Stage 4 HCC - my introduction

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  • SarahD
    SarahD Member Posts: 139

    On the CTCA I've heard mixed
    On the CTCA I've heard mixed reviews from people that met with them also possible problems with insurance. I was planning to go in for a consult as there is one about an hour from me but opted to go to Sloan instead for now. When you have HCC or any cancer for that matter I leave all options open! haha

    How is everything going with
    How is everything going with you mike? Any new treatment plans? My dad has been in and out of the hospital 3 times since his discharge home from the surgery. Its all due to comlications of the sugery, the fluid build then the drain was placed, and since then its been problems with the drain! I tell him if this is what it takes to be cancer free then its pretty damn good! :) Hope you are well
  • stage4liver
    stage4liver Member Posts: 46
    SarahD said:

    How is everything going with
    How is everything going with you mike? Any new treatment plans? My dad has been in and out of the hospital 3 times since his discharge home from the surgery. Its all due to comlications of the sugery, the fluid build then the drain was placed, and since then its been problems with the drain! I tell him if this is what it takes to be cancer free then its pretty damn good! :) Hope you are well

    Hi Sarah,
    Sorry to hear

    Hi Sarah,

    Sorry to hear your dad is having problems. I havent had any problems related to my resection surgery, knock on wood, and that was about 2 months ago now. I went in a couple weeks ago to try the embolization and that they couldnt finish due to something called disection, a rare 5% chance comlpication, I think the hapatic artery started to tear or split so they stopped for safety reasons? I fly back up Monday to try it again so hopefully no complications this time and all goes well.

    Prayers to your father!!
  • jim2204
    jim2204 Member Posts: 13

    Hi Sarah,
    Sorry to hear

    Hi Sarah,

    Sorry to hear your dad is having problems. I havent had any problems related to my resection surgery, knock on wood, and that was about 2 months ago now. I went in a couple weeks ago to try the embolization and that they couldnt finish due to something called disection, a rare 5% chance comlpication, I think the hapatic artery started to tear or split so they stopped for safety reasons? I fly back up Monday to try it again so hopefully no complications this time and all goes well.

    Prayers to your father!!

    Sarah, sorry to hear about
    Sarah, sorry to hear about your dad's post surgery problem. How's your dad's pathology report? Mine showed extensive vessel invasion and I think that's the reason my cancer came bad after the 12/09 resection surgery.
    Stage4liver, thanks for the courage and positive attitude. I will remember you both in my prayer.
  • SarahD
    SarahD Member Posts: 139
    jim2204 said:

    Sarah, sorry to hear about
    Sarah, sorry to hear about your dad's post surgery problem. How's your dad's pathology report? Mine showed extensive vessel invasion and I think that's the reason my cancer came bad after the 12/09 resection surgery.
    Stage4liver, thanks for the courage and positive attitude. I will remember you both in my prayer.

    We have missed both follow
    We have missed both follow up apointments with the surgeon beause of my dads readmission to the hospital so im not sure what the path report shows. I have to bleieve we are stronger than this and we can all beat it! (Im speaking for my dad also!)
  • stage4liver
    stage4liver Member Posts: 46
    SarahD said:

    We have missed both follow
    We have missed both follow up apointments with the surgeon beause of my dads readmission to the hospital so im not sure what the path report shows. I have to bleieve we are stronger than this and we can all beat it! (Im speaking for my dad also!)

    Just a little update
    Just a little update here...

    I went in last Tuesday morning for my 2nd attempt at the TACEdeb clinical trial i'm in. I was just released yesterday after one heck of a hell week in recovery...I went through almost all the post embo syndroms but couldnt be happier. They managed to not only wipe out all the visible liver tumors I had but also a good portion of my liver haha. I didnt have all small spots either we're talking 5-6 tumors ranging from 2.5cm-5.25cm all gone!! I'm pretty confident these results are not typical for a Tace or any other embolization process but you have to keep persistent. Also still not done in this battle but enjoying a lilttle victory right now. I'm trying to not get too excited as I know recurrence is very high in HCC. Thanks MSK!!
  • kohsin
    kohsin Member Posts: 29 Member

    Just a little update
    Just a little update here...

    I went in last Tuesday morning for my 2nd attempt at the TACEdeb clinical trial i'm in. I was just released yesterday after one heck of a hell week in recovery...I went through almost all the post embo syndroms but couldnt be happier. They managed to not only wipe out all the visible liver tumors I had but also a good portion of my liver haha. I didnt have all small spots either we're talking 5-6 tumors ranging from 2.5cm-5.25cm all gone!! I'm pretty confident these results are not typical for a Tace or any other embolization process but you have to keep persistent. Also still not done in this battle but enjoying a lilttle victory right now. I'm trying to not get too excited as I know recurrence is very high in HCC. Thanks MSK!!

    Good to hear
    THE GOOD NEWS!!! KEEP IT UP!!
  • westie66
    westie66 Member Posts: 642

    Just a little update
    Just a little update here...

    I went in last Tuesday morning for my 2nd attempt at the TACEdeb clinical trial i'm in. I was just released yesterday after one heck of a hell week in recovery...I went through almost all the post embo syndroms but couldnt be happier. They managed to not only wipe out all the visible liver tumors I had but also a good portion of my liver haha. I didnt have all small spots either we're talking 5-6 tumors ranging from 2.5cm-5.25cm all gone!! I'm pretty confident these results are not typical for a Tace or any other embolization process but you have to keep persistent. Also still not done in this battle but enjoying a lilttle victory right now. I'm trying to not get too excited as I know recurrence is very high in HCC. Thanks MSK!!

    Wonderful news!
    Hi: Wow, that is good news -you're licking it! I have a question about the embolization process. Is this the same as TheraSphere (I think I have the right spelling)? If it is, it was developed at the London Regional Cancer Centre here in Ontario where I am currently seeing an oncologist for primary gallbladder cancer (gallbladder and its tumour removed) that has spread to the liver. I did ask my oncologist about TheraSpheres which is when he told me that it had been developed there but the government didn't want to fund it and so it went to the USA. Not sure if anyone does this in Canada??? I am awaiting treatment of some sort but can't do anything until the surgery incisions heal. Anyways, if you could let me know? Thanks!
    Cheryl
  • stage4liver
    stage4liver Member Posts: 46
    westie66 said:

    Wonderful news!
    Hi: Wow, that is good news -you're licking it! I have a question about the embolization process. Is this the same as TheraSphere (I think I have the right spelling)? If it is, it was developed at the London Regional Cancer Centre here in Ontario where I am currently seeing an oncologist for primary gallbladder cancer (gallbladder and its tumour removed) that has spread to the liver. I did ask my oncologist about TheraSpheres which is when he told me that it had been developed there but the government didn't want to fund it and so it went to the USA. Not sure if anyone does this in Canada??? I am awaiting treatment of some sort but can't do anything until the surgery incisions heal. Anyways, if you could let me know? Thanks!
    Cheryl

    Hi Cheryl,
    The procedures

    Hi Cheryl,

    The procedures in practice are pretty much identical, someone correct me if I’m wrong. However with the process you describe the Therasphere is typically a glass bead with y-90 radioactive material that is then embolized into the tumors..main difference Radiation not Chemo. Both processes are performed through the hepatic artery in the groin where the feed a catheter up into the liver performing an angiograph then follow that procedure with the embolization.

    The process I had done can be performed a few different ways.
    TAE - Bead block only no radiation or chemo introduced
    TACE - Bead block mixed into a slurry of chemotherapeutic drugs
    TACEdeb - This is the one I had where the chemo agent Doxorubicin is imbedded into the drug eluting beads and then slow released for longer dwell time and higher sustained concentrations to the tumors.

    The clinical trial I'm in at Sloan is comparing the TAE vs the TACEdeb. Currently TAE is their gold standard for this process.

    Ask your oncologist or interventional radiologist where you can get these products in Canada? Best wishes and prayers on your journey, keep your head held high and say F@*k Cancer to start your day!
  • slg
    slg Member Posts: 200

    Just a little update
    Just a little update here...

    I went in last Tuesday morning for my 2nd attempt at the TACEdeb clinical trial i'm in. I was just released yesterday after one heck of a hell week in recovery...I went through almost all the post embo syndroms but couldnt be happier. They managed to not only wipe out all the visible liver tumors I had but also a good portion of my liver haha. I didnt have all small spots either we're talking 5-6 tumors ranging from 2.5cm-5.25cm all gone!! I'm pretty confident these results are not typical for a Tace or any other embolization process but you have to keep persistent. Also still not done in this battle but enjoying a lilttle victory right now. I'm trying to not get too excited as I know recurrence is very high in HCC. Thanks MSK!!

    Stage4Liver/TACE
    Congratulations!!! My husband also had the TACE procedure twice and at his last CT scan show no new tumors and couldn't see any of the old oneSSSSSS.
    We don't go back for 4 months for another one. Best of luck to you....
    SLG
  • westie66
    westie66 Member Posts: 642

    Hi Cheryl,
    The procedures

    Hi Cheryl,

    The procedures in practice are pretty much identical, someone correct me if I’m wrong. However with the process you describe the Therasphere is typically a glass bead with y-90 radioactive material that is then embolized into the tumors..main difference Radiation not Chemo. Both processes are performed through the hepatic artery in the groin where the feed a catheter up into the liver performing an angiograph then follow that procedure with the embolization.

    The process I had done can be performed a few different ways.
    TAE - Bead block only no radiation or chemo introduced
    TACE - Bead block mixed into a slurry of chemotherapeutic drugs
    TACEdeb - This is the one I had where the chemo agent Doxorubicin is imbedded into the drug eluting beads and then slow released for longer dwell time and higher sustained concentrations to the tumors.

    The clinical trial I'm in at Sloan is comparing the TAE vs the TACEdeb. Currently TAE is their gold standard for this process.

    Ask your oncologist or interventional radiologist where you can get these products in Canada? Best wishes and prayers on your journey, keep your head held high and say F@*k Cancer to start your day!

    TACEdeb
    Hi: Thank you very much for this information. I will definitely check it out and pass to others here who are also inflicted. Hey, fellow CAnadians - anyone out there know where this procedure is available and what the results have been?
    Cheryl
  • westie66
    westie66 Member Posts: 642

    Hi Cheryl,
    The procedures

    Hi Cheryl,

    The procedures in practice are pretty much identical, someone correct me if I’m wrong. However with the process you describe the Therasphere is typically a glass bead with y-90 radioactive material that is then embolized into the tumors..main difference Radiation not Chemo. Both processes are performed through the hepatic artery in the groin where the feed a catheter up into the liver performing an angiograph then follow that procedure with the embolization.

    The process I had done can be performed a few different ways.
    TAE - Bead block only no radiation or chemo introduced
    TACE - Bead block mixed into a slurry of chemotherapeutic drugs
    TACEdeb - This is the one I had where the chemo agent Doxorubicin is imbedded into the drug eluting beads and then slow released for longer dwell time and higher sustained concentrations to the tumors.

    The clinical trial I'm in at Sloan is comparing the TAE vs the TACEdeb. Currently TAE is their gold standard for this process.

    Ask your oncologist or interventional radiologist where you can get these products in Canada? Best wishes and prayers on your journey, keep your head held high and say F@*k Cancer to start your day!

    Cancer bracelets
    Forgot this - you can purchase F@*k cancer bracelets from a place in Vancouver (woman who had cancer makes them) - they are silver, both men's and women's. If you want the info let me know.
    Cheryl
  • westie66
    westie66 Member Posts: 642
    slg said:

    Stage4Liver/TACE
    Congratulations!!! My husband also had the TACE procedure twice and at his last CT scan show no new tumors and couldn't see any of the old oneSSSSSS.
    We don't go back for 4 months for another one. Best of luck to you....
    SLG

    TACE Procedure
    Wow! that is great news! sounds like a procedure I need to try.
    Cheryl
  • Hi Sarah,
    I was also

    Hi Sarah,

    I was also diagnosed March of 2010. The first CT scan found the big tumor on the left (13.5cm) and they said there was something also on the right side. My surgery was cancelled at the first local hospital and I was sent home and referred to a liver specialist at one of our best local hospitals. Went into surgery about a week and a half later. He removed the big one without clean margin and my gallbladder. Was then told about a year to live as "there were a few more he couldnt take out" as he had to leave me some liver...He also said the CT's were pretty poor quality. That didnt sit real well with me the year to live. I'm 41 with a wife and 10yr old...my brother found Sloan Kettering in NY and started making the consult appointments. I had new scans up there and they found about 4 or 5 more in my liver largest being just over 5cm and a small one in each my adrenal and lung. So I really dont know if they were there and the poor quality first scans didnt show them or if it progressed? Sloan has about 15 people that specialize in Liver Cancer and have a group approach. I went in for a chemoembolization a week or so ago and it had to be stopped because the artery started to tear, disection I think is what its called, so was kicked down again. Dont get me wrong I was pretty disappointed and discouraged and have my moments but got over it pretty quickly. The good news is we're making another run at it in a couple weeks after it heals. I guess I try to find the positive things and grasp on to those things. I also like to read the stories where the prognosis is less than a year and the person is still kicking it 3,5,10 15 years down the road.

    Cancer & the thought of death literally consumed every inch of me physically and mentally for at least 5 maybe even 6 weeks from the start of this. All I did was surf the internet reading article after article on HCC and as you know its pretty damn tough to find anything positive about the outcome. I noticed my brother had put a F*ck Cancer profile picture up on his FB account and I just started to say the same thing to myself....F*CK Cancer!! I really wanted to take my life back and I have as much as possible, never went on disability, and havent looked back yet. I look at it this way...if I do only have a yearish left on this earth I sure as hell want to enjoy it with family & friends and not spend it in misery or alone! I've met some great people in the past couple months and have no problem talking about what I've been through so far. People are usually pretty shocked when they find out I'm stage 4 and what I've all had done in a short time and still working full time which includes traveling every other week for work. I've lost some weight about 20#'s but stated to gain a few of those back. I dont know how to tell someone to have the positive outlook as its always in the back of my mind, the fears, the emotional rollercoaster, the setbacks and the what if's... but it is what it is and I have it.

    I also have an awesome group of family and friends that help keep me active. Ironically a really close friend of mine who plays the electric guitar started working with the Leukemia & Lymphoma Society a few months prior to my diagnosis. They were working on remaking a song written 10 years ago for another cancer patient that was given 3 months to live. I had the pleasure to meet the man that wrote and performed the song for his best friend. I have to say it was really hard for me to listen to it (I was only out of surgery about a week or so about a month after diagnosis). I now listen to it several times a week as the second half of the song is where he beats his cancer... it's on i-tunes by CoryZ or you can check it out on ThisTimeTomorrow.org or facebook. I've also been working on bringing God back into my life and ask the big guy for help. Hope, prayer, trying to do the right things, holding on to the positives and laughter are all part of my plan!

    This comment has been removed by the Moderator
  • SarahD
    SarahD Member Posts: 139
    unknown said:

    This comment has been removed by the Moderator

    Mike I am so happy for you!
    Mike I am so happy for you! No one said batteling canecer of any kind is easy. I try to tell my dad to look on the bright side of thing because there always is a bright side! Im a nurse in a medical ICU so I see alot of SICK patients. I told him how lucky he is to have a cancer that is being treated with procedures and surgery and not months of chemo that make you sick as ****! Lets all beat this together :)
  • Pennymac02
    Pennymac02 Member Posts: 332 Member

    Hep C, cirrhosis and liver cancer
    Mike, My husband would never do this, so I am doing it for my own information. My husband was confirmed with HCC in January. They found the tumor on a routine ultrasound in Nov. 2009, as he also was undergoing observation for his Hep C. We go to Medical College of VA in Richmond every three to four months. He had a radiofrequency ablation treatment in January for one tumor they said was approx 3 cm. We were supposed to go back in six weeks for his recheck and to discuss evaluating him for transplant. At that time, we were told that his one tumor had now become 10 to 12 tumors involving both lobes of the liver. How can that happen in six weeks time. Now we are looking at a new treatment called sirspheres, which involves injecting him with radioactive beads directly into the hepatic artery that leads to the tumors. It is supposed to shrink them. We are scheduled for May 6. Have you or anyone you know had this treatment done? There is very little real information about it on the internet, and the doctors are very evasive. They have not given us any time line, because right now his liver is still functioning well. Just as you said, he feels great right now, and I almost hate for him to have this done. I would love to talk to anyone who has had it done, or who knows someone who has. They are also going to put him on a new cancer drug called Nexavar. Anyone out there with info on that would be appreciated too.

    Hep C, cirrhosis and liver cancer
    My husband just got home from having a bland embolization on his >3.5 tumor, the other 2.0 tumor they left alone due to its "location". Dr says his liver function is too compromised from the cirrhosis to be able to use the chemo. He will be rescheduled for CT in about 4-6 weeks (being treated at the V.A.) Your post just sounds scarily like exactly what we've been going thru, right down to the part where he wouldn't post this for himself.Also, are you dealing with any encephalopathy issues?
  • stage4liver
    stage4liver Member Posts: 46

    Hep C, cirrhosis and liver cancer
    My husband just got home from having a bland embolization on his >3.5 tumor, the other 2.0 tumor they left alone due to its "location". Dr says his liver function is too compromised from the cirrhosis to be able to use the chemo. He will be rescheduled for CT in about 4-6 weeks (being treated at the V.A.) Your post just sounds scarily like exactly what we've been going thru, right down to the part where he wouldn't post this for himself.Also, are you dealing with any encephalopathy issues?

    Penny,
    Sorry to hear of your

    Penny,

    Sorry to hear of your husband and this terrible disease. Just a an FYI at Sloan Kettering the #2 cancer hospital (2010 US NEWS rankings) in the nation, TAE - bland is their "gold standard" treatment when it comes to embolization. I got the TACEdb in their phase 2 randomized clinical trial comparing TAE vs. TACEdb. They are currently studying if there is a benefit to one over the other. One problem with TACE is it is more prone to destroying the arteries preventing further TACE proceedures whereas TAE typically doesn't have that effect...that was my understanding. I also read a European study and that one leaned towards TACEdb being the best of the three (TAE, TACE, TACEdb) but I guess that's subject to larger trials and further research.

    God bless and I wish your husband and your family the best!
  • Pennymac02
    Pennymac02 Member Posts: 332 Member

    Penny,
    Sorry to hear of your

    Penny,

    Sorry to hear of your husband and this terrible disease. Just a an FYI at Sloan Kettering the #2 cancer hospital (2010 US NEWS rankings) in the nation, TAE - bland is their "gold standard" treatment when it comes to embolization. I got the TACEdb in their phase 2 randomized clinical trial comparing TAE vs. TACEdb. They are currently studying if there is a benefit to one over the other. One problem with TACE is it is more prone to destroying the arteries preventing further TACE proceedures whereas TAE typically doesn't have that effect...that was my understanding. I also read a European study and that one leaned towards TACEdb being the best of the three (TAE, TACE, TACEdb) but I guess that's subject to larger trials and further research.

    God bless and I wish your husband and your family the best!

    CT scheduled
    Hubby has been having yucky symptoms this week. Assorted aches and pains, low grade fever,leg edema, extreme nausea. We're working with the VA on his treatment, and just got a letter yesterday that the follow up CT is scheduled for the first week of September. They hopefully will be able to tell if the tumor is shrinking after the TAE. Fingers (and toes) crossed.
  • rancherswifecw
    rancherswifecw Member Posts: 8

    Hi Christine,
    Yes my AFP

    Hi Christine,

    Yes my AFP values in blood were like 6800 and they're suppose to be i think under 20. I had extensive blood work done 2yrs prior and nothing out of the norms...Best wishes on your new scans!

    My Brother
    Hi Christine, I wondered if you have done any reading o9n the afp? My brothers goes from 13,000 to 15,000 the VA says they have never seen this.
    Have your proteins gone down or are you on a diet?
    Blessings to you and yours
  • rancherswifecw
    rancherswifecw Member Posts: 8

    Hep C, cirrhosis and liver cancer
    Mike, My husband would never do this, so I am doing it for my own information. My husband was confirmed with HCC in January. They found the tumor on a routine ultrasound in Nov. 2009, as he also was undergoing observation for his Hep C. We go to Medical College of VA in Richmond every three to four months. He had a radiofrequency ablation treatment in January for one tumor they said was approx 3 cm. We were supposed to go back in six weeks for his recheck and to discuss evaluating him for transplant. At that time, we were told that his one tumor had now become 10 to 12 tumors involving both lobes of the liver. How can that happen in six weeks time. Now we are looking at a new treatment called sirspheres, which involves injecting him with radioactive beads directly into the hepatic artery that leads to the tumors. It is supposed to shrink them. We are scheduled for May 6. Have you or anyone you know had this treatment done? There is very little real information about it on the internet, and the doctors are very evasive. They have not given us any time line, because right now his liver is still functioning well. Just as you said, he feels great right now, and I almost hate for him to have this done. I would love to talk to anyone who has had it done, or who knows someone who has. They are also going to put him on a new cancer drug called Nexavar. Anyone out there with info on that would be appreciated too.

    My Brother
    Hey, sorry about all this, I know how it was for brother. They took him off the list for a transplant. He is at the VA in La Jolla CA. He had that deal where they shoot the stuff up there I thought it was interfuron, cant remember but, it just made more and now his protein count is 13,000 to 15,000 iron goes way up then down normal.
    This is crazy stuff.
    I told my bro not to put that tazer in him to wait for the transplant. That this made him worse I think, he is now on these chemo pills that only 5 in the US are on sorafinib 120ml and linifaniv something like that made him very sick. Good news is he is close to God and his Pastor. I love my bro.
    I dont know about your pills, sorry but I bet you can google them! or put it in the search engine here!
    God Bless You and Yours