Diagnosed with large mass liver cancer- terrible odds?

ottawa123
ottawa123 Member Posts: 3
in Liver Cancer #1
Hi,
My dad was diagnosed with primary liver cancer (large mass 10x11x10 cm as of one month ago-perhaps bigger now but yet to have another scan). My dad was in good health (he did not have cirrhosis or hep c) but has lost a lot of weight in the last few months. I was wondering whether there is much hope here given the size of the mass and weight loss from the cancer. An oncology surgeon suggested yttrium therapy as the best treatment-my dad is seeing another onc surgeon tomorrow for opionions.

Feeling like things are really, really bleak...

Thanks for any thoughts.
«1

Comments

  • march00
    march00 Member Posts: 20
    #2
    GET IT OUT
    Get that thing out as soon as possible if you can.
    Go to big hospitals who do this all the time.
    I went to syracuse first and they decided not to do the surgery until
    the last minute
    Those tumors grow fast if they have a good blood supply
    Nick
  • Darryl2010
    Darryl2010 Member Posts: 15
    #3
    Listen to march00 - don't
    Listen to march00 - don't listen to anyone unless they are talking surgical removal! The reason? Removal is the only known cure for liver cancer. Chemotherapy is not always effective for those of us with liver cancer.

    Also, go to one of the big cancer hospitals. I travel from central FL to MD Anderson Cancer Center in Houston, TX. When discovered, the doctors here did not consider me a candidate for resection of my liver due to the tumor size - 19cm. The doctors in TX didn't blink and performed two cutting edge procedures to get me ready for surgery - procedures that would not have been available in my local hospital.

    Read the boards here, keep your thoughts positive because all is not lost. There are treatments available that will give your dad more time than you may think, just looking at the dismal statistics. I was diagnosed in May 2010 and am still fighting.

    Don't give up!
    Darryl
  • rcpallad
    rcpallad Member Posts: 1
    #4
    Darryl2010 said:

    Listen to march00 - don't
    Listen to march00 - don't listen to anyone unless they are talking surgical removal! The reason? Removal is the only known cure for liver cancer. Chemotherapy is not always effective for those of us with liver cancer.

    Also, go to one of the big cancer hospitals. I travel from central FL to MD Anderson Cancer Center in Houston, TX. When discovered, the doctors here did not consider me a candidate for resection of my liver due to the tumor size - 19cm. The doctors in TX didn't blink and performed two cutting edge procedures to get me ready for surgery - procedures that would not have been available in my local hospital.

    Read the boards here, keep your thoughts positive because all is not lost. There are treatments available that will give your dad more time than you may think, just looking at the dismal statistics. I was diagnosed in May 2010 and am still fighting.

    Don't give up!
    Darryl

    Primary Liver Cancer Hepatocellular Carcinoms
    I have the same problem. I live in Florida and have been to MD Anderson twice since my diagnosis 3 months ago.All they are doing for me is the Nexovar Chemo and getting ready for The therasphere radiation Injections in the groin directly into the tumors. Can you tell me what they did for you please.
    They tell me surgery is not an option

    Robert Palladino
    954-494-7570
  • Twomorefolks
    Twomorefolks Member Posts: 6
    #5
    Darryl2010 said:

    Listen to march00 - don't
    Listen to march00 - don't listen to anyone unless they are talking surgical removal! The reason? Removal is the only known cure for liver cancer. Chemotherapy is not always effective for those of us with liver cancer.

    Also, go to one of the big cancer hospitals. I travel from central FL to MD Anderson Cancer Center in Houston, TX. When discovered, the doctors here did not consider me a candidate for resection of my liver due to the tumor size - 19cm. The doctors in TX didn't blink and performed two cutting edge procedures to get me ready for surgery - procedures that would not have been available in my local hospital.

    Read the boards here, keep your thoughts positive because all is not lost. There are treatments available that will give your dad more time than you may think, just looking at the dismal statistics. I was diagnosed in May 2010 and am still fighting.

    Don't give up!
    Darryl

    Darryl:
    Did you have portal
    Darryl:

    Did you have portal vein thrombosis? What treatment has been done on you? My husband diagnosed four weeks ago with 15 cm tumor, portal vein thrombosis, and possible 2.5 cm malignant tumor in left lobe. NO UNDERLYING liver disease which is baffling doctors. Confirmed HCC. He is getting treated at Mayo in Jax. Looking at other hospitals in US that specialize in liver disease, treatment and transplant (living, deceased, and ex-vivo). Any input appreciated. oh, and he is healthy except fatigue and some soreness from liver size. We also have 2 year old daughter.

    Sheila
  • Twomorefolks
    Twomorefolks Member Posts: 6
    #6
    Darryl2010 said:

    Listen to march00 - don't
    Listen to march00 - don't listen to anyone unless they are talking surgical removal! The reason? Removal is the only known cure for liver cancer. Chemotherapy is not always effective for those of us with liver cancer.

    Also, go to one of the big cancer hospitals. I travel from central FL to MD Anderson Cancer Center in Houston, TX. When discovered, the doctors here did not consider me a candidate for resection of my liver due to the tumor size - 19cm. The doctors in TX didn't blink and performed two cutting edge procedures to get me ready for surgery - procedures that would not have been available in my local hospital.

    Read the boards here, keep your thoughts positive because all is not lost. There are treatments available that will give your dad more time than you may think, just looking at the dismal statistics. I was diagnosed in May 2010 and am still fighting.

    Don't give up!
    Darryl

    Darryl:
    Did you have portal
    Darryl:

    Did you have portal vein thrombosis? What treatment has been done on you? My husband diagnosed four weeks ago with 15 cm tumor, portal vein thrombosis, and possible 2.5 cm malignant tumor in left lobe. NO UNDERLYING liver disease which is baffling doctors. Confirmed HCC. He is getting treated at Mayo in Jax. Looking at other hospitals in US that specialize in liver disease, treatment and transplant (living, deceased, and ex-vivo). Any input appreciated. oh, and he is healthy except fatigue and some soreness from liver size. We also have 2 year old daughter.

    Sheila
  • MrsTigger
    MrsTigger Member Posts: 14
    #7
    Twomorefolks said:

    Darryl:
    Did you have portal
    Darryl:

    Did you have portal vein thrombosis? What treatment has been done on you? My husband diagnosed four weeks ago with 15 cm tumor, portal vein thrombosis, and possible 2.5 cm malignant tumor in left lobe. NO UNDERLYING liver disease which is baffling doctors. Confirmed HCC. He is getting treated at Mayo in Jax. Looking at other hospitals in US that specialize in liver disease, treatment and transplant (living, deceased, and ex-vivo). Any input appreciated. oh, and he is healthy except fatigue and some soreness from liver size. We also have 2 year old daughter.

    Sheila

    Shelia
    Hey my name is Shay. How are the Dr at Mayo in Jax? Is that Jax in Fla? I'm trying to figure out if I need to find my dad another Dr. My dad has HCC and like 5 other spots thru out where it has spread. We live in SC but if the Dr are good at Mayo in Jax Fla well that's only A 4 to 5 hr drive for us for a second opinion. Please write back and let me know so hopefully I can help him!

    Sincerely
    Shay
  • blueheaven56
    blueheaven56 Member Posts: 18
    #8
    MrsTigger said:

    Shelia
    Hey my name is Shay. How are the Dr at Mayo in Jax? Is that Jax in Fla? I'm trying to figure out if I need to find my dad another Dr. My dad has HCC and like 5 other spots thru out where it has spread. We live in SC but if the Dr are good at Mayo in Jax Fla well that's only A 4 to 5 hr drive for us for a second opinion. Please write back and let me know so hopefully I can help him!

    Sincerely
    Shay

    Granted, MD Anderson and
    Granted, MD Anderson and others are great hospitals, but I would suggest going to a hospital that specializes in ALL facets of liver disease as well as HCC. University of Pittsburgh, Cleveland Clinic, Mayo. Pittsburgh was among the first to do liver transplants and/or liver directed therapies for HCC in the US.

    Many times, radioembolization Yttrium 90 (sirspheres or theraspheres) or chemoembolization (TACE etc)is done FIRST before surgery so that the blood supply to the tumor is cut down. HCC is fed primarily through the hepatic artery so these treatments are directly injected into the arteries feeding the tumor.

    DO YOUR HOMEWORK. As scary as this is, learn as much as you can so that you can make informed decisions. Don't believe the statistics either...everyone is different.

    My husband had 9 small tumors and a larger one in the right lobe, and one tumor in the left lobe. He underwent SIR spheres in Feb. and Mar. All the little tumors (9) are gone and the other two are shrinking. We are hoping that he will officially downgraded in May and will be able to be listed for a transplant. He cannot have surgery because he has cirrhosis from Hep C.

    Mrs. Tigger...what are they offering for therapy?
  • blueheaven56
    blueheaven56 Member Posts: 18
    #9
    MrsTigger said:

    Shelia
    Hey my name is Shay. How are the Dr at Mayo in Jax? Is that Jax in Fla? I'm trying to figure out if I need to find my dad another Dr. My dad has HCC and like 5 other spots thru out where it has spread. We live in SC but if the Dr are good at Mayo in Jax Fla well that's only A 4 to 5 hr drive for us for a second opinion. Please write back and let me know so hopefully I can help him!

    Sincerely
    Shay

    My husband is receiving his
    My husband is receiving his care through the university of maryland in Baltimore. Also, forgot to mention Johns Hopkins on the hospital list.
  • XtremediverHCC
    XtremediverHCC Member Posts: 63 Member
    #10
    blueheaven56 said:

    Granted, MD Anderson and
    Granted, MD Anderson and others are great hospitals, but I would suggest going to a hospital that specializes in ALL facets of liver disease as well as HCC. University of Pittsburgh, Cleveland Clinic, Mayo. Pittsburgh was among the first to do liver transplants and/or liver directed therapies for HCC in the US.

    Many times, radioembolization Yttrium 90 (sirspheres or theraspheres) or chemoembolization (TACE etc)is done FIRST before surgery so that the blood supply to the tumor is cut down. HCC is fed primarily through the hepatic artery so these treatments are directly injected into the arteries feeding the tumor.

    DO YOUR HOMEWORK. As scary as this is, learn as much as you can so that you can make informed decisions. Don't believe the statistics either...everyone is different.

    My husband had 9 small tumors and a larger one in the right lobe, and one tumor in the left lobe. He underwent SIR spheres in Feb. and Mar. All the little tumors (9) are gone and the other two are shrinking. We are hoping that he will officially downgraded in May and will be able to be listed for a transplant. He cannot have surgery because he has cirrhosis from Hep C.

    Mrs. Tigger...what are they offering for therapy?

    Blueheaven56, I had
    Blueheaven56, I had resection surgery with cirrhosis caused by Hep-C, I am curious why the doctors tell you that your husband can't have it done. Is his cirrhosis so involved that the liver remnant would be too small for sufficient function? Great to hear that SIR is working for him, and I wish you all the best.
  • Betta
    Betta Member Posts: 9
    #11
    Y-90
    Hi there,

    I am so sorry for your dad.
    I do really hope he will get the right treatment soon and be healthy again.
    My mother had Y-90 in November 2011 and it worked for her (her tumor was not as big as your dads. This therapy made her really really tired for 2 weeks. But her tumor shrunk a lot.

    I also know a man who had two Y-90 sessions. At the time he had no option left except Y-90 therapy. His tumor was similar size to your dad's one. After a year, he had a transplant last month. This therapy works for some people.

    I hope this helps ...
  • MrsTigger
    MrsTigger Member Posts: 14
    #12
    blueheaven56 said:

    Granted, MD Anderson and
    Granted, MD Anderson and others are great hospitals, but I would suggest going to a hospital that specializes in ALL facets of liver disease as well as HCC. University of Pittsburgh, Cleveland Clinic, Mayo. Pittsburgh was among the first to do liver transplants and/or liver directed therapies for HCC in the US.

    Many times, radioembolization Yttrium 90 (sirspheres or theraspheres) or chemoembolization (TACE etc)is done FIRST before surgery so that the blood supply to the tumor is cut down. HCC is fed primarily through the hepatic artery so these treatments are directly injected into the arteries feeding the tumor.

    DO YOUR HOMEWORK. As scary as this is, learn as much as you can so that you can make informed decisions. Don't believe the statistics either...everyone is different.

    My husband had 9 small tumors and a larger one in the right lobe, and one tumor in the left lobe. He underwent SIR spheres in Feb. and Mar. All the little tumors (9) are gone and the other two are shrinking. We are hoping that he will officially downgraded in May and will be able to be listed for a transplant. He cannot have surgery because he has cirrhosis from Hep C.

    Mrs. Tigger...what are they offering for therapy?

    blueheaven56
    The only thing they did was radiation (sorry for spelling) at a spot he had on his spine that was bothering him and now they have him on nexavar. He is having a hard time taking the full dose of 4 a day so he is only taking the 2. My mom and I had to ask his Dr to put him in physical therapy. He has lost all muscles he had in his arms and legs. He has a spot a T2, T4, his liver, his lung, and one in the adrenail gland. They say it all is from the liver. He doesn't have hepatitis nor is he a drinker so they say he is one of the strange cases. We didn't even know he had the cancer. He was having nerve problems in his arm so we thought it was a pinch nerve. He went to the Dr had a MRI done the next thing we knew they was setting him up for the PET scan, then a biopsy and told us he had hcc. My dad is 71 and I don't think the Dr really wants to do to much to help him. To be honest with you and I'm scared and trying to do all I can to help him. I will talk to his Dr about the Sphere things. Maybe he can get that done. Any info u give I appreciate it so much.
    I wish you and your husband the best of luck. Ill pray all goes well with him.

    Thanks again
    Shay
  • blueheaven56
    blueheaven56 Member Posts: 18
    #13
    XtremediverHCC said:

    Blueheaven56, I had
    Blueheaven56, I had resection surgery with cirrhosis caused by Hep-C, I am curious why the doctors tell you that your husband can't have it done. Is his cirrhosis so involved that the liver remnant would be too small for sufficient function? Great to hear that SIR is working for him, and I wish you all the best.

    Surgery was not an option
    Surgery was not an option for him due to his cirrhosis. this was also due to Hep C. He would not have enough functional liver left for him to survive. With the number of lesions, even if his liver function was better, surgery would not have been an option.
  • betzee
    betzee Member Posts: 3
    #14
    my husband got the Liver
    my husband got the Liver cancer dx 2 weeks ago I researched and found Dr Yuman Fong at Sloan Kettering. Surgery is on May 1st. WE are very impressed so far. His tumor is 9cm and half of his liver will need to be removed, in addition to possibly some lymph nodes.
  • harrietpeter
    harrietpeter Member Posts: 6
    #15
    betzee said:

    my husband got the Liver
    my husband got the Liver cancer dx 2 weeks ago I researched and found Dr Yuman Fong at Sloan Kettering. Surgery is on May 1st. WE are very impressed so far. His tumor is 9cm and half of his liver will need to be removed, in addition to possibly some lymph nodes.

    I am scheduled to go in for
    I am scheduled to go in for surgery myself soon. I did chemo a few years back and the liver cancer went away...or so I thought. It's now back and I think surgery is the only option. This is encouraging to see that it may work this time around! I was beginning to lose hope.
  • Twomorefolks
    Twomorefolks Member Posts: 6
    #16
    MrsTigger said:

    Shelia
    Hey my name is Shay. How are the Dr at Mayo in Jax? Is that Jax in Fla? I'm trying to figure out if I need to find my dad another Dr. My dad has HCC and like 5 other spots thru out where it has spread. We live in SC but if the Dr are good at Mayo in Jax Fla well that's only A 4 to 5 hr drive for us for a second opinion. Please write back and let me know so hopefully I can help him!

    Sincerely
    Shay

    I have not logged on in a while, Shay. I have been busy with my husband's care. We have been pleased with the doctors at Mayo. Some we like better than others. What I do like is that they work in teams and they talk with the other Mayo Clinics as well as other hospitals. They have been very quick in getting treatment for my husband. I have had several other opinions on my husband's case (Johns Hopkins, MD Anderson in Orlando, Florida Hospital) and am still waiting to hear back from several other groups. All have agreed that his course of treatment is the best option for now. My husband has a 15 cm tumor occupying his entire right lobe and macro-vascular invasion. He has a 2.5 cm tumor on his left lobe. He started Nexavar 10 days ago and had chemoembolization with DEB today. He has no underlying liver disease and has been healthy as a horse up until now. It's only been six weeks since his diagnosis so everything is overwhelming. With treatment he has been given 3-6 months. We won't accept that and are doing everything we can to fight this awful disease. He has met with a naturpath doctor and we are looking at going to The Hippocrates Institute in Palm Beach after he recovers from this treatment. I am also looking at overseas options if his treatment does show good results. And of course, prayer! The power of prayer is amazing as well as the patient's own spirit and determination. Best of luck to you!
  • CrazywithFear19
    CrazywithFear19 Member Posts: 5
    #17
    Twomorefolks said:

    I have not logged on in a while, Shay. I have been busy with my husband's care. We have been pleased with the doctors at Mayo. Some we like better than others. What I do like is that they work in teams and they talk with the other Mayo Clinics as well as other hospitals. They have been very quick in getting treatment for my husband. I have had several other opinions on my husband's case (Johns Hopkins, MD Anderson in Orlando, Florida Hospital) and am still waiting to hear back from several other groups. All have agreed that his course of treatment is the best option for now. My husband has a 15 cm tumor occupying his entire right lobe and macro-vascular invasion. He has a 2.5 cm tumor on his left lobe. He started Nexavar 10 days ago and had chemoembolization with DEB today. He has no underlying liver disease and has been healthy as a horse up until now. It's only been six weeks since his diagnosis so everything is overwhelming. With treatment he has been given 3-6 months. We won't accept that and are doing everything we can to fight this awful disease. He has met with a naturpath doctor and we are looking at going to The Hippocrates Institute in Palm Beach after he recovers from this treatment. I am also looking at overseas options if his treatment does show good results. And of course, prayer! The power of prayer is amazing as well as the patient's own spirit and determination. Best of luck to you!

    Stem cell
    Hi Twomorefolks,

    My fiance was just diagnosed with advanced cholangiocarcinoma and was given 6 months to live. The oncologist said his right liver is 75% spotted with cancer and also has a big tumour of 5 cm growing on it. His bile duct is obstructed and not sure whether his pancreas is or not. We're seeking a 2nd opinion at MD Anderson next week. I have been frantic with fear and it has been painful watching him suffer from jaundice, abdominal pain, loss of appetite, fatigue and occasional memory loss.

    I read about stem cell therapy or transplantation which is being researched to treat or at least stop new liver cancer cells from forming. It seems that stem cell transplant or therapy for liver cancer is not available in USA due to red tape, extremely high costs and not being covered by insurance. Moreover, pharmaceuticals don't want to see any cure due to obvious reasons. I read that it is available in Germany, China, India and Thailand. Perhaps you can try to check this out. I might try this if MD Anderson says my fiance is untreatable.

    Good luck and stay strong.
  • MrsTigger
    MrsTigger Member Posts: 14
    #18
    Twomorefolks said:

    I have not logged on in a while, Shay. I have been busy with my husband's care. We have been pleased with the doctors at Mayo. Some we like better than others. What I do like is that they work in teams and they talk with the other Mayo Clinics as well as other hospitals. They have been very quick in getting treatment for my husband. I have had several other opinions on my husband's case (Johns Hopkins, MD Anderson in Orlando, Florida Hospital) and am still waiting to hear back from several other groups. All have agreed that his course of treatment is the best option for now. My husband has a 15 cm tumor occupying his entire right lobe and macro-vascular invasion. He has a 2.5 cm tumor on his left lobe. He started Nexavar 10 days ago and had chemoembolization with DEB today. He has no underlying liver disease and has been healthy as a horse up until now. It's only been six weeks since his diagnosis so everything is overwhelming. With treatment he has been given 3-6 months. We won't accept that and are doing everything we can to fight this awful disease. He has met with a naturpath doctor and we are looking at going to The Hippocrates Institute in Palm Beach after he recovers from this treatment. I am also looking at overseas options if his treatment does show good results. And of course, prayer! The power of prayer is amazing as well as the patient's own spirit and determination. Best of luck to you!

    Twomorefolks
    Hey thanks for the information. I hope you and your husband are doing ok! Right now my dad is in the hospital. He got put in yesterday. Said his kidneys was shutting down and not sure why. His blood sugar is going from real low to real high. So they had to take him off the nexavar for now. The only thing my dads Dr has said was for him to take the nexavar and there was nothing else out there he can take. I had asked about the sphare thing and he said he hasn't heard of it. So that kind of scares me. The Dr seems nice but doesn't seem to know much! Well I wish u both the best of luck. Got to try and get some rest to go back to the hospital in the morning. Thanks again any more info will be greatful

    Sincerely.
    shay
  • bt1943
    bt1943 Member Posts: 6
    #19
    harrietpeter said:

    I am scheduled to go in for
    I am scheduled to go in for surgery myself soon. I did chemo a few years back and the liver cancer went away...or so I thought. It's now back and I think surgery is the only option. This is encouraging to see that it may work this time around! I was beginning to lose hope.

    brain tumors, now in liver
    My 40 year old son had brain surgery June, 2011
    to remove two hemangiopericytoma tumors and did
    35 radiation treatments to shrink another in the back
    of the brain. Last MRI was April, 2012 which showed good
    results. He started having pain that we thought was appendix,
    turned out to be same type tumors in liver/stomach. Oncologist
    said this is very rare. Sees another oncologist in Charlotte
    on Monday. Anyone heard of this?
  • Twomorefolks
    Twomorefolks Member Posts: 6
    #20
    MrsTigger said:

    Twomorefolks
    Hey thanks for the information. I hope you and your husband are doing ok! Right now my dad is in the hospital. He got put in yesterday. Said his kidneys was shutting down and not sure why. His blood sugar is going from real low to real high. So they had to take him off the nexavar for now. The only thing my dads Dr has said was for him to take the nexavar and there was nothing else out there he can take. I had asked about the sphare thing and he said he hasn't heard of it. So that kind of scares me. The Dr seems nice but doesn't seem to know much! Well I wish u both the best of luck. Got to try and get some rest to go back to the hospital in the morning. Thanks again any more info will be greatful

    Sincerely.
    shay

    Ms. Tigger
    You need to get your dad to another hospital. If this guys doesn't know about spheres you are in the wwrong place. It is quite common. You said you aren't far from Mayo in Jax. I suggest you go there. Or perhaps Duke. My husband is tolerating the chemoembolization quite well. Jay has had some problems with kidney function as well, but this is due to dehydration. He is doing fine now. You should talk to his doctor about getting home health in to put in a midline and administer hydration at home. Jay gets several liters of hydration at the house per week and his saline bags include the D5 calories so he also gets calories in him. Hydration and food consumption are a challenge with any cancer, especially ones that have large tumors taking up space in their belly. Also, blood sugar from what I understand has nothing to do with nexavar. It has to due with nutrition. The big concern with nexavar is high blood pressure and hand and foot disease. There are tons of treatments for liver cancer depending on his situation, tumor size, thrombosis, etc. Is your dad eating? Jay eats some solid foods but there's not enough calories in the food he likes right now so I make him healthy shakes with about 1500 calories per shake. I use Scandishake powder and Whey powder to boost the calories and protein. I use rice milk which is better than whole milk. Ensure shakes are fine but they are hard on the kidneys so for every ensure shake he must drink a glass of water. I don't log on here much so feel free to email me at sfolk@keewin.net I check my email daily. I may not always have the time to respond daily in detail but I will get back to you. Best of luck. Sheila
  • sdp
    sdp Member Posts: 181
    #21
    Darryl2010 said:

    Listen to march00 - don't
    Listen to march00 - don't listen to anyone unless they are talking surgical removal! The reason? Removal is the only known cure for liver cancer. Chemotherapy is not always effective for those of us with liver cancer.

    Also, go to one of the big cancer hospitals. I travel from central FL to MD Anderson Cancer Center in Houston, TX. When discovered, the doctors here did not consider me a candidate for resection of my liver due to the tumor size - 19cm. The doctors in TX didn't blink and performed two cutting edge procedures to get me ready for surgery - procedures that would not have been available in my local hospital.

    Read the boards here, keep your thoughts positive because all is not lost. There are treatments available that will give your dad more time than you may think, just looking at the dismal statistics. I was diagnosed in May 2010 and am still fighting.

    Don't give up!
    Darryl

    Two stage resection
    Hi darryl.,

    My story as follows ;



    Hi DD,

    Can u pl advise, my story is as follows;

    I have mets to all segments of liver on dx on 31 dec 2011. Started FOLFOX plus erbitux in jan 2012.  Folfox plus erbitux bi weekly and erbitux alone weekly.

    After two months of the chemo liver mets reduced by 50% , hence I am responding to chemo. Earlier some mets were 13 cm and 11 cm in size were reduced to 5 cm and 6 cm.

    After that further two months of same chemo. Based on march 2012 Ct-pet got response from UCLA that I can get a  two stage resection, johns Hopkins says not a candidate for resection, mskcc Docs dr Fong and dr temple want to see me personally to decide further course of action.

    In india , one top surgeon in Mumbai is of the opinion that he can also do a two stage resection, first liver then liver and colon. I will wait for Ct- pet to be taken 15 may 2012 before I decide and after I send those reports to all three institutions and get their review or take on it. 

     Got a 3d triple phase CT done on advise of the local surgeon on 23 april 2012. That shows no further reduction but also no progression. Was a bit disappointed with that. 

    Oncologist says I got it prematurely and should wait till the current regimen is completed. Balance is one FOLFOX plus erbitux and two erbitux chemos due. I hope the onco is right and we see reduction in next Ct-pet due on May 15 th, 2012. He was of the opinion that the triple phase CT scan I did does not show necrosis that may have happened, so not to lose hope, and chemo is definitely working. 

    Problem in India is there is no system of a tumour board etc, and onco, surgeon etc all work differently and based on seniority of the Docs the opinion of the surgeon is not challenged by the radiologist or the oncologist ( they are considered lower than the surgeon) , so the patient is not treated as a whole person but what each doc perceives as per his expertise.

    The oncologist wants me on chemo for atleast 6 months , so further two months. Surgeon would rather cut me up now, radiologist not yet consulted as onco says "Sir spheres, Thera spheres" not an option for me at present. surgeon here says that more chemo can lead to liver toxicity. Currently , liver function test as done thru blood reports are all normal, so is creatinine etc.

    Side effects are severe neutropenia after FOLFOX ( managed by neupogen shots , 2 nos  everytime I get FOLFOX ),
    Severe rash and dryness of skin now on face which is very disturbing and unpleasant , constantly need to apply cream , which dries in 10 mins of application, acne on face etc, this one not very manageable. Also mild neuropathy , averse to cold stuff and tingling in the hands whenever I touch cold stuff. Also mouth sores, by which I cannot not tolerate any thing spicy or with even slightest chilli, and as u know Indian food is all about spice and chilli.

    I take supplements like avemar, AHCC, curcumin, chlorella/spirulina, milk thistle and graviola.
    I take them alternately , not all on a single day except curcumin and spirulina/ chlorella.

    And r-alpha lipoic acid and L-glutamine for countering neuropathy.

    Am mostly vegan, and have wheatgrass daily along with some juicing of fruits etc.
    Yoga for an hour approx 3 days a week.


    This is my story so far. Have completed 8 rounds of FOLFOX plus erbitux and 7 of erbitux alone.
    Next erbitux is tomorrow and then a CT-pet.

    Any advice, suggestion u have for me is welcome. I would like to know who ur liver surgeon was.

    My latest triple phase CT report is as follows,


    The report reads as follows;

    TRIPLE  PHASE CT scan of abdomen and pelvis. ( oral + iv contrast)
    ------------------------------------------------------------------------------------------

    The MDCT scan of abdomen and pelvis was performed on definition flash CT scanner with 5 mm slice thickness and 128 x 0.6  mm collimation. Retrospective 3D reconstruction of volumetric data was performed to obtain coronal and Sagitta
     Images in MIP / MPR images.

    Clinical Information : carcinoma colon with liver metastases
    -----------------------------------------------------------------------------

    Multiple calcified lesions with mild enhancement with measurements as follows -

    Segment 1 - 3.2 x 2 cm
    Segment 2 - 3 x 2.2 cm
    Segment 3 - 1.8 x 1.7 cm
    Segment 6, 7 - largest 4.3 x 3.6 cm
    Segment 8.    - 5 x 4.5 cm

    There is no intra or extra hepatic biliary  dilation.
    The hepatic and portal veins appear normal.

    The gall bladder, pancreas, spleen and both kidneys are normal.

    Mild narrowing with wall thickness noted in the sigmoid colon measuring 8 mm maximum thickness.

    Few small sub centimetre mesentric nodes.

    Urinary bladder is normal.

    There is no free fluid or significant retroperitoneal lymphadenopathy.

    IMPRESSION :
    ____________

    MRI findings reveal :

    1. Mild narrowing with wall thickness noted in the sigmoid colon measuring upto 8 mm in max thickness - in comparison to previous CT-PET in March 2012, the wall thickening has mildly reduced in size.

    2 There is no significant change in size of liver lesions.

    -----------------------------------------------------------

    Latest Ct- pet of 12 th may shows STABLE DiSEASE .

    Am much confused and worried. Any suggestions.


    Thanks

    Shitul patel 

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