Tumors bacl after resection :(

SarahD
SarahD Member Posts: 139
edited March 2014 in Liver Cancer #1
My dad's HCC has reccured just after 3 months. Its back with vengance, multiple tumors all over teh liver. His oncologist says he should try a clinical trial that combines sorafenib and another chemo drug in combination. This is so devestating I cant stop crying my eyes out! I dont want this to be happening, I dont want him to die! I am going to take him to the cancer treatment center of america in philidelphia for another opinion.
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Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Hello Sarah
    I replied to
    Hello Sarah
    I replied to your other post. A second opinion is an excellent idea! Keep your chins up and your hearts open!
    Tina
  • SarahD
    SarahD Member Posts: 139
    #3
    Tina Blondek said:

    Hello Sarah
    I replied to
    Hello Sarah
    I replied to your other post. A second opinion is an excellent idea! Keep your chins up and your hearts open!
    Tina

    thank you it just scares me
    thank you it just scares me so much to see how aggressive it is...multiple tumors all over his liver in only 3 months from his resection, surgery was his only chance for a cure and now its back so sooooo aggressive, does this mean its going to kill him? He had plans to go back to syria for a visit to see his parents and family he put it off one already because of his illness, he is leaving tommorow and cutting his trip short to 3-4 weeks. When he reutrns We are going to the CTCA in philidelphia, im not settling for a clinical trial, does that mean they lost hope?
  • stage4liver
    stage4liver Member Posts: 46
    #4
    SarahD said:

    thank you it just scares me
    thank you it just scares me so much to see how aggressive it is...multiple tumors all over his liver in only 3 months from his resection, surgery was his only chance for a cure and now its back so sooooo aggressive, does this mean its going to kill him? He had plans to go back to syria for a visit to see his parents and family he put it off one already because of his illness, he is leaving tommorow and cutting his trip short to 3-4 weeks. When he reutrns We are going to the CTCA in philidelphia, im not settling for a clinical trial, does that mean they lost hope?

    Hi Sarah,
    Sorry to hear that
    Hi Sarah,

    Sorry to hear that they came right back. I had a resection as well and they came right back , 5 in my liver, on my adrenal and in my lung. I then entered a clinical trial and had a TACEdb procedure done (similar to the radioembo but with chemo) all liver tumors gone will see if they are back again as I go for my 3 month scans in a couple weeks. If you don't have an interventional radiologist involved in your fathers care program....get one!!! It not the end just because of a recurrence only God knows our final day.

    Be careful with CTCA which I highly doubt has much specialization in primary liver cancer. I've heard very mixed reviews of those places, definitely talk with you insurance provider as i've heard of people being told they were covered by ctca and sure they were but only for about 50% of the costs. Being close to Philly I would recommend going to Sloan Kettering in NY before a CTCA. I go to Sloan and I live in Wisconsin. Great doctors and many that specialize in HCC - primary liver cancer. I can send you names if you like?
  • stage4liver
    stage4liver Member Posts: 46
    #5
    stage4liver said:

    Hi Sarah,
    Sorry to hear that
    Hi Sarah,

    Sorry to hear that they came right back. I had a resection as well and they came right back , 5 in my liver, on my adrenal and in my lung. I then entered a clinical trial and had a TACEdb procedure done (similar to the radioembo but with chemo) all liver tumors gone will see if they are back again as I go for my 3 month scans in a couple weeks. If you don't have an interventional radiologist involved in your fathers care program....get one!!! It not the end just because of a recurrence only God knows our final day.

    Be careful with CTCA which I highly doubt has much specialization in primary liver cancer. I've heard very mixed reviews of those places, definitely talk with you insurance provider as i've heard of people being told they were covered by ctca and sure they were but only for about 50% of the costs. Being close to Philly I would recommend going to Sloan Kettering in NY before a CTCA. I go to Sloan and I live in Wisconsin. Great doctors and many that specialize in HCC - primary liver cancer. I can send you names if you like?

    Forgot to mention...clinical
    Forgot to mention...clinical trials does NOT mean they lost hope! Unfortunately there just aren't alot of treatment options for liver cancer, thus the need for more trials and research to be conducted.

    Good luck and God bless!
  • slg
    slg Member Posts: 200
    #6
    SarahD said:

    thank you it just scares me
    thank you it just scares me so much to see how aggressive it is...multiple tumors all over his liver in only 3 months from his resection, surgery was his only chance for a cure and now its back so sooooo aggressive, does this mean its going to kill him? He had plans to go back to syria for a visit to see his parents and family he put it off one already because of his illness, he is leaving tommorow and cutting his trip short to 3-4 weeks. When he reutrns We are going to the CTCA in philidelphia, im not settling for a clinical trial, does that mean they lost hope?

    HCC
    SarahD,
    I agree with Stage4 regarding the Interventional Radiologist. My husband had a TACE procedure in January and again in March and is also on Sorafenib. So far good results. He had his last CT scan in June and will do again in Oct. The tumors were either shrunk or they could not see any No new ones! We have had other issues but so far so good. Keep the hope!
    SLG
  • SarahD
    SarahD Member Posts: 139
    #7
    slg said:

    HCC
    SarahD,
    I agree with Stage4 regarding the Interventional Radiologist. My husband had a TACE procedure in January and again in March and is also on Sorafenib. So far good results. He had his last CT scan in June and will do again in Oct. The tumors were either shrunk or they could not see any No new ones! We have had other issues but so far so good. Keep the hope!
    SLG

    Stage 4 now i am confused
    Stage 4 now i am confused and nervous....what should we do we are supposed to go to the ctca when he get back from hs trip....we already talked to someone there what should I do, we havent seen an interventional radiologist since before my dads surgery for his embolization since then just surgery. how often do you have to fly to sloan from wisconson? what would you reccomend them over the ctca? I just dont get it they said clean margins its all BS.
  • SarahD
    SarahD Member Posts: 139
    #8
    SarahD said:

    Stage 4 now i am confused
    Stage 4 now i am confused and nervous....what should we do we are supposed to go to the ctca when he get back from hs trip....we already talked to someone there what should I do, we havent seen an interventional radiologist since before my dads surgery for his embolization since then just surgery. how often do you have to fly to sloan from wisconson? what would you reccomend them over the ctca? I just dont get it they said clean margins its all BS.

    I woiuld love to take some
    I woiuld love to take some names from sloan do you think they are booking way ahead.....should we even leave boston...my dads oncologis there said only a clinical trial right now.....did you do a trial and tacedb right at the same time or were they spaced out. One thing i liked about the CTCA is that they are holistic and treat the person as whole not juts their cancer and i think that is very important. Im so confused and stressed i hate this i really thought his first scan would be clear....obviousley its just that aggessive is he going to die because its back so bad? im sorry so many questions its juts terrible we had a sense of control before....surgery, tumor out, follow with scans easy plan right? Now we all feel uncertain again!
  • emirl
    emirl Member Posts: 6
    #9
    Know how you feel
    I know how you feel. My father's cancer (which was caught as early as you can get - they were monitoring his AFPs in preparation of it arriving) returned recently. He was resected once successfully and within about 3 months the cancer came back extremely agressively.
    Doctors say there's only one other documented case like Dad's, I've read it and while HCC is never good I'm hopeful chemo might do something in this highly unusual case.

    Makes me wonder if the cancer would have reacted had we just left it alone and not done the initial operation.
  • SarahD
    SarahD Member Posts: 139
    #10
    emirl said:

    Know how you feel
    I know how you feel. My father's cancer (which was caught as early as you can get - they were monitoring his AFPs in preparation of it arriving) returned recently. He was resected once successfully and within about 3 months the cancer came back extremely agressively.
    Doctors say there's only one other documented case like Dad's, I've read it and while HCC is never good I'm hopeful chemo might do something in this highly unusual case.

    Makes me wonder if the cancer would have reacted had we just left it alone and not done the initial operation.

    How old is your dad? What is
    How old is your dad? What is his general health like? Im so devistated What are his options now?
  • stage4liver
    stage4liver Member Posts: 46
    #11
    SarahD said:

    How old is your dad? What is
    How old is your dad? What is his general health like? Im so devistated What are his options now?

    Hi Sarah,
    I didnt mean to
    Hi Sarah,

    I didnt mean to scare you about the CTCA's. If you've done your homework and feel comfortable and confident in their staff by all means follow through with them. There are quite a few very good cancer centers in the North-East, Sloan, John Hopkins, etc. I dont know where you are going in Boston but maybe see about talking with an interventional radiologist there and see if he/she can review your dad's scans to look for other treatment options. I also dont know if your father has any underlying issues preventing other treatment options such as cirhossis, diabeties, hepa, etc...I'm 41 with none of the above. Here's a link to the 2010 top cancer hospitals in the US.
    http://health.usnews.com/best-hospitals/rankings/cancer

    Keep in mind most of the top rated cancer centers offer more than just conventional medicine. I also see someone in integrative medicine for; diet, supplements, herbs, etc. I also know they have other programs for support groups, group therapies, painting, etc...I dont take advantage of those due to my proximity to the hospital. I'm sure I could also find local programs here such as Gilda's Clubs and such if I really wanted to pursue further.

    Initially I was flying to Sloan what seemed like every other week and sometimes in and out the same day as its only a 2 hour direct flight for me. My brother lives up that way as well so it helped when I needed extra recovery time or when my family came along so we didnt have to always drop 300+ a night for a hotel in Manhattan.

    Here's who I see at MSK all of which I hand picked from their bio page on the MSK website and couldnt be happier with my selections. I had my resection locally in WI and transferred care to Sloan after that.
    http://www.mskcc.org/mskcc/html/17665.cfm

    Dr. Peter Allen - Surgery / Primary Dr.
    Dr. Constantinos Sofocleous - Interventional Radiologist
    Dr. Ghassan Abou-Alfa - Oncology
    Donald Garrity - RD/CDN Integrative Medicine
    I've had the most dealings with Dr. Sofocleous and his team for the clinical trial. He's great and tells me answers straight up. Actually they have all been; compassionate, straight forward and treated me as a person not as a file or case number. I havent met with Dr. Abou-Alfa yet but am scheduled to meet with him on my next visit. I'm pretty sure he's going to put me on Nexavar so dont know my thoughts on that yet...haha

    The clinical trial I'm in is comparing TAE (bland embolization which is MSK's gold standard now) vs. TACEdb (chemoembolization with dox enbedded drug eluting beads). I've read a European study on the TACEdb and it looks very promising for being the best choice of the three; TAE, TACE & TACEdb. Not all clinical trials are of experimental drugs as one might think but some are proving one method provideds better treatment benefits over another or the use of a combination of currently available drugs and procedures to see if that adds benefit. Do your homework on trials, find out what the end point is, phase of trial, purpose of the trial and make sure they're in your fathers best interest before joining one.

    You're right primary liver cancer is a very aggressive cancer. I'm sure your father will be around for your wedding in a couple months. I hope your father enjoys his visit with his parents and God bless!
  • SarahD
    SarahD Member Posts: 139
    #12
    stage4liver said:

    Hi Sarah,
    I didnt mean to
    Hi Sarah,

    I didnt mean to scare you about the CTCA's. If you've done your homework and feel comfortable and confident in their staff by all means follow through with them. There are quite a few very good cancer centers in the North-East, Sloan, John Hopkins, etc. I dont know where you are going in Boston but maybe see about talking with an interventional radiologist there and see if he/she can review your dad's scans to look for other treatment options. I also dont know if your father has any underlying issues preventing other treatment options such as cirhossis, diabeties, hepa, etc...I'm 41 with none of the above. Here's a link to the 2010 top cancer hospitals in the US.
    http://health.usnews.com/best-hospitals/rankings/cancer

    Keep in mind most of the top rated cancer centers offer more than just conventional medicine. I also see someone in integrative medicine for; diet, supplements, herbs, etc. I also know they have other programs for support groups, group therapies, painting, etc...I dont take advantage of those due to my proximity to the hospital. I'm sure I could also find local programs here such as Gilda's Clubs and such if I really wanted to pursue further.

    Initially I was flying to Sloan what seemed like every other week and sometimes in and out the same day as its only a 2 hour direct flight for me. My brother lives up that way as well so it helped when I needed extra recovery time or when my family came along so we didnt have to always drop 300+ a night for a hotel in Manhattan.

    Here's who I see at MSK all of which I hand picked from their bio page on the MSK website and couldnt be happier with my selections. I had my resection locally in WI and transferred care to Sloan after that.
    http://www.mskcc.org/mskcc/html/17665.cfm

    Dr. Peter Allen - Surgery / Primary Dr.
    Dr. Constantinos Sofocleous - Interventional Radiologist
    Dr. Ghassan Abou-Alfa - Oncology
    Donald Garrity - RD/CDN Integrative Medicine
    I've had the most dealings with Dr. Sofocleous and his team for the clinical trial. He's great and tells me answers straight up. Actually they have all been; compassionate, straight forward and treated me as a person not as a file or case number. I havent met with Dr. Abou-Alfa yet but am scheduled to meet with him on my next visit. I'm pretty sure he's going to put me on Nexavar so dont know my thoughts on that yet...haha

    The clinical trial I'm in is comparing TAE (bland embolization which is MSK's gold standard now) vs. TACEdb (chemoembolization with dox enbedded drug eluting beads). I've read a European study on the TACEdb and it looks very promising for being the best choice of the three; TAE, TACE & TACEdb. Not all clinical trials are of experimental drugs as one might think but some are proving one method provideds better treatment benefits over another or the use of a combination of currently available drugs and procedures to see if that adds benefit. Do your homework on trials, find out what the end point is, phase of trial, purpose of the trial and make sure they're in your fathers best interest before joining one.

    You're right primary liver cancer is a very aggressive cancer. I'm sure your father will be around for your wedding in a couple months. I hope your father enjoys his visit with his parents and God bless!

    have you been given a
    have you been given a prognosis yet? are you on any chemo drugs? you have mets wouldnt they want you to have chemo in your system to prevent any more cells from circulating elsewhere? i dont know why i feel like the end is here! i just dint know anymore!
  • SarahD
    SarahD Member Posts: 139
    #13
    SarahD said:

    have you been given a
    have you been given a prognosis yet? are you on any chemo drugs? you have mets wouldnt they want you to have chemo in your system to prevent any more cells from circulating elsewhere? i dont know why i feel like the end is here! i just dint know anymore!

    SLG
    SLG whats is your husbands condition? does he have cirrhosis did he have a resection? when was he diagnosed?? sorry about all the questions! what stage is he what was the course of his treatment?
  • stage4liver
    stage4liver Member Posts: 46
    #14
    SarahD said:

    have you been given a
    have you been given a prognosis yet? are you on any chemo drugs? you have mets wouldnt they want you to have chemo in your system to prevent any more cells from circulating elsewhere? i dont know why i feel like the end is here! i just dint know anymore!

    My prognosis after resection
    My prognosis after resection was "about a year" which I won't accept and that was 6 months ago so guess half my times up! I think whenever it gets to the liver either primary or from mets they give a pretty dismal prognosis. Sloan said they didn't have a crystal ball and couldn't tell me how long I have left. There's only one person that knows when my last day will be and it's not a Doctor.

    Traditional whole body Chemo typically doesnt work on primary liver cancer so it isn't usually worked into one's treatment protocol. I guess that can be good and bad. There just aren't a lot of treatment options when it comes to HCC. I've also worked diet & lifestyle changes into my program to try and help my chances.

    Sloan Kettering wrote a book I think called 100 things you want to know about liver cancer, try looking it up on amazon. My parents have it now so will hav to get the exact title if you can't find it. It's also a good read along with AntiCancer.
  • emirl
    emirl Member Posts: 6
    #15
    SarahD said:

    How old is your dad? What is
    How old is your dad? What is his general health like? Im so devistated What are his options now?

    Dad is 75, up until this
    Dad is 75, up until this operation his health was great- walking 3-4 miles a day. Now, after this second resection he can barely walk a corridor unaided. It's not the cancer that did this, it's the operation which has knocked him about hugely. His form of HCC is extreme,ly rare (8 cases in the last 35 years) sso we hope he'll respond to chemo. Who knows, I have to say though that I feel cheated by this operation, it has aged him 10 years, the cancer was never more than ghosts on an MRI - the operation is what has really taken the toll.
  • SarahD
    SarahD Member Posts: 139
    #16
    emirl said:

    Dad is 75, up until this
    Dad is 75, up until this operation his health was great- walking 3-4 miles a day. Now, after this second resection he can barely walk a corridor unaided. It's not the cancer that did this, it's the operation which has knocked him about hugely. His form of HCC is extreme,ly rare (8 cases in the last 35 years) sso we hope he'll respond to chemo. Who knows, I have to say though that I feel cheated by this operation, it has aged him 10 years, the cancer was never more than ghosts on an MRI - the operation is what has really taken the toll.

    im sorry to hear that emirl
    im sorry to hear that emirl is it aggressive? 2 surgerys is alot to go through he must have been is good health to have to liver resections at age 75! best of luck to you.
  • SarahD
    SarahD Member Posts: 139
    #17
    SarahD said:

    im sorry to hear that emirl
    im sorry to hear that emirl is it aggressive? 2 surgerys is alot to go through he must have been is good health to have to liver resections at age 75! best of luck to you.

    stage4
    Hi mike, how do you know which clinical trial is the best one? I just want to make sure we are doing the best most agressive promising one for him i dont want to waste any time! You have mets already, are you on any systemic chemo drugs yet to prevent further mets? Did they consider your cancer to be aggressive? what should we do? so far no mets...yet just intrahepatic mets all over liver
  • SarahD
    SarahD Member Posts: 139
    #18
    SarahD said:

    im sorry to hear that emirl
    im sorry to hear that emirl is it aggressive? 2 surgerys is alot to go through he must have been is good health to have to liver resections at age 75! best of luck to you.

    stage4
    Hi mike, how do you know which clinical trial is the best one? I just want to make sure we are doing the best most agressive promising one for him i dont want to waste any time! You have mets already, are you on any systemic chemo drugs yet to prevent further mets? Did they consider your cancer to be aggressive? what should we do? so far no mets...yet just intrahepatic mets all over liver
  • NumOneMom4
    NumOneMom4 Member Posts: 6
    #19
    HCC
    Sorry to hear about your dad. HCC is a very aggressive and devasting cancer. My husbands HCC was confirmed in January when he had an RFA treatment and they did a biopsy. At that time, he had one 3 cm tumor in the right lobe. They treated that one with RFA in Jan. and when we went back six weeks later for his MRI, he had multiple tumors involving both lobes.
    They gave him a theraspheres treatment in May for the right lobe, as it contained the most tumors. He was scheduled to have another treatment for the one tumor in the left lobe on Aug. 4, but he went into liver failure before they could do the treatment. He passed away on August 30 at home. I hope you have better luck with your dad. It is a very painful thing to watch someone you love suffer so. I take comfort in knowing that he is no longer suffering.
  • Mako181
    Mako181 Member Posts: 13
    #20
    SarahD said:

    stage4
    Hi mike, how do you know which clinical trial is the best one? I just want to make sure we are doing the best most agressive promising one for him i dont want to waste any time! You have mets already, are you on any systemic chemo drugs yet to prevent further mets? Did they consider your cancer to be aggressive? what should we do? so far no mets...yet just intrahepatic mets all over liver

    Liver Cancer
    Sarah,

    There is HOPE!!! We have fought the battle of terminal liver cancer since my husband was diagnosed in June 2008. He is doing fine and in July of this year was determined to be cancer free. We combined nutrition with Nexavar and are thrilled with his results. You can read our journey at www.don-n-lynette.blogspot.com. I can feel your anxiety through your words and wanted to offer you some hope.
  • Trischa
    Trischa Member Posts: 1
    #21
    Mako181 said:

    Liver Cancer
    Sarah,

    There is HOPE!!! We have fought the battle of terminal liver cancer since my husband was diagnosed in June 2008. He is doing fine and in July of this year was determined to be cancer free. We combined nutrition with Nexavar and are thrilled with his results. You can read our journey at www.don-n-lynette.blogspot.com. I can feel your anxiety through your words and wanted to offer you some hope.

    I'm so uplifted by your
    I'm so uplifted by your story...my husband was just diagnosed with the same thing and is starting Nexavar tonight....I am praying that like your husband he responds well and can shrink his tumors or even get rid of them all together....thanks for the post, my faith is revived!!!

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