Any survivors willing to call me? Please Please help me save my husband

2

Comments

  • offutt9
    offutt9 Member Posts: 88 Member
    #22
    MrsTigger said:

    dad has liver cancer
    Hey Barbara my name is Shay! My dad was told April of last year that he has hcc as well they told him that only treatment out there for him was nexavar! However he can not take the full dose of it cause it made him sick! I'm not sure if his Dr knows what he is doing or not! He doesn't seem to answer many questions I ask! If I can get some advice to help my dad It would be very appreciated. I am 34 years old and trying to do everything I can do to help him and my mom out! I live in South Carolina. Anything from anyone would help. Not sure of a lot of questions to ask the Dr either. My dad has hcc with spots on his spine that came from the liver as well. He doest have hepatitis nor is he a drinker! Thanks for anyone who can help!

    MrsTigger.

    liver cancer
    Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara
  • offutt9
    offutt9 Member Posts: 88 Member
    #23
    MrsTigger said:

    dad has liver cancer
    Hey Barbara my name is Shay! My dad was told April of last year that he has hcc as well they told him that only treatment out there for him was nexavar! However he can not take the full dose of it cause it made him sick! I'm not sure if his Dr knows what he is doing or not! He doesn't seem to answer many questions I ask! If I can get some advice to help my dad It would be very appreciated. I am 34 years old and trying to do everything I can do to help him and my mom out! I live in South Carolina. Anything from anyone would help. Not sure of a lot of questions to ask the Dr either. My dad has hcc with spots on his spine that came from the liver as well. He doest have hepatitis nor is he a drinker! Thanks for anyone who can help!

    MrsTigger.

    liver cancer
    Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara
  • CrazywithFear19
    CrazywithFear19 Member Posts: 5
    #24
    northa914 said:

    TACE
    Hi Cheryl:

    The type of surgery I’ve had is TACE (Transarterial Chemoembolization), where chemotherapy drugs are dispensed via a catheter that is inserted directly into the liver as close as possible to the tumor(s) being treated. The catheter is placed into the femoral artery, then passed through the hepatic artery into the tumor(s) arterial system. Once in position, chemo drugs are fed into the liver, then the arterial system is “plugged up” with an embolizing agent. This allows the tumor to be more directly treated for a longer period of time, and also starves the tumor of part of its blood supply. Individuals who aren’t able to tolerate such a direct dose of chemo sometimes are treated with the embolization only. From my understanding, TACE is used against primary HCC, metastatic gastrointestinal cancers, and certain other metastatic cancers. I’ve had four procedures so far, the last being on January 27th of this year. My first was on December 14th of 2010. In actuality I wasn’t a likely candidate due to the number and size of my metastatic liver lesions, but the surgeon who reviewed my case decided it was worth a try and so far we’ve been successful. I think part of the reason he gave me a chance is that I was in relatively good health in spite of the cancer and my liver was and continues to function normally. I did have a problem with my insurance company when my primary oncologist requested a consultation for TACE, but not because they declined the procedure. They kept authorizing appointments at facilities that didn’t perform TACE, and the facilities I asked to be sent to weren’t on my insurance company’s approved list. After two months of the runaround, I was finally allowed to go out-of-network, and am now being seen for special procedures at USC-Norris in Los Angeles. My liver lesions were initially deemed unresectable; however, my surgeon now says that I’m doing “remarkably well”, and he’s thinking that if we can shrink the tumors enough with TACE and perhaps RFA (burning the lesions from the inside out, as opposed to treating them from the outside in as is the case with TACE) he may be able to resect. Have you gotten a second opinion about the liver lesion and options for treatment, or is this also a problem for your insurance company? My lesions that are being treated were much larger than yours (5cm to 8.3 cm), and I have quite a few (infested is a fitting description).

    I hope this helps. If you want to chat further about this, please feel free to email me at the email address I listed in my previous post. I’m more than happy to give you whatever information and support you need!

    Andrea

    How to deal with it??
    Hi, I am new to this site. My fiancee has just been diagnosed with advanced cholangiocarcinoma and was told that life expectancy is around 6 months. This has been such a shock to us as he has always been diet conscious and an exercise freak. He has always been in good health and looks younger than his actual age of 50. Both of us were going to get married later this year and this has been such a shock to both of us.

    I have been going crazy with fear and my emotions have been on a non-stop rollercoaster of fear, depression, anger and grief. He will be seeking a 2nd opinion in Anderson MD and I am fearful that they will say that nothing can be done. His first report in El Paso stated 75% of the right lobe of his liver is infected with numerous cancer cells and that there is a big tumour of around 5 cm. It also stated that his bile duct is infected but it is unsure if his pancreas is infected. The oncologist in El Paso said that it was not operable and referred him to MD Anderson.

    I don't know how to deal with this and I keep thinking of the numerous possible outcomes, which not a single one is good. Meanwhile, it is painful to watch him suffer abdominal pain, loss of appetite, fatigue and resignation of his impending doom. I keep hoping and praying that something can be done instead of dreading the death sentence in 6 months.

    Please help!

    Debbie
  • MrsTigger
    MrsTigger Member Posts: 14
    #25
    offutt9 said:

    liver cancer
    Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

    Hey Barbara
    Hello sorry took so long to reply back my dad had gotten sick and got put in the. Hospital yesterday. Been busy trying to help take care of him. I had asked my dads Dr about that and he said it would not work for him since he has 5 other spots thrum out his body. But then again I don't think his Dr really knows to much. The Dr said for hcc the only med out there is nexavar and there is nothing else they can do. I am trying to find him another good Dr close by where we live at. My parents are only getting SS ck so they don't have much money to travel on. Right now I am out of work as well due to a knee injury. We live close to Charleston SC. I heard there was some good Dr at Mayo clinic in Jacksonville Fla that is about 4 hrs from here plus my sister lives there. So I am going to try and get him there! Ive got to try and look all this up. Congrats hopefully it will remain away. I'm glad to hear good news. I'm going to let my dad know so he can get his faith back up. Thank you so much. Anymore info will be appreciated by my parents and I. Thanks again!

    Sincerly
    Shay.
  • shinmin1500
    shinmin1500 Member Posts: 11
    #26
    cnatekar said:

    Here is My Fathers Story
    My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

    Chetan

    My Husband and Liver Cencer
    My Husband was diagnosed with Liver cancer on June 11. When we have done biopsy on June 29, the doctors said there are multiple tumors (6cm,7cm and 12cm) in my husband liver and also spread to the liver. He has been so tired and lossing lots of weights about 40 lbs. he can not eat too much and it makes him full even he has small meals for 4 or 5 times a day. Gives him healthy food (orgainc) as much as I can. We have seen oncology doctor on 17th of July at SF General Hospital and planed to give my husband "Sorafenib" for two months. If this medicine works, he has 2 years to live and if not then he has only 6 months. He said no sign of cancer has spread to blood and other parts.

    Do you know what are the side affect of sorafenib?
  • mek09
    mek09 Member Posts: 1
    #27
    cnatekar said:

    Here is My Fathers Story
    My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

    Chetan

    My father is suffering from advanced liver cancer.
    Hi cnatekar,

    My father has been diagnosed with liver cancer and we found this out in august this year after a series of scans and blood tests. We have contacted the best liver cancer specialists and hepatologists in India and all of them are not able to help and say that disease is too advanced. He has been put off sorafenib too as his serum bilirubin has increased the prescribed values for sorafenib intake. His condition is degrading with loss of appetite with too much of weakness. Unfortunately, due to weak body resistance he has been catching infections and the abdominal troubles like indigestion worsens it all. He is 52 years old and we are based in Delhi, India. If you come across this post, please do help me by letting me know about the exact treatment procedure of your father's disease. Which homeopathy and ayurvedic medicine has your father been taking? Please do give me the details so that I can try all possible means to fight my father's illness. Also let me know where can I take him for treatment out of India and also within India.
    My email address is meha09@gmail.com
  • Carol20
    Carol20 Member Posts: 3
    #28
    HCC
    Can you elaborate on HCC of the liver, what the abbreviation means? Thanks, Carol
  • Carol20
    Carol20 Member Posts: 3
    #29
    offutt9 said:

    liver cancer
    Hello!!! My name is Barbara and I have angiosarcoma of the liver...9 years ago, they gave me three months to live..This cancer not treatable other than hit and miss options..is a very rare form of liver cancer..I have never drank or smoked..Keep the FAITH!! Never give up hope. I Had RFA done on several lesions..It is still there, but not growing and hasn't in 4 years...God said He would heal me and I believe Him..I'll be praying for both of you...In Gods Love Barbara

    Thank you for your amazing story!
    Thanks for your amazing story and will to live! I am a cancer survivor and ER nurse and ski patrol. I had early breast cancer and now have what were blood blisters on my breat. I hike a lot, do aerobics, Zumba but am wondering? I sent a picture to my doc, then will consult his father my breast care doc (surgeon and the whole 9 yards, breast specialist). Unfortunately the watch and see plan does not work with angiosarcoma. Hopefully it is nothing, but, it should raise suspicion since I had radiation of the breast mammosite near by. Carol20
  • XtremediverHCC
    XtremediverHCC Member Posts: 63 Member
    #30
    Carol20 said:

    HCC
    Can you elaborate on HCC of the liver, what the abbreviation means? Thanks, Carol

    HCC
    HCC is an abbreviation of Hepatocellular Carcinoma, primary Liver cancer. I have been treated for it now twice in 6 years but still going strong.
  • Carol20
    Carol20 Member Posts: 3
    #31
    Carol20 said:

    Thank you for your amazing story!
    Thanks for your amazing story and will to live! I am a cancer survivor and ER nurse and ski patrol. I had early breast cancer and now have what were blood blisters on my breat. I hike a lot, do aerobics, Zumba but am wondering? I sent a picture to my doc, then will consult his father my breast care doc (surgeon and the whole 9 yards, breast specialist). Unfortunately the watch and see plan does not work with angiosarcoma. Hopefully it is nothing, but, it should raise suspicion since I had radiation of the breast mammosite near by. Carol20

    Angiosarcoma
    What I mean was, it could have been my bra causing the lesions in all that vigorous activity. But, never got them from that before? My OBGYN said see a dermatologist, not a cancer doc. ??? I would want a proper biopsy that does not expose the rest of my body to it, etc. Not all providers do this? Just have to plod along and find someone. I wish I was in Boston at Women's and Children's Hospital because of the literature I have seen in the scientific journals from there. I am now on the West coast!
  • sagepatty
    sagepatty Member Posts: 2
    #32
    CrazywithFear19 said:

    How to deal with it??
    Hi, I am new to this site. My fiancee has just been diagnosed with advanced cholangiocarcinoma and was told that life expectancy is around 6 months. This has been such a shock to us as he has always been diet conscious and an exercise freak. He has always been in good health and looks younger than his actual age of 50. Both of us were going to get married later this year and this has been such a shock to both of us.

    I have been going crazy with fear and my emotions have been on a non-stop rollercoaster of fear, depression, anger and grief. He will be seeking a 2nd opinion in Anderson MD and I am fearful that they will say that nothing can be done. His first report in El Paso stated 75% of the right lobe of his liver is infected with numerous cancer cells and that there is a big tumour of around 5 cm. It also stated that his bile duct is infected but it is unsure if his pancreas is infected. The oncologist in El Paso said that it was not operable and referred him to MD Anderson.

    I don't know how to deal with this and I keep thinking of the numerous possible outcomes, which not a single one is good. Meanwhile, it is painful to watch him suffer abdominal pain, loss of appetite, fatigue and resignation of his impending doom. I keep hoping and praying that something can be done instead of dreading the death sentence in 6 months.

    Please help!

    Debbie

    Hopeful
    Hi my name is Patricia Moreno. My husband Antonio Moreno was diagnosed with liver Cancer. He never stopped drinking, and he was already tired of all the pain that this thing caused him throughout the years. He was my ex husband. On the 8th of October we got remarried by the Deacon that gave him his last rites.....he was so happy and we also took him home on his wishes and put him on Hospice....My life without him is sad and I am so tired of crying for him. Just my advice to you is to keep on going, dont stop and love eachother each and everyday,,there is a God and he can provide you with a miracle. And if this is not in the book for your fiancee, just thank God that he doesn't suffer . My husband lost his short but courageous battle with live Cancer.oN the 11th of October 2012..May you rest in peace my love,,,...Take care and God bless us all..Patricia Moreno
  • kknearem
    kknearem Member Posts: 2
    #33
    offutt9 said:

    liver cancer
    Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

    hepatocellular cholangiocarcinoma
    My wife also has lesions in both lobes, but after visiting MD ANderson for a 2nd opinion she was told that she was not a candidate for any treatment other than Nexavar. She does not wish to go thru the anguish just to add a few months to her life. How did your doctor come to the conclusion that RFA would be successfull?
    we are pursuing alternative homeopathy, but are unsure of where to start.
  • kknearem
    kknearem Member Posts: 2
    #34
    cnatekar said:

    Here is My Fathers Story
    My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

    Chetan

    alternative therapy
    Can you tell me what remedies with he is taking - and how he is doing. My wife hes been diagnosed with Hepatocellular/Cholangiocarcoma, and has been told that Nexavar is her only solution - and that is not a cure. Traditional medicine is without answers, so we wish to go with alternative/homeopathic therapies. Of course, we ant to know what has worked for other folks.
  • GrayLady
    GrayLady Member Posts: 1
    #35
    Nexavar

    My husband had cirrhosis of the liver and developed nodes which turned cancerous.  They started him on Nexavar, but he broke out in terrible hives.  We agreed that this would not be a drug of choice.  He has since passed away lasat June 25, 2012.  He was on the liver transplant list at Richmond MCV with Dr. Fisher, the top surgeon.  He missed the window and was told sorry.  Dr. Fisher said, "I told you at the beginning only 30% of all people get transplants that it is a matter of luck and timing.  We missed the window.  He put us in Hospice and my precious husband made it 3 more weeks.  He had acites that were terrible and had to be drained weekly.  We chose to go to Lynchburg.  I loved them.  Radiology oversaw this and they were so easy to get to from Farmville.  I have only been able to write or talk about any of this just this month.  My husband and I had been high school sweethearts and 44 years of marriage. My heart goes out to all of you that are having to follow this path.  GrayLady

  • nanajacksonx3
    nanajacksonx3 Member Posts: 8
    #36
    cnatekar said:

    Here is My Fathers Story
    My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

    Chetan

    update on your father

    hoping your father continues doing well. Would like an update if possible. Dont know why but on these discussion boards, with the exception of some, most ppl only post for a brief period. updates would be helpful.

  • nanajacksonx3
    nanajacksonx3 Member Posts: 8
    #37
    GrayLady said:

    Nexavar

    My husband had cirrhosis of the liver and developed nodes which turned cancerous.  They started him on Nexavar, but he broke out in terrible hives.  We agreed that this would not be a drug of choice.  He has since passed away lasat June 25, 2012.  He was on the liver transplant list at Richmond MCV with Dr. Fisher, the top surgeon.  He missed the window and was told sorry.  Dr. Fisher said, "I told you at the beginning only 30% of all people get transplants that it is a matter of luck and timing.  We missed the window.  He put us in Hospice and my precious husband made it 3 more weeks.  He had acites that were terrible and had to be drained weekly.  We chose to go to Lynchburg.  I loved them.  Radiology oversaw this and they were so easy to get to from Farmville.  I have only been able to write or talk about any of this just this month.  My husband and I had been high school sweethearts and 44 years of marriage. My heart goes out to all of you that are having to follow this path.  GrayLady

    thank you!

    As difficult as it is, you have shared your husband's story. That is progress and i thank you. god bless you Gray Lady! Joy

  • NatashaAttal
    NatashaAttal Member Posts: 1
    #38
    GrayLady said:

    Nexavar

    My husband had cirrhosis of the liver and developed nodes which turned cancerous.  They started him on Nexavar, but he broke out in terrible hives.  We agreed that this would not be a drug of choice.  He has since passed away lasat June 25, 2012.  He was on the liver transplant list at Richmond MCV with Dr. Fisher, the top surgeon.  He missed the window and was told sorry.  Dr. Fisher said, "I told you at the beginning only 30% of all people get transplants that it is a matter of luck and timing.  We missed the window.  He put us in Hospice and my precious husband made it 3 more weeks.  He had acites that were terrible and had to be drained weekly.  We chose to go to Lynchburg.  I loved them.  Radiology oversaw this and they were so easy to get to from Farmville.  I have only been able to write or talk about any of this just this month.  My husband and I had been high school sweethearts and 44 years of marriage. My heart goes out to all of you that are having to follow this path.  GrayLady

    Would love advice

    Hi GrayLady,

     

    I'm so sorry to hear about your loss but happy that you are reaching out and offering kind words and support to others in this forum. I'm sure so many are very thankful for that!

    My stepfather has been diagnosed with Stage 4 liver cancer and he also has a large tumor in his colon. He was given 3-6 months to live by his doctor which was 5 months ago. In that short time he has lost 50+ lbs and has no more appetite and lots of pain. I am heartbroken about potentially losing my stepfather as he has been in my life since I was 4 years old. I am also extremely worried about my mother. I'd love some advice from you on how to keep going after your loved one passes. I would like to be a source of support for my mom as much as possible and I'd love advice from someone like you who has been through it.

     

    Thank you so much in advance for your words of wisdom. 

     

    Best,

    Natasha

  • cathyhd
    cathyhd Member Posts: 8
    #39
    NatashaAttal said:

    Would love advice

    Hi GrayLady,

     

    I'm so sorry to hear about your loss but happy that you are reaching out and offering kind words and support to others in this forum. I'm sure so many are very thankful for that!

    My stepfather has been diagnosed with Stage 4 liver cancer and he also has a large tumor in his colon. He was given 3-6 months to live by his doctor which was 5 months ago. In that short time he has lost 50+ lbs and has no more appetite and lots of pain. I am heartbroken about potentially losing my stepfather as he has been in my life since I was 4 years old. I am also extremely worried about my mother. I'd love some advice from you on how to keep going after your loved one passes. I would like to be a source of support for my mom as much as possible and I'd love advice from someone like you who has been through it.

     

    Thank you so much in advance for your words of wisdom. 

     

    Best,

    Natasha

    Cholangiocarcinoma - Surviving

    I haven't been on this website for a long time.  Most of the time, I see that posts are 1-2 years old so I can't help much.  I can say that I have survived for 4.5 years so far in great condition.  I did catch it before it metasticized beyond the liver, but I have had a lymph node reoccurrence now and then.  

     

    If anyone would like to see my detailed treatments and lessons learned, please see my info.  If you have questions, please contact me.  I don't know about some of the treatments that people have had to have due to bile duct blockage or tumors all over the liver, but I did have a very big tumor (though it was found to be less in surgery).  My location is near Dallas.  I have had experience with Methodist Dallas and MD Anderson (surgeon and radiologist).  I have not had experiene with an oncologist in either hospital.  Really like my local oncologist who was trained iat Chicago's best.

     

    I am married now.  I had been the widow of a wonderful man who died from Mesothelioma for being around asbestos a short while in his young life.  He died at 54, 5 months after diagnosis.  I have had experience in being a caregiver of someone who knew beyond a doubt that there was no cure, no treatment, that could help him survive or extend his life much at all.  Talk about an emotional blow.  I did some awesome things, and I also have regrets and know now what would have been better for both of us.  We hit Memorial Sloan Kettering and MD Anderson.  Our experience at S-K was awful -- awful.  But I know some people have lived because of them.  

     

     

  • Annie_A
    Annie_A Member Posts: 3
    #40
    cathyhd said:

    Cholangiocarcinoma - Surviving

    I haven't been on this website for a long time.  Most of the time, I see that posts are 1-2 years old so I can't help much.  I can say that I have survived for 4.5 years so far in great condition.  I did catch it before it metasticized beyond the liver, but I have had a lymph node reoccurrence now and then.  

     

    If anyone would like to see my detailed treatments and lessons learned, please see my info.  If you have questions, please contact me.  I don't know about some of the treatments that people have had to have due to bile duct blockage or tumors all over the liver, but I did have a very big tumor (though it was found to be less in surgery).  My location is near Dallas.  I have had experience with Methodist Dallas and MD Anderson (surgeon and radiologist).  I have not had experiene with an oncologist in either hospital.  Really like my local oncologist who was trained iat Chicago's best.

     

    I am married now.  I had been the widow of a wonderful man who died from Mesothelioma for being around asbestos a short while in his young life.  He died at 54, 5 months after diagnosis.  I have had experience in being a caregiver of someone who knew beyond a doubt that there was no cure, no treatment, that could help him survive or extend his life much at all.  Talk about an emotional blow.  I did some awesome things, and I also have regrets and know now what would have been better for both of us.  We hit Memorial Sloan Kettering and MD Anderson.  Our experience at S-K was awful -- awful.  But I know some people have lived because of them.  

     

     

    This is a huge inspiration. 

    This is a huge inspiration Cathyhd.  My husband has been battling HCC since November of 2012 and when I read these discussion boards, I see people stop posting and I wonder if they passed, got better, got busy, etc. 

    My husband is receiving treatment at Northwestern in Chicago.  He has had a resection with recurrence only 3 months after.  He has had 3 rounds of Y-90 and is now on his 3rd month of Sorafenib.  There are no new lesions and the lesions that were once in the liver are no longer visible.  He does have 2 lymph nodes that are enlarged; causing the team to be suspicious of recurrence to the lypmh nodes which is why the Sorafenib.  Sorafenib is really wearing him down though and I do not know how much longer he will be able to continue.  He has lost 30 pounds, his diabetes is uncontrolled, severe fatigue, shortness of breath, etc. 

    In November 2013, I was cleared as his live donor for transplant but we are now playing the waiting game to see what is going to happen with these lymph nodes.  Up until we were treated by medical oncology, I loved the team at Northwestern, however, I am not happy with the choices of oncologists - we are on our 2nd one and I feel like my husband is being brushed off into the corner until he fades away.

    I am considering taking him to another center and MD Anderson would be one of my choices.  We were at Mayo for a second opinion last fall (prior to Y-90 treatment) and I did like they doctor we saw there as well but he is not an oncologist.  UCSF has also been recommended.

    I am desperately seeking information on how your LN recurrence was diagnosed and how it was treated.  Please message me when you get a chance.

     

  • kohsin
    kohsin Member Posts: 29 Member
    #41
    Annie_A said:

    This is a huge inspiration. 

    This is a huge inspiration Cathyhd.  My husband has been battling HCC since November of 2012 and when I read these discussion boards, I see people stop posting and I wonder if they passed, got better, got busy, etc. 

    My husband is receiving treatment at Northwestern in Chicago.  He has had a resection with recurrence only 3 months after.  He has had 3 rounds of Y-90 and is now on his 3rd month of Sorafenib.  There are no new lesions and the lesions that were once in the liver are no longer visible.  He does have 2 lymph nodes that are enlarged; causing the team to be suspicious of recurrence to the lypmh nodes which is why the Sorafenib.  Sorafenib is really wearing him down though and I do not know how much longer he will be able to continue.  He has lost 30 pounds, his diabetes is uncontrolled, severe fatigue, shortness of breath, etc. 

    In November 2013, I was cleared as his live donor for transplant but we are now playing the waiting game to see what is going to happen with these lymph nodes.  Up until we were treated by medical oncology, I loved the team at Northwestern, however, I am not happy with the choices of oncologists - we are on our 2nd one and I feel like my husband is being brushed off into the corner until he fades away.

    I am considering taking him to another center and MD Anderson would be one of my choices.  We were at Mayo for a second opinion last fall (prior to Y-90 treatment) and I did like they doctor we saw there as well but he is not an oncologist.  UCSF has also been recommended.

    I am desperately seeking information on how your LN recurrence was diagnosed and how it was treated.  Please message me when you get a chance.

     

    Hi Annie_A

    Try UIC medical Center. Dr. Jeung or Bui's dept. I have survived since 2010, after 2 treatment of Y90 and surgery removing my 9 CM tumor, I am into my 5th year w/o issues. Sounds like your husband's condition is unoperable. At least I think they treat me well.

    Good luck!

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