Help Doctors Cant do Anything

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concernedgal
concernedgal Member Posts: 33
edited March 2014 in Colorectal Cancer #1
I posted about my brother being diagnosed in January with stage IV and starting chemo in February.

We've just been told that after 1 cycle its not working and the cancer is spreading rapidly and puzzling the doctors.

Due to ducts in the liver being blocked he has early jaundice and chemo is not an option. Theres nothing more they can do and my 32 year old brother has to wait till this disgusting disease takes his life whilst we sit and watch.

I cant stop crying and feel physically sick. He didnt even have the chance to fight it

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  • PamPam2
    PamPam2 Member Posts: 370 Member
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    So sorry you are all going
    So sorry you are all going through this terrible thing. Have you tried for second opinions or special cancer centers? I don't know where your at, or where your brother is receiving treatments, but some people have found other doctors and centers where they could help, after being told by their present doctors nothing could be done. Hoping there is some hope for your brother somewhere.
    Pam
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    MSK
    Have you tried for a second opinion at MSK? I know of 2 people that started out jaundiced and had an HAI pump implanted to direct chemo directly to the liver. Good luck and prayers to you and your family.
  • concernedgal
    concernedgal Member Posts: 33
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    mom_2_3 said:

    MSK
    Have you tried for a second opinion at MSK? I know of 2 people that started out jaundiced and had an HAI pump implanted to direct chemo directly to the liver. Good luck and prayers to you and your family.

    Thank you. I forgot to
    Thank you. I forgot to mention we are in the UK.

    No mention of chemo being directed straight into the liver. Just told somethings blocked, early sign of jaundice and the chemo isnt working.

    How can you from being diagnosed in January to being told early March chemo isnt working?! Can you tell me where MSK is? Might even go to America for a second opinion
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Thank you. I forgot to
    Thank you. I forgot to mention we are in the UK.

    No mention of chemo being directed straight into the liver. Just told somethings blocked, early sign of jaundice and the chemo isnt working.

    How can you from being diagnosed in January to being told early March chemo isnt working?! Can you tell me where MSK is? Might even go to America for a second opinion

    Hepatic Pump
    I'm very sorry to hear about your brother. I was fortunate to be able to go to MSK and I was able to take advantage of the pump. My tumor was around the hepatic artery. My case is different than your brother's but maybe you can inquire about Hepatic pumps and see if they have had any experience with this?
    Miracles can happen.
    -phil
    Link for their website
  • concernedgal
    concernedgal Member Posts: 33
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    PhillieG said:

    Hepatic Pump
    I'm very sorry to hear about your brother. I was fortunate to be able to go to MSK and I was able to take advantage of the pump. My tumor was around the hepatic artery. My case is different than your brother's but maybe you can inquire about Hepatic pumps and see if they have had any experience with this?
    Miracles can happen.
    -phil
    Link for their website

    Thanks Phil. I seen there
    Thanks Phil. I seen there was a part for international patients, just worried my brother will be too weak to go to America.

    Im so angry he didnt have a chance to fight it. Just 1 cycle and thats it. He wont even see his little girl grow up and it makes me so angry that this disgusting disease is able to take so many lives.

    I have prayed and all we have received since January is bad news after bad news. Hes only 32
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Thank you. I forgot to
    Thank you. I forgot to mention we are in the UK.

    No mention of chemo being directed straight into the liver. Just told somethings blocked, early sign of jaundice and the chemo isnt working.

    How can you from being diagnosed in January to being told early March chemo isnt working?! Can you tell me where MSK is? Might even go to America for a second opinion

    MSK and other info
    MSK stands for Memorial Sloan-Kettering and it's in Manhattan (New York City). I've not been there myself, since I live in California, but I've heard very good things about it.
    You can look it up on the internet for information. If you're considering flying to America, MD Anderson in Houston, Texas is rated as the #1 Cancer Center in America. Again, you can look it up on the internet.
    Also, I'd do some quick research on intra hepatic chemotherapy- I know it's also sometimes referred to as heated chemotherapy. I know that my liver specialist who performed liver surgery on me also does this and is very respected for it. He is Dr. Andrew Lowy at UCSD, Moores Cancer Center in San Diego, CA (the La Jolla location- there are two locations).

    I'm so sorry to hear what's happening with your brother. At this point, I'd not give up all hope- pray a lot and definitely immediately start researching and contacting some major cancer centers. Hopefully, you'll find a good one in the UK but, if not, I'd check out the above mentioned ones here in America.

    God bless,
    Lisa
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    lisa42 said:

    MSK and other info
    MSK stands for Memorial Sloan-Kettering and it's in Manhattan (New York City). I've not been there myself, since I live in California, but I've heard very good things about it.
    You can look it up on the internet for information. If you're considering flying to America, MD Anderson in Houston, Texas is rated as the #1 Cancer Center in America. Again, you can look it up on the internet.
    Also, I'd do some quick research on intra hepatic chemotherapy- I know it's also sometimes referred to as heated chemotherapy. I know that my liver specialist who performed liver surgery on me also does this and is very respected for it. He is Dr. Andrew Lowy at UCSD, Moores Cancer Center in San Diego, CA (the La Jolla location- there are two locations).

    I'm so sorry to hear what's happening with your brother. At this point, I'd not give up all hope- pray a lot and definitely immediately start researching and contacting some major cancer centers. Hopefully, you'll find a good one in the UK but, if not, I'd check out the above mentioned ones here in America.

    God bless,
    Lisa

    Vanderbilt-Ingram Cancer Center
    Do a web search for it...Thats where I went for surgery..Nashville Tennessee..14th best in the US but I would try MD Anderson in Houston Texas First...They are #1 in Cancer treatment......Good Luck and God Bless......Keep us updated and we will try and help you scramble for options and help..
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    that's so sad
    I'm so sorry about your brother. This has been a lot for your family to take in within a very short period of time. If there are other cancer centers you can try, I think it would be worth it to try to see if anyone can offer him some help (and hope).

    He's very fortunate to have such a loving sister.

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    tootsie1 said:

    that's so sad
    I'm so sorry about your brother. This has been a lot for your family to take in within a very short period of time. If there are other cancer centers you can try, I think it would be worth it to try to see if anyone can offer him some help (and hope).

    He's very fortunate to have such a loving sister.

    *hugs*
    Gail

    1 more thing.....
    When you contact these hospitals tell them your plight and ask if they will do any kind of pro-bono work or clinical trials he can get in immediately...You never know....an awful lot of doctors do a certain amount of pro-bono (patient cost free) work on and for patients of all types here in the United States. You may get lucky and contact one of them....
    God Bless you hun.....keep us posted as it goes...
  • rrob
    rrob Member Posts: 158
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    Sorry
    I'm so sorry. I wish I had magic words to help, but all I can say is prayers for your brother and you. I've heard so many great things about MD Anderson in Houston, TX. I would at least call them and see if they can give you any information. A colorectal patient I know said his doctors wouldn't do any more surgery and basically said he had about a year left, but he went to MD Anderson and they are going to do surgery at the end of March. So even here in the U.S., sometimes they offer hope when other doctors don't. Good luck and lots of prayers.

    Rebecca
  • concernedgal
    concernedgal Member Posts: 33
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    rrob said:

    Sorry
    I'm so sorry. I wish I had magic words to help, but all I can say is prayers for your brother and you. I've heard so many great things about MD Anderson in Houston, TX. I would at least call them and see if they can give you any information. A colorectal patient I know said his doctors wouldn't do any more surgery and basically said he had about a year left, but he went to MD Anderson and they are going to do surgery at the end of March. So even here in the U.S., sometimes they offer hope when other doctors don't. Good luck and lots of prayers.

    Rebecca

    Kind
    Thanks for the kind comments and suggestions.

    I dont even think he has a year. He seems to be rapidly deteriorating and we are all devastated.

    His little girl will be 2 years old next week and I cant believe that this is happening to him. Why he has he not had the chance to fight this disease and why are they giving up on him so easily? I hate when doctors say they cant understand why its spreading so fast.

    My brother said when he was diagnosed "trust me to develop super cancer". Im worried he wont have the energy for me to research about the centre in Texas as hes listened to everything the Drs have said so far and will probably think what's the point.

    There is no other cancer centre here in Scotland and the rest of the UK doesnt have any great centres.
  • pamalama
    pamalama Member Posts: 27
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    Kind
    Thanks for the kind comments and suggestions.

    I dont even think he has a year. He seems to be rapidly deteriorating and we are all devastated.

    His little girl will be 2 years old next week and I cant believe that this is happening to him. Why he has he not had the chance to fight this disease and why are they giving up on him so easily? I hate when doctors say they cant understand why its spreading so fast.

    My brother said when he was diagnosed "trust me to develop super cancer". Im worried he wont have the energy for me to research about the centre in Texas as hes listened to everything the Drs have said so far and will probably think what's the point.

    There is no other cancer centre here in Scotland and the rest of the UK doesnt have any great centres.

    So sorry
    Have you tried the Mater Hospital in Dublin my husband is from Ireland and although we are in the US his family is in Ireland and everyone says that in Ireland that the Mater is the place to go to seek treatment. I am so sorry to hear about this I will pray for your brother.
  • concernedgal
    concernedgal Member Posts: 33
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    pamalama said:

    So sorry
    Have you tried the Mater Hospital in Dublin my husband is from Ireland and although we are in the US his family is in Ireland and everyone says that in Ireland that the Mater is the place to go to seek treatment. I am so sorry to hear about this I will pray for your brother.

    Thank you.
    I spoke to him

    Thank you.

    I spoke to him today and he said hes not got the energy to be travelling anywhere.

    Im trying to research how to unblock liver ducts but my heads all over the place
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Thanks Phil. I seen there
    Thanks Phil. I seen there was a part for international patients, just worried my brother will be too weak to go to America.

    Im so angry he didnt have a chance to fight it. Just 1 cycle and thats it. He wont even see his little girl grow up and it makes me so angry that this disgusting disease is able to take so many lives.

    I have prayed and all we have received since January is bad news after bad news. Hes only 32

    I feel your pain
    I have 2 young boys, 15 and 9, and it was 5 years ago I was dx with stage IV colon cancer. They are my inspiration to not give up.
    You and your brother are in my thoughts, good energy to you all
    -phil
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
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    Thank you.
    I spoke to him

    Thank you.

    I spoke to him today and he said hes not got the energy to be travelling anywhere.

    Im trying to research how to unblock liver ducts but my heads all over the place

    I am so sorry
    It is so hard to accept that there is nothing more they can do , I would know , Be strong

    michelle
  • betina61
    betina61 Member Posts: 642 Member
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    So sorry
    It's not fair, your brother is so young,I can not accept that they (the doctors)are giving up so fast,at least you need a seconnd opinion,make that your priority now.I will be praying for him and all of you.
  • concernedgal
    concernedgal Member Posts: 33
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    So hard
    I visited him last night and he asked us all to be strong and not to cry when we visit him as it makes him feel bad.

    He was talking about writing his will and a few letters for his little girl and all hes worried about is the severe pain being controlled.

    It really is awful and dont know how we are going to cope. My grandma was just told and she has a heart condition and kept saying she should be the one to go before her grandson.

    I feel so angry and bitter about this whole disease. Has anyone ever heard of liver bile ducts being blocked because the tumor is growing?
  • CherylHutch
    CherylHutch Member Posts: 1,375
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    So hard
    I visited him last night and he asked us all to be strong and not to cry when we visit him as it makes him feel bad.

    He was talking about writing his will and a few letters for his little girl and all hes worried about is the severe pain being controlled.

    It really is awful and dont know how we are going to cope. My grandma was just told and she has a heart condition and kept saying she should be the one to go before her grandson.

    I feel so angry and bitter about this whole disease. Has anyone ever heard of liver bile ducts being blocked because the tumor is growing?

    Huggggs!
    I know it is sooo hard when you don't have answers at your fingertips. I am on my way out to my own doctor in 10 mins. so have to make this one short.

    I did a quick google search on "liver bile ducts cancer" and there are quite a few links... not sure how many of them would be applicable to your brother. Here is one of them:

    http://www.nlm.nih.gov/medlineplus/ency/article/000263.htm

    Keep searching... because answers can help you all through this.

    Hugggggs,

    Cheryl