Update on Vince

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mrsbotch
mrsbotch Member Posts: 349
edited March 2014 in Esophageal Cancer #1
Hi
The last time I posted I ranted and raved about my husband having fluid build-up in his abdomen. I have calmed down since then a bit.
I spoke once again to Chuck Hileman at UPMC and he sent an e-mail I had written to the oncologist Dr. Mark Gibson regarding all that was happening with Vince. Well I got an e-mail from Dr. Gibson this morning and he is going to phone me tonight. I am so happy.
I am in awe regarding the feedback I have gotten from these very busy Doctors. They are certainly in the business of helping people. I will let all of you know what he says after I speak with him.

I know alot of people on this site want to stay close to home for treatment as we once did. But I will tell you this you NEVER want this cancer to recur as Vince's has. It has been a nightmare. We live in Georgia and if we had known about Dr. Luketich in Feb 2009 we would have been on the 1st plane to Pittsburg to get his MIE and the well-needed chemo or radiation they would have had us do. We would not be in the position we are today.

So please DO YOURSELF A FAVOR don't ever underestimate EC. GET the very best you can get and if you have to travel so be it. IT will be so worth it in the end. I only hope that Dr. Gibson can help Vince now or give him some better direction.

I cannot stress too much how important this is. My husband is living on the fringes of hell now with this recurrance and with someone who was diagnosed in early stage this never should have happened to him.


Loretta, William, and Sherri are right GET THE BEST they have and then you will never have to second guess that you did or did not do the right thing.


Barb

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  • Unknown
    Unknown
    #2
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    This comment has been removed by the Moderator
  • mrsbotch
    mrsbotch Member Posts: 349
    #3
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    unknown said:

    This comment has been removed by the Moderator

    Thank you Sherri
    You are so right about how drs are so different in their opinions. It is so frustrating. I have no idea if there really may be help at UPMC but we will try. I do know that all of them have said the same thing . If they can help they will but if it is not possible they will not give us false hope. That is such a good thing.

    How is Jim doing now? I was going to call you but if you just want to talk thru private e-mail thats fine. As you read our cancer center was closed today due to snow. Living in the south when the weather is bad is like living on a deserted island. Nothing is open and people just don't drive. Its amazing.


    Write or call if you can. I'd love to hear from you


    Barb
  • linda1120
    linda1120 Member Posts: 389
    #4
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    YOU ARE SO RIGHT!
    I am living during the day in the hospital and traveling by a shuttle van to the hotel twice daily to get Jim the best care. I don't care, it has saved his life! If we had gone with the original surgeon who was going to do a Ivor-Lewis on Jim he would have died. Even with the MIE it has been touch and go. We are now on the upswing and waiting for the pathology reports. The surgeons said the tumor was encapsulated in the esophagus and the chemo shrunk the nodes, but I will not rest easy until we get those biopsy reports back. Your situation makes me even more emphatic that if there is even one cancer cell he HAS to have chemo.

    I am sorry you are having to go through all of this.

    Linda
  • mrsbotch
    mrsbotch Member Posts: 349
    #5
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    linda1120 said:

    YOU ARE SO RIGHT!
    I am living during the day in the hospital and traveling by a shuttle van to the hotel twice daily to get Jim the best care. I don't care, it has saved his life! If we had gone with the original surgeon who was going to do a Ivor-Lewis on Jim he would have died. Even with the MIE it has been touch and go. We are now on the upswing and waiting for the pathology reports. The surgeons said the tumor was encapsulated in the esophagus and the chemo shrunk the nodes, but I will not rest easy until we get those biopsy reports back. Your situation makes me even more emphatic that if there is even one cancer cell he HAS to have chemo.

    I am sorry you are having to go through all of this.

    Linda

    Thank you so much Linda for
    Thank you so much Linda for your post. I have been reading everything about your Jim and am praying for a good recovery.You have had your share of so many heartaches that now all you can do is be with him and hold him and love him.

    We don't know what the future holds for any of us but keep up those goos spirits and your love for Jim. This will help get you thru


    barb
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
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    Barb,You have shared a very
    Barb,

    You have shared a very important message. God bless you for doing that -- I too think my father chose to be close to home at first and that decision may well have resulted in his current situation. We will never know and we can't go back but I will always wonder. I too have watched and believe that for this cancer "the best" is the only option, "good enough" so you can stay close to home really isn't good enough. Getting treated at a major cancer center that specializes in Esophageal Cancer and sees hundreds of patients a year is the only option any of us should consider if there is anyway we can do it and insurance/finances don't stop us. And then there may be ways around that.

    I will keep Vince in my prayers and hope that the doctors at UPMC can help in some way. I will keep you updated about the clinical trial and what happens with my dad next week when we go to Houston at MD Anderson. Funny last year driving a couple of hours from my house to NY for treatment was too far, now he is driving over 8 hours each way to get to Houston and participate in the clinical trial. Perspective does some amazing adjustments to perceptions.

    Lots of hugs,
    Cindy
  • mrsbotch
    mrsbotch Member Posts: 349
    #7
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    unclaw2002 said:

    Barb,You have shared a very
    Barb,

    You have shared a very important message. God bless you for doing that -- I too think my father chose to be close to home at first and that decision may well have resulted in his current situation. We will never know and we can't go back but I will always wonder. I too have watched and believe that for this cancer "the best" is the only option, "good enough" so you can stay close to home really isn't good enough. Getting treated at a major cancer center that specializes in Esophageal Cancer and sees hundreds of patients a year is the only option any of us should consider if there is anyway we can do it and insurance/finances don't stop us. And then there may be ways around that.

    I will keep Vince in my prayers and hope that the doctors at UPMC can help in some way. I will keep you updated about the clinical trial and what happens with my dad next week when we go to Houston at MD Anderson. Funny last year driving a couple of hours from my house to NY for treatment was too far, now he is driving over 8 hours each way to get to Houston and participate in the clinical trial. Perspective does some amazing adjustments to perceptions.

    Lots of hugs,
    Cindy

    Thank you
    Yes I do think our perspective does change a lot. I am going to post a new discussion and will tell everyone what has transpired. Please let me know what the clinical trial drugs are . I would be so interested. I sure hope your dad gets the real meds and can beat this crappy cancer.


    love ya

    barb
  • Unknown
    Unknown
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  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #9
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    Hi Barb
    As you know I post on the ovarian boards and do not fully understand about Vince's fluid build up. Does he have to keep going into hospital for a drain or does he have a tap that can be opened up to drain off the fluid on a regular basis.

    I really hope you have some luck with the doctor you have mentioned here.

    Tina xx
  • Unknown
    Unknown
    #10
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    Tina Brown said:

    Hi Barb
    As you know I post on the ovarian boards and do not fully understand about Vince's fluid build up. Does he have to keep going into hospital for a drain or does he have a tap that can be opened up to drain off the fluid on a regular basis.

    I really hope you have some luck with the doctor you have mentioned here.

    Tina xx

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  • mrsbotch
    mrsbotch Member Posts: 349
    #11
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    unknown said:

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    Tap
    Hi


    Today the drained 3 liters from Vince's abdomen. The fluid when they first tested ir is malignant so I am assuming it still is. There is nothing he can do himself to drain it. He goes to radiaology at the hospital and they ultrasound him to find out where it is and then drain it. They are hoping chemo will take care ofit. So far it has not

    barb
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #12
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    mrsbotch said:

    Tap
    Hi


    Today the drained 3 liters from Vince's abdomen. The fluid when they first tested ir is malignant so I am assuming it still is. There is nothing he can do himself to drain it. He goes to radiaology at the hospital and they ultrasound him to find out where it is and then drain it. They are hoping chemo will take care ofit. So far it has not

    barb

    Hi Barb
    How aften does Vince have to have his abdoment drained? Chemo, in theory should kill the cancer cells that are making the fluid.

    You see:
    1. The cancer cells weep fluid (more so than naturally occurs) it has no where to go so it stays in the cavity.
    2. The cancer cells block all the drainage sites so the fluid is unable to drain away naturally.

    What the chemo will do (and my oncologist told me this in Thursday) of course is to kills of the cancer cells. Once they are gone so does the fluid and the body will re-absorb it naturally. I am so impatient for my fluid to be gone but my onc said it takes time and I have to be patient. So it may take a few infusions (I've had 2 so far) before you feel any effects.

    Regarding a tap.........I have read somewhere where a lady had a tap fitted to her chest (she had fluid arounbd her lungs like me) and the nurse comes in to her home or she goes to the clinic and it can be drained off that way. I'm not sure if they can do it with the tummy area?

    Cheers Tina xx
  • mrsbotch
    mrsbotch Member Posts: 349
    #13
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    Tina Brown said:

    Hi Barb
    How aften does Vince have to have his abdoment drained? Chemo, in theory should kill the cancer cells that are making the fluid.

    You see:
    1. The cancer cells weep fluid (more so than naturally occurs) it has no where to go so it stays in the cavity.
    2. The cancer cells block all the drainage sites so the fluid is unable to drain away naturally.

    What the chemo will do (and my oncologist told me this in Thursday) of course is to kills of the cancer cells. Once they are gone so does the fluid and the body will re-absorb it naturally. I am so impatient for my fluid to be gone but my onc said it takes time and I have to be patient. So it may take a few infusions (I've had 2 so far) before you feel any effects.

    Regarding a tap.........I have read somewhere where a lady had a tap fitted to her chest (she had fluid arounbd her lungs like me) and the nurse comes in to her home or she goes to the clinic and it can be drained off that way. I'm not sure if they can do it with the tummy area?

    Cheers Tina xx

    tapped
    Hi Tina

    Vince has been tapped 3 times since the week before Christmas. I think the reason the onc at UPMC said maybe the chemo was not working was because the tapping does not seem to clear it up. This time he had 3 liters drained. That is down 2 liters from the 2 previous times at once every 2 weeks.

    Now I do know you can get a catheter put in your lung area and do that at home but have never heard of anything for the abdomen.

    How many infusions do you have to have.



    As my British uncle used to say
    Cheerio Pip pip and double bubble gum

    Barb
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #14
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    mrsbotch said:

    tapped
    Hi Tina

    Vince has been tapped 3 times since the week before Christmas. I think the reason the onc at UPMC said maybe the chemo was not working was because the tapping does not seem to clear it up. This time he had 3 liters drained. That is down 2 liters from the 2 previous times at once every 2 weeks.

    Now I do know you can get a catheter put in your lung area and do that at home but have never heard of anything for the abdomen.

    How many infusions do you have to have.



    As my British uncle used to say
    Cheerio Pip pip and double bubble gum

    Barb

    Hi Barb
    I have to have 6 in total and my 3rd is on Thursday 20th Jan. They are every 3 weeks.

    TTFN (ta tar for now) I have heard people say cheerio and pip pip :)

    Take care Tina xx

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