts: 18
    #7
    Buzzard said:

    Robert,
    I am sorry to see that your having this trouble but you have come to the right place for info. I can only offer advice on the oxaliplatin but there will be others with more knowledge of your situation...Hang in there bud, help is on the way.......

    Thanks
    Hello Buzzard...thanks for your kind words of support...I plan on hanging in there. I got too much to live for. One of the things I've learned during this ordeal is: it is easier to die than it is to live..I choose the life over death..hence I will do whatever it takes.

    Thanks again
    Robert W.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Sorry
    So sorry that you have been going through those problems and that you had to find our board, but you have come to a great bunch of people who will try and help you answer your questions and support you. I have no knowledge in what you are talking about, but wanted to welcome you to the board and hope that you have success in your upcoming chemo. I'm on the 5FU, oxy and lev (something) right now so that is my experience with chemo. I'm glad your doctors sound optimistic.

    Kim
  • Robert W
    Robert W Member Posts: 18
    #9
    CanadaSue said:

    Hot chemo washes
    Hi Robert welcome to a club that no one really wants to belong to.

    My hubby had the hot chemo washes in 2006. When they finished his surgery, someone ( I assume a nurse) swished hot chemo in the periteneal cavity for 90 minutes. They then closed him up and inserted 4 drains in the cavity - they filled him up with a litre of the hot chemo, this they left in for 23 hours, drained it and kept him dry for 1 hour, and they started over again, and did this for 5 days. Bill did experience some nausea, but it wasn't too bad, and the presure from the chemo was bearable after a couple of days. They hoped to catch all the cancer cells floating around inside. The cancer was kept at bay for a while, but it did come back on his bladder which they had to remove in 2008.

    I wish you NED, our thougths and prayers are with you.

    Hugs,

    Sue

    thank you
    Hello Canada Sue..they certainly changed the way they administer the hot chemo. I had it given to me by a surgical oncologist during surgery. He gave me two treatments for 90 minutes each after he and another surgeon removed any and all visible cancer cells. My tumor was located in the periteneal cavity and heading south to the colon. As long as my cancer did not spread to the liver, lungs or other vital organs, they felt I would benefit from the hot chemo. The plan now is to give me conventional chemo to treat the possibility that any cancer cells may have escaped. What complicates the matter is the severing of my ureters. They have reattached them to the bladder but I still have a foley, drainage tube, and two nepphrostomy bags. The oncologist wants several of these to be gone before he will start chemo. So I await the surgeon to give the oncologist the go ahead.
    I will say this is my first time on any of these boards and I am very pleased to see all the responces and suggestions that I received.
    Sue, how is your husband doing now? I trust he is on the road to recovery. What is NED mean. I know it must be something good, I also appreciate your kind thoughts and prayers.

    Robert W
  • Robert W
    Robert W Member Posts: 18
    #10
    Annabelle41415 said:

    Sorry
    So sorry that you have been going through those problems and that you had to find our board, but you have come to a great bunch of people who will try and help you answer your questions and support you. I have no knowledge in what you are talking about, but wanted to welcome you to the board and hope that you have success in your upcoming chemo. I'm on the 5FU, oxy and lev (something) right now so that is my experience with chemo. I'm glad your doctors sound optimistic.

    Kim

    thank you
    Hi Kim...thanks you for the welcoming I really appreciate it. I can use all the support I can get. If I may ask; How long have you been on chemo and have you had any side effects? If so what are they? I am not sure at the monet exactly which drugs they are planning to give me. I do know that FOLFOX (spelling) is going to be one of them.

    Thanks again
    Robert W
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #11
    Annabelle41415 said:

    Sorry
    So sorry that you have been going through those problems and that you had to find our board, but you have come to a great bunch of people who will try and help you answer your questions and support you. I have no knowledge in what you are talking about, but wanted to welcome you to the board and hope that you have success in your upcoming chemo. I'm on the 5FU, oxy and lev (something) right now so that is my experience with chemo. I'm glad your doctors sound optimistic.

    Kim

    Robert ...and Annabelle
    NED = No Evidence of Disease
    NEAD= No Evidence of Active Disease

    Some time back Trainer had a compilation of abbreviations and such, I will see if I can look back and bring it up to date for you and others in here

    and Annabelle..Its Leucovorin, and it enhances the chemo regimen...(I called it "loco" in the onc office)
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #12
    Buzzard said:

    Robert ...and Annabelle
    NED = No Evidence of Disease
    NEAD= No Evidence of Active Disease

    Some time back Trainer had a compilation of abbreviations and such, I will see if I can look back and bring it up to date for you and others in here

    and Annabelle..Its Leucovorin, and it enhances the chemo regimen...(I called it "loco" in the onc office)

    Loco
    Ahhhh good name for it. I can never remember the name of that and only remember it starts with a L. Thanks Buzzard.

    Kim
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
    Robert W said:

    thank you
    Hi Kim...thanks you for the welcoming I really appreciate it. I can use all the support I can get. If I may ask; How long have you been on chemo and have you had any side effects? If so what are they? I am not sure at the monet exactly which drugs they are planning to give me. I do know that FOLFOX (spelling) is going to be one of them.

    Thanks again
    Robert W

    Treatments
    I have had 6 treatments so far. My clinic called this morning and told me a lot of my blood tests from yesterday came back abnormal so they had to call the doctor to find out what to do. I had already been taking shots daily (for 5 days) for WBC to go up, but since my last shot was a week ago, it has already tanked, along with platelets and neurophil. Surprisingly I'm handling chemo better than I thought. I take Vitamin B6 for the neuropathy (tingling or numbness in hands and feet) so I'm fortunate I haven't had a lot of that. I do get an upset tummy after disconnect days for about 3-5 days but it is tolerable. Expect to get or be tired too. It comes with the chemo so rest when your body tells you. You will do just fine on the chemo.


    Like I said you will get a lot of support here. You have yourself a new family.

    Let us know when and what you will be taking when you find out more.

    Kim
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #14
    Robert W said:

    thank you
    Hello Canada Sue..they certainly changed the way they administer the hot chemo. I had it given to me by a surgical oncologist during surgery. He gave me two treatments for 90 minutes each after he and another surgeon removed any and all visible cancer cells. My tumor was located in the periteneal cavity and heading south to the colon. As long as my cancer did not spread to the liver, lungs or other vital organs, they felt I would benefit from the hot chemo. The plan now is to give me conventional chemo to treat the possibility that any cancer cells may have escaped. What complicates the matter is the severing of my ureters. They have reattached them to the bladder but I still have a foley, drainage tube, and two nepphrostomy bags. The oncologist wants several of these to be gone before he will start chemo. So I await the surgeon to give the oncologist the go ahead.
    I will say this is my first time on any of these boards and I am very pleased to see all the responces and suggestions that I received.
    Sue, how is your husband doing now? I trust he is on the road to recovery. What is NED mean. I know it must be something good, I also appreciate your kind thoughts and prayers.

    Robert W

    Robert
    My husband, Bill, has not faired so well. They went in to do surgery on 2 tumors in his liver in May (his 4th surgery), but they had to abort it as they found his lungs are covered with tumors, which are just now showing up on the CT scan. He is on 5200 mg of Xeloda per day, these are chemo pills.

    Praying for NED for you!

    Hugs,

    Sue
  • lesvanb
    lesvanb Member Posts: 905
    #15
    Hang in there!
    I don't know about the procedure you've had Robert but it sounds like your docs are positive. Many folks have added stuff about FOLFOX which I also had. I have residual grade 1 peripheral neuropathy which is manageable and appears to be a side effect that remains after treatment is done.

    Leslie
  • Robert W
    Robert W Member Posts: 18
    #16
    CanadaSue said:

    Robert
    My husband, Bill, has not faired so well. They went in to do surgery on 2 tumors in his liver in May (his 4th surgery), but they had to abort it as they found his lungs are covered with tumors, which are just now showing up on the CT scan. He is on 5200 mg of Xeloda per day, these are chemo pills.

    Praying for NED for you!

    Hugs,

    Sue

    getting back
    Hello Sue

    I am really sorry to hear the problem that your husband has. You must keep up his spirits. My best wishes and prayers go with him

    Robert
  • Robert W
    Robert W Member Posts: 18
    #17
    Annabelle41415 said:

    Treatments
    I have had 6 treatments so far. My clinic called this morning and told me a lot of my blood tests from yesterday came back abnormal so they had to call the doctor to find out what to do. I had already been taking shots daily (for 5 days) for WBC to go up, but since my last shot was a week ago, it has already tanked, along with platelets and neurophil. Surprisingly I'm handling chemo better than I thought. I take Vitamin B6 for the neuropathy (tingling or numbness in hands and feet) so I'm fortunate I haven't had a lot of that. I do get an upset tummy after disconnect days for about 3-5 days but it is tolerable. Expect to get or be tired too. It comes with the chemo so rest when your body tells you. You will do just fine on the chemo.


    Like I said you will get a lot of support here. You have yourself a new family.

    Let us know when and what you will be taking when you find out more.

    Kim

    treatsments
    Hi kim...I certainly will let you know what and when I begin chemo. I'm sorry to hear that your blood tests have trashed. Will they have to stop your treatment until your test results improve? Do they give you any medication for your upset stomach? Did the dr tell you about the B6? One of the things I was told by the oncologist is to expect the tingling. I will ask him if I should take the B6. Kim, I wish you a good response to the treatment and a complete recovery. My prayers go with you.

    Robert
  • Robert W
    Robert W Member Posts: 18
    #18
    lesvanb said:

    Hang in there!
    I don't know about the procedure you've had Robert but it sounds like your docs are positive. Many folks have added stuff about FOLFOX which I also had. I have residual grade 1 peripheral neuropathy which is manageable and appears to be a side effect that remains after treatment is done.

    Leslie

    Thanks Leslie for the heads up. I appreciate it.

    Robert
  • coolvdub
    coolvdub Member Posts: 408 Member
    #19
    Robert W said:

    Thanks Leslie for the heads up. I appreciate it.

    Robert

    I thought it was only me
    Hi Robert,
    Been lurking on the site for about a week now and read your post, thought I would finally post something.

    I went through the accidental severing of the Ureter during my surgery. They had a Urologist come in and fix it by inserting a stent in the Ureter and Bladder. I just had the stent removed yesterday. The first time the Urologist tried to remove the stent he couldn't due to scar tissue from the Foley Cathiter(sp). If they end up putting stents in to repair the Ureter, ask the Urologist if they have the option to use the stents that have a removal string like a tampon. Mine didn't so it was a painful process to have it removed. I think you may not have the option if they have to place the stents during surgery, but ask anyhow. I wish you good luck and a speedy recovery.

    Don
  • Unknown
    Unknown
    #20
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