Not a colorectal diagnosis but colorectal treatment??

SarahD
SarahD Member Posts: 139
edited March 2014 in Colorectal Cancer #1
My dad is 54 years old, Never been sick a day in his life! He was diagnosed with hepatocellular carcinoma (HCC) which is a form of primary liver cancer. He has had surgery in may, follow up scancs in august which revealed recurrence in the liver. We started a clinial trial in october which involved 2 oral chemo agents. Our follow up scans today showed no response to treatment, ther are more turmors and they are larger. The oncologist wants him to start IV chemo oxaliplatin, gemzar, and avastatin. He said these drugs have helped 20% of liver cancer patients. We are so afraod! Is this chemo going to knock him on his butt and make him sicker than the actual cancer? We dont want to give up but we also feel so helpless becuase everything has failed! Not sure if there is much more to do after this. I was just married in october and I am expecting my first baby. He said to me today "I hope I am round for your baby." THis is sooooo hard. WHat are the treatment cycles like for this chemo? any feedback would be greatly appreciated!

Comments

  • John23
    John23 Member Posts: 2,122 Member
    Sarah -

    Re:
    "Not sure if there is much more to do after this"

    There's plenty more! He can start by getting other opinions from
    qualified physicians that aren't members of the same group or
    association.

    To be turned out to a "clinical trial" within the first 6 months
    of any treatment, seems a bit odd to me.

    Get other opinions from other physicians.

    Best of health,

    John
  • geotina
    geotina Member Posts: 2,111 Member
    Sarah:
    Oxi is no walk in the park for many but my hubby had an excellent response to it when first diagnosed with colorectal, heavy liver tumor load, greatly reduced. Tell your Dad that when my hubby (age 60) was on Oxi last year, he was able to contiue working. Fatigue was his biggest enemy. Most side effecs are sensitivity to touching anything cold, no cold drinks, funny metal type taste on tip of tongue. George did not experience nausea, constipation, etc. although some do. Never had Gemzar. Lisa42 on this board is taking Gemzar so maybe she can fill you in on that drug.

    Take care - Tina
  • SarahD
    SarahD Member Posts: 139
    geotina said:

    Sarah:
    Oxi is no walk in the park for many but my hubby had an excellent response to it when first diagnosed with colorectal, heavy liver tumor load, greatly reduced. Tell your Dad that when my hubby (age 60) was on Oxi last year, he was able to contiue working. Fatigue was his biggest enemy. Most side effecs are sensitivity to touching anything cold, no cold drinks, funny metal type taste on tip of tongue. George did not experience nausea, constipation, etc. although some do. Never had Gemzar. Lisa42 on this board is taking Gemzar so maybe she can fill you in on that drug.

    Take care - Tina

    Thanks for your replies :)

    Thanks for your replies :)
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Treatment
    The oxy is very hard on the body and can cause side effects but if you let the doctor know of any side effects your dad is having they can adjust the dose. Oxy is a cumulative drug and it will start out ok, but then builds up in the system and tends to cause more side effects as the time goes on. It's an effective drug, but a hard one. Good luck and hope the best for your dad.

    Kim
  • SarahD
    SarahD Member Posts: 139

    Treatment
    The oxy is very hard on the body and can cause side effects but if you let the doctor know of any side effects your dad is having they can adjust the dose. Oxy is a cumulative drug and it will start out ok, but then builds up in the system and tends to cause more side effects as the time goes on. It's an effective drug, but a hard one. Good luck and hope the best for your dad.

    Kim

    Thank you annabelle! This is
    Thank you annabelle! This is the worst thing I could ever imagine to happen! I pray this treatment works becAuse I dont know if there is anything more.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Hi Sarah
    Please do a search and read about Modified Citrus Pectin (available for about $60 on Amazon.com). It has been shown to shrink tumors in the liver very quickly.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Gemzar
    Hi Sarah,

    I've taken most of the other chemos earlier in my treatment & am now taking a combination of Gemzar, Avastin, and Xeloda. I've had the oxaliplatin before & that will definitely be where your dad will be getting most of his side effects from. Neuropathy, oversensitivity to cold, tingling- tell him to keep as warm as possible and take alpha lipoic acid in capsule form along with vitamin B-6 and lysine tablets to help prevent neuropathy (pain and/or numbness) from becoming permanent. Most oncs, I believe, infuse a combo of calcium and magnesium with the oxaliplating to help prevent the nerve damage. Ask your dad to ask if his chemo nurses are giving him that and, if not, see if they can start!

    So far as the gemzar side effects go, it's a pretty easily tolerated drug, but it may be hard for your dad to realize that while dealing with the oxaliplatin effects. The biggest issue with gemzar is that it often makes the platelet count drop too low. When that's happened to me, I've been given a shot for it. There's another shot or series of shots that can also be given for the white blood cell count called either neupogen or neulasta. I can't think of the name of the shot for the platelets at the moment. The shots do help with that. Symptoms of problems with the platelets with the gemzar can be bruising or little pin point red dots under the skin (a sign of bleeding). I had some weird bruises that appeared on my shins and ankle areas- they're not sure if it's from the gemzar or not, but I think it is (I always get weird side effects that aren't listed :~
    The Avastin can cause the blood pressure to rise, so make sure your dad watches out for that. When on Avastin, it's a really good idea to get a blood pressure cuff/machine so that can be monitored at home. I had problems a while back with my blood pressure skyrocketing, then when I was put on blood pressure meds it dropped too quickly and I was having fainting spells. Fortunately, that's all under control now.

    I know this is hard- the best thing you can do for your dad and for the family is to be as positive as possible and help your dad be as proactive as possible. I have found that even when you have really good doctors, you are always your own best advocate. Second and third opinions are always good to get, also. What one doctor says can't be done, oftentimes another doctor (oncologist, radiologist, surgeon, etc) may think is possible after all.

    One more bit of advice... don't listen to survival statistics. Statistics by their very nature of being a statistic usually based on 5 yr survival rates, are ALWAYS outdated. Even if you read a survival statistic that was hot off the press today, it would likely still be based on patients who were diagnosed and treated at least 5 years ago. Five or more years ago, many of the drugs and treatments we have today were not available. So, based on that, actual survival rates should always be higher/better than whatever the most recent statistics state! This is a tough and nasty disease- I won't pretend otherwise, but there IS hope and there ARE many possibilities of treatment.
    Take cheer!

    Hugs and prayers,
    Lisa
  • SarahD
    SarahD Member Posts: 139
    lisa42 said:

    Gemzar
    Hi Sarah,

    I've taken most of the other chemos earlier in my treatment & am now taking a combination of Gemzar, Avastin, and Xeloda. I've had the oxaliplatin before & that will definitely be where your dad will be getting most of his side effects from. Neuropathy, oversensitivity to cold, tingling- tell him to keep as warm as possible and take alpha lipoic acid in capsule form along with vitamin B-6 and lysine tablets to help prevent neuropathy (pain and/or numbness) from becoming permanent. Most oncs, I believe, infuse a combo of calcium and magnesium with the oxaliplating to help prevent the nerve damage. Ask your dad to ask if his chemo nurses are giving him that and, if not, see if they can start!

    So far as the gemzar side effects go, it's a pretty easily tolerated drug, but it may be hard for your dad to realize that while dealing with the oxaliplatin effects. The biggest issue with gemzar is that it often makes the platelet count drop too low. When that's happened to me, I've been given a shot for it. There's another shot or series of shots that can also be given for the white blood cell count called either neupogen or neulasta. I can't think of the name of the shot for the platelets at the moment. The shots do help with that. Symptoms of problems with the platelets with the gemzar can be bruising or little pin point red dots under the skin (a sign of bleeding). I had some weird bruises that appeared on my shins and ankle areas- they're not sure if it's from the gemzar or not, but I think it is (I always get weird side effects that aren't listed :~
    The Avastin can cause the blood pressure to rise, so make sure your dad watches out for that. When on Avastin, it's a really good idea to get a blood pressure cuff/machine so that can be monitored at home. I had problems a while back with my blood pressure skyrocketing, then when I was put on blood pressure meds it dropped too quickly and I was having fainting spells. Fortunately, that's all under control now.

    I know this is hard- the best thing you can do for your dad and for the family is to be as positive as possible and help your dad be as proactive as possible. I have found that even when you have really good doctors, you are always your own best advocate. Second and third opinions are always good to get, also. What one doctor says can't be done, oftentimes another doctor (oncologist, radiologist, surgeon, etc) may think is possible after all.

    One more bit of advice... don't listen to survival statistics. Statistics by their very nature of being a statistic usually based on 5 yr survival rates, are ALWAYS outdated. Even if you read a survival statistic that was hot off the press today, it would likely still be based on patients who were diagnosed and treated at least 5 years ago. Five or more years ago, many of the drugs and treatments we have today were not available. So, based on that, actual survival rates should always be higher/better than whatever the most recent statistics state! This is a tough and nasty disease- I won't pretend otherwise, but there IS hope and there ARE many possibilities of treatment.
    Take cheer!

    Hugs and prayers,
    Lisa

    Thank you Lisa! This is
    Thank you Lisa! This is unbelievably hard! I think I feel so disappointed because so far all the other treatment has not worked for him so my hopes are in the gutter. My sister adn I are both Nurses and I dont know if that is a good thing or a bad thing, sometimes knowing too much makes me feel sick. At the same time sometimes I feel completly lost especially while in the doctors office. He is going to get a portacath placed tommorow, i know that is a basic thing but the thought of him needing one makes me ill. thank you for your support, I never thought i would find more comfort adn support in complete strangers than my own friends :)
  • bruins1971
    bruins1971 Member Posts: 227
    SarahD said:

    Thank you Lisa! This is
    Thank you Lisa! This is unbelievably hard! I think I feel so disappointed because so far all the other treatment has not worked for him so my hopes are in the gutter. My sister adn I are both Nurses and I dont know if that is a good thing or a bad thing, sometimes knowing too much makes me feel sick. At the same time sometimes I feel completly lost especially while in the doctors office. He is going to get a portacath placed tommorow, i know that is a basic thing but the thought of him needing one makes me ill. thank you for your support, I never thought i would find more comfort adn support in complete strangers than my own friends :)

    Side Effects
    Hey Sarah I am sorry to hear about your Dad but keep the Faith for only God knows how things will pan out. I am 38 with stage 4 colon and I am currently doing the Oxy with 5FU and was doing the Vectibix but that gave me a NASTY rash on my face and head to the point my skin would start to bleed. But again they stopped that and now I am only doing Oxy and 5FU and to be honest I have not had too many side effects. Some nausea, with sensitivity to cold during the days of chemo but it quickly wears off and then I get neuropathy in my feet which can get really bad but again mine has not been bad. Tell you Dad to keep up the fight now matter what he hears. Like someone else has said get 2nd and if needed 3rd opinions. There are some really great treatment centers out there. What part of the country do you live in? I will add your dad to my prayer list and in the mean time I offer this one to your Dad to use each and every day. Saint Peregrine is the patron Saint of cancer patients.


    Prayer to Saint Peregrine

    O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.
    For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
    (Pause here and silently recall the names of the sick for whom you are praying)
    Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
    Amen.
  • SarahD
    SarahD Member Posts: 139

    Side Effects
    Hey Sarah I am sorry to hear about your Dad but keep the Faith for only God knows how things will pan out. I am 38 with stage 4 colon and I am currently doing the Oxy with 5FU and was doing the Vectibix but that gave me a NASTY rash on my face and head to the point my skin would start to bleed. But again they stopped that and now I am only doing Oxy and 5FU and to be honest I have not had too many side effects. Some nausea, with sensitivity to cold during the days of chemo but it quickly wears off and then I get neuropathy in my feet which can get really bad but again mine has not been bad. Tell you Dad to keep up the fight now matter what he hears. Like someone else has said get 2nd and if needed 3rd opinions. There are some really great treatment centers out there. What part of the country do you live in? I will add your dad to my prayer list and in the mean time I offer this one to your Dad to use each and every day. Saint Peregrine is the patron Saint of cancer patients.


    Prayer to Saint Peregrine

    O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.
    For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
    (Pause here and silently recall the names of the sick for whom you are praying)
    Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
    Amen.

    Thank you so much and God
    Thank you so much and God bless you in your fight against this nasty illness.We live in new england and are currently being treated at mass general hospital
  • John23
    John23 Member Posts: 2,122 Member
    SarahD said:

    Thank you so much and God
    Thank you so much and God bless you in your fight against this nasty illness.We live in new england and are currently being treated at mass general hospital

    SarahD -
    If you live in Massachusetts, you should give UMass Medical Center
    in Worcester, Ma. a ring. They specialize in Cancer, and provided
    my mother with great treatments.

    UMass Memorial Medical Center in Worcester

    Good luck!

    John
  • bruins1971
    bruins1971 Member Posts: 227
    SarahD said:

    Thank you so much and God
    Thank you so much and God bless you in your fight against this nasty illness.We live in new england and are currently being treated at mass general hospital

    I am originally from Quincy
    I am originally from Quincy which is just south of Boston but after getting out of the Army I now live in Dallas. I will continue to pray that God will bless your father with a cure and keep the pain at a minimum.

    Bobby