Hi from the UK! 32 Year Old Liver and Lung Mets

concernedgal
concernedgal Member Posts: 33
edited March 2014 in Colorectal Cancer #1
Hi everyone

I'm from Scotland in the UK and have been reading this forum for this past week as my brother was diagnosed with bowel cancer which had spread to his liver and scan showed small tumor on lung.

We are worried sick as he is only 32 years old and his daughter will soon be turning 2 years old in April.

His oncologist is supposedly good but his attitude stinks! I understand he cant be positive all the time but not any words of encouragement have passed his lips.

I found out about a liver specialist in England who was happy to meet my brother but cant perform surgery as the liver tumors are scattered although if the chemo works and shrinks the tumors he said he could operate.

He started chemo on Thursday and is on oxaliplatin every 3 weeks for 2hrs and home with xeloda which is 8 tablets a day I think. He will find out next week if hes compatible for Erbitux.

Would be great to chat to people in a similar postion as the forums in the UK are all rather depressing with not many success stories.

Thanks
«13

Comments

  • ldot123
    ldot123 Member Posts: 272
    Try to stay positive
    Hello,
    Sorry to hear about your brother. You will find this site to be filled with many positive stories of survival - even stage 4 survivors! I have read about those in a similar situation sd your brother who end up doing remarkably well. I think doctors sometime do not want to commit to anything as far as good news since it is very hard to predict outcomes as far as cancer goes. Hang in there and keep on giving your brother support as I know you will. We are here to listen and help where we can.

    All the best, Lance
  • concernedgal
    concernedgal Member Posts: 33
    Thanks Lance
    Thank you for your reply.

    I know its hard but was thinking if we didnt find out about the liver specialist then he would have had no hope. Just gets a bit frustrating to think we have to do the research as the Doctors don't provide enough answers/solutions.

    Im quite concened about his weight as he is losing weight fast and can't afford to. Looking at Ensure Plus drinks to see if he could take them. Hes not eating junk as hes scared incase it makes the cancer worse and he also hasnt got much of an appetite due to his stomach pain
  • ldot123
    ldot123 Member Posts: 272

    Thanks Lance
    Thank you for your reply.

    I know its hard but was thinking if we didnt find out about the liver specialist then he would have had no hope. Just gets a bit frustrating to think we have to do the research as the Doctors don't provide enough answers/solutions.

    Im quite concened about his weight as he is losing weight fast and can't afford to. Looking at Ensure Plus drinks to see if he could take them. Hes not eating junk as hes scared incase it makes the cancer worse and he also hasnt got much of an appetite due to his stomach pain

    Be proactive
    If you are proactive and press for answers you should get them. Is there a hospital near you that specializes in cancer treatment? I would try to get a referral to go there if possible.

    Cheers, Lance
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hang in there!
    Hi Concernedgal (do you have a name we can call you by?),

    Welcome to our little virtual corner on the web! I'm glad you found us... and hope that although we talk about our various treatments here (in the US and in Canada), that they have similar versions in the UK. I'm sure treatments for cancer are pretty universal throughout most of the world.

    In Scotland, is it possible to change oncologists if your brother does not feel comfortable with the Dr. he has? I don't know if it's just me or not, but I feel a huge part of the successful healing is how you feel with the medical team you have... and the oncologist is the head of the team. This team basically has your life in their hands with what recommendations and decisions are made on your behalf. Yes, we all can say yes or no to those recommendations but in reality, we are not medical professionals so we have to have trust in our team that they are doing everything in their power to make us success stories.

    I know I have talked in the past of a doctor I had for one procedure who I had 100% confidence that he could do the job (procedure), but his attitude and mine were not the same. He was a bit of doom and gloom and kept reminding me that I was Stage IV (like I had forgotten???)... and the difference between his attitude and my oncologist's. Like night and day... and I DO go to my oncologist to get reassurance that we are on the right track.

    So, IF your brother does have the option of changing oncologists, or, as Lance said, if you are close to a hospital or facility that specializes in cancer treatments, it is well worth looking into. There is ALWAYS hope when it comes to cancer, no matter what stage one is diagnosed as... but it is a long road. I'm 2 years into my journey and have a ways to go ... but (other than the cancer) I'm healthy and active and back to my "taking on too many projects" so am busy around the clock . But the key, central person on my medical team is my oncologist... and it is imperative that the patient and their doctor is on the same page.

    Please stick around... ask whatever questions you are concerned about, no matter how big or small. And if your brother has access to a computer, tell him that we would be happy to have him join our merry band of survivors :) As a concerned sibling, you are more than welcome because you will be a survivor too... your brother may be the one who has the cancer, but it affects EVERYONE around him. And you all have to go through the journey too... so welcome aboard!! :)
  • concernedgal
    concernedgal Member Posts: 33

    Hang in there!
    Hi Concernedgal (do you have a name we can call you by?),

    Welcome to our little virtual corner on the web! I'm glad you found us... and hope that although we talk about our various treatments here (in the US and in Canada), that they have similar versions in the UK. I'm sure treatments for cancer are pretty universal throughout most of the world.

    In Scotland, is it possible to change oncologists if your brother does not feel comfortable with the Dr. he has? I don't know if it's just me or not, but I feel a huge part of the successful healing is how you feel with the medical team you have... and the oncologist is the head of the team. This team basically has your life in their hands with what recommendations and decisions are made on your behalf. Yes, we all can say yes or no to those recommendations but in reality, we are not medical professionals so we have to have trust in our team that they are doing everything in their power to make us success stories.

    I know I have talked in the past of a doctor I had for one procedure who I had 100% confidence that he could do the job (procedure), but his attitude and mine were not the same. He was a bit of doom and gloom and kept reminding me that I was Stage IV (like I had forgotten???)... and the difference between his attitude and my oncologist's. Like night and day... and I DO go to my oncologist to get reassurance that we are on the right track.

    So, IF your brother does have the option of changing oncologists, or, as Lance said, if you are close to a hospital or facility that specializes in cancer treatments, it is well worth looking into. There is ALWAYS hope when it comes to cancer, no matter what stage one is diagnosed as... but it is a long road. I'm 2 years into my journey and have a ways to go ... but (other than the cancer) I'm healthy and active and back to my "taking on too many projects" so am busy around the clock . But the key, central person on my medical team is my oncologist... and it is imperative that the patient and their doctor is on the same page.

    Please stick around... ask whatever questions you are concerned about, no matter how big or small. And if your brother has access to a computer, tell him that we would be happy to have him join our merry band of survivors :) As a concerned sibling, you are more than welcome because you will be a survivor too... your brother may be the one who has the cancer, but it affects EVERYONE around him. And you all have to go through the journey too... so welcome aboard!! :)

    Many thanks
    Thanks for the kind words! My name is Romana (not a typical Scottish name!)

    There is a specialised cancer hospital and my brothers oncologist works there but visits my brother at his private hospital.

    I mentioned to him to maybe get another oncologist with a better attitiude but hes so tired from the chemo he doesnt want to go through it all again.

    He was so positive and upbeat thinking the chemo wouldnt be as bad but its really knocked him out. Its more the pain side thats affecting him.

    I was under the impression chemo should help the pain but that and his painkillers have only gave him terrible constipation to the point he had to go to the hospital today for an enema which hasnt even helped. He doesnt sleep at night with the pain only in the morning when he can take the painkillers and they knock him out. He has to sleep sitting up which is horrible!
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Many thanks
    Thanks for the kind words! My name is Romana (not a typical Scottish name!)

    There is a specialised cancer hospital and my brothers oncologist works there but visits my brother at his private hospital.

    I mentioned to him to maybe get another oncologist with a better attitiude but hes so tired from the chemo he doesnt want to go through it all again.

    He was so positive and upbeat thinking the chemo wouldnt be as bad but its really knocked him out. Its more the pain side thats affecting him.

    I was under the impression chemo should help the pain but that and his painkillers have only gave him terrible constipation to the point he had to go to the hospital today for an enema which hasnt even helped. He doesnt sleep at night with the pain only in the morning when he can take the painkillers and they knock him out. He has to sleep sitting up which is horrible!

    Chemo and pain
    Hey Romana (what a pretty name!)

    Now, it's my understanding (and I could be wrong here) but chemo does not cause a particular pain. There are oodles of side affects that he could get from the chemo, especially that darn Oxalpilatin (nasty stuff) that can cause a severe sensitivity to anything cold as well as neuropathy (numbness, tingling) in his feet or hands. But I've never heard that it has caused pain per se.

    Now, I know I had a sharp pain in my left side before I was diagnosed... and had that pain for 6 months (I was whining about it but didn't really do too much about it since I kept thinking it would go away). When I was diagnosed, of course, they found a big old tumour in my sigmoid colon that had broken through the intestinal wall and formed an abscess around it, as well, I had perotonitis (infection of the abdomen) so that explained the pain. Needless to say, they threw me on a strong IV antibiotic to clean up the infection and then I had surgery to remove the tumour and 18 inches of colon. Once I had had that surgery and the antibiotic cleared up the infection, the pain was gone. I had to then have 8 months of chemo (12 sessions on the portable pump every two weeks and 2 months of oral chemo while on 6 weeks of daily radiation). None of that caused any actual pain other than it did aggravate some arthritis that I already had.

    Soooo, I guess my next question is... has he had surgery to remove the bowel cancer/tumour and have they checked for infection at all? If he hasn't had surgery for the bowel, are they planning on doing surgery??

    What has his oncologist said about the pain? My understanding (again, I could be wrong and it may be different from country to country) is that once cancer has been diagnosed and a treatment plan has been organized, there really is no reason anyone should suffer from side affects or pain. There are meds for every side affect... but since everyone reacts differently, no one med works for everyone. That is why it is imperative to let the oncologist know every little pain/discomfort/side affect you have so they can nip it in the bud. The fact your brother is in severe pain and has no appetite, then his oncologist should be doing something about this. If his pain meds are not doing the trick and are causing other side affects, then it's time to change the pain meds.

    All of this is just my opinion, and since I don't know his history or even what treatments he's had other than he's just started his chemo, don't take what I say verbatim. But definitely get the oncologist involved! Your brother can't be going through his treatment while he is in so much pain!

    Hugggggs,

    Cheryl
  • msccolon
    msccolon Member Posts: 1,917

    Chemo and pain
    Hey Romana (what a pretty name!)

    Now, it's my understanding (and I could be wrong here) but chemo does not cause a particular pain. There are oodles of side affects that he could get from the chemo, especially that darn Oxalpilatin (nasty stuff) that can cause a severe sensitivity to anything cold as well as neuropathy (numbness, tingling) in his feet or hands. But I've never heard that it has caused pain per se.

    Now, I know I had a sharp pain in my left side before I was diagnosed... and had that pain for 6 months (I was whining about it but didn't really do too much about it since I kept thinking it would go away). When I was diagnosed, of course, they found a big old tumour in my sigmoid colon that had broken through the intestinal wall and formed an abscess around it, as well, I had perotonitis (infection of the abdomen) so that explained the pain. Needless to say, they threw me on a strong IV antibiotic to clean up the infection and then I had surgery to remove the tumour and 18 inches of colon. Once I had had that surgery and the antibiotic cleared up the infection, the pain was gone. I had to then have 8 months of chemo (12 sessions on the portable pump every two weeks and 2 months of oral chemo while on 6 weeks of daily radiation). None of that caused any actual pain other than it did aggravate some arthritis that I already had.

    Soooo, I guess my next question is... has he had surgery to remove the bowel cancer/tumour and have they checked for infection at all? If he hasn't had surgery for the bowel, are they planning on doing surgery??

    What has his oncologist said about the pain? My understanding (again, I could be wrong and it may be different from country to country) is that once cancer has been diagnosed and a treatment plan has been organized, there really is no reason anyone should suffer from side affects or pain. There are meds for every side affect... but since everyone reacts differently, no one med works for everyone. That is why it is imperative to let the oncologist know every little pain/discomfort/side affect you have so they can nip it in the bud. The fact your brother is in severe pain and has no appetite, then his oncologist should be doing something about this. If his pain meds are not doing the trick and are causing other side affects, then it's time to change the pain meds.

    All of this is just my opinion, and since I don't know his history or even what treatments he's had other than he's just started his chemo, don't take what I say verbatim. But definitely get the oncologist involved! Your brother can't be going through his treatment while he is in so much pain!

    Hugggggs,

    Cheryl

    My thoughts as well
    Romana, what Cheryl has said is what I was thinking about your brother as well. I haven't read anywhere that a side effect of chemo is pain, although Avastin does cause me sharp pangs in my abdominal area, and I figure it's when it kills blood supply to something that's trying to grow where it's unwelcome! However, these pains are very temporary and they come pretty regularly on schedule the week after receiving Avastin. I would tend to believe constant pain is something that needs to be addressed; could be bleeding or an infection. I am so glad to see you are advocating for your brother when he's obviously in no condition to advocate for himself; he is blessed to have you! Definitely look into getting an oncologist who is a better fit for him; one who knows that cancer doesn't HAVE to be a death sentence! How is your brother supposed to win this battle if all his doctor has to say is that he's going to lose?!!! Perhaps you can do the hunt for him and even the consultation appointments he feels too weak to do himself!
    mary
  • concernedgal
    concernedgal Member Posts: 33
    msccolon said:

    My thoughts as well
    Romana, what Cheryl has said is what I was thinking about your brother as well. I haven't read anywhere that a side effect of chemo is pain, although Avastin does cause me sharp pangs in my abdominal area, and I figure it's when it kills blood supply to something that's trying to grow where it's unwelcome! However, these pains are very temporary and they come pretty regularly on schedule the week after receiving Avastin. I would tend to believe constant pain is something that needs to be addressed; could be bleeding or an infection. I am so glad to see you are advocating for your brother when he's obviously in no condition to advocate for himself; he is blessed to have you! Definitely look into getting an oncologist who is a better fit for him; one who knows that cancer doesn't HAVE to be a death sentence! How is your brother supposed to win this battle if all his doctor has to say is that he's going to lose?!!! Perhaps you can do the hunt for him and even the consultation appointments he feels too weak to do himself!
    mary

    Good advice Cheryl and Mary
    Well he had the pain before he started chemo and before he was diagnosed with cancer.

    Was a constant pain which spread round to his lower back. The Drs keep saying it doesnt seem to be related to the cancer but it must be as that was the only symptom he had, on top of this the pain killers gave him constipation which made it worse!

    He has had his painkillers changed and will see how he is tomorrow although he has a tendancy to play things down.

    The surgeon said the bowel cancer is "not cause for concern" at the moment. They wanted him started chemo right away for his liver as the bowel surgery could have delayed the chemo. Then we got the devastating news last Thursday that there was a tumor on his lung.

    Makes you wonder if your prayers are working as it seems to be bad news after bad news and really knocks your confidence. Im researching as much as I can as I hate seeing him in pain and he shouldnt have to suffer.

    It worries me that he may not have the strength anymore to carry on as he must be thinking is this what the next 6 months is going to be like?!

    Romana x
  • msccolon
    msccolon Member Posts: 1,917

    Good advice Cheryl and Mary
    Well he had the pain before he started chemo and before he was diagnosed with cancer.

    Was a constant pain which spread round to his lower back. The Drs keep saying it doesnt seem to be related to the cancer but it must be as that was the only symptom he had, on top of this the pain killers gave him constipation which made it worse!

    He has had his painkillers changed and will see how he is tomorrow although he has a tendancy to play things down.

    The surgeon said the bowel cancer is "not cause for concern" at the moment. They wanted him started chemo right away for his liver as the bowel surgery could have delayed the chemo. Then we got the devastating news last Thursday that there was a tumor on his lung.

    Makes you wonder if your prayers are working as it seems to be bad news after bad news and really knocks your confidence. Im researching as much as I can as I hate seeing him in pain and he shouldnt have to suffer.

    It worries me that he may not have the strength anymore to carry on as he must be thinking is this what the next 6 months is going to be like?!

    Romana x

    do prayers work?
    I know it is hard when you don't get the answer that you are hoping for, at least it doesn't SOUND like the answer you are hoping for! I know when I am dealing with a recurrence I wonder why I can't be the one who can say it's been 5 years of NED? I always do come to the realization, eventually, that I am a living miracle. The fact that I am still alive today, and that I have the love of my daughters and my family is a miracle, indeed! Sometimes the path is rough, but God gives me the strength I need when I need it and that's enough! I have been greatly blessed over the 48 years I have been on this earth, and I certainly don't deserve even 1/2 of what I have received! I am able to look back on my life and see the many angels who I have met along the way and the many wonderful experiences I have been able to enjoy! Sure, there have been some really hard times, and there will undoubtedly be more in the future, but the rainbow always comes after the storm. On Sunday I was talking with some ladies in my Sunday School class about the surgery I will be having in May. Their response was that they are amazed that I can be so happy through the things I have experienced. The obvious response to that is two-fold. First, come see me on the days when I am on chemo and feeling like crap, I'm not so happy! But, the second part of my response is even more obvious; I have 2 choices on how I can deal with this beast. I can be determined to live and ENJOY my life the best that I can, and to continue this fight as long as I can, or I can give up and whine about the lot I have been given. I've never been much of a whiner, although I do have my days! Jesus gave His life on the cross for my sins, and I owe Him nothing less in return!
    Just my thoughts.
    mary
  • concernedgal
    concernedgal Member Posts: 33
    msccolon said:

    do prayers work?
    I know it is hard when you don't get the answer that you are hoping for, at least it doesn't SOUND like the answer you are hoping for! I know when I am dealing with a recurrence I wonder why I can't be the one who can say it's been 5 years of NED? I always do come to the realization, eventually, that I am a living miracle. The fact that I am still alive today, and that I have the love of my daughters and my family is a miracle, indeed! Sometimes the path is rough, but God gives me the strength I need when I need it and that's enough! I have been greatly blessed over the 48 years I have been on this earth, and I certainly don't deserve even 1/2 of what I have received! I am able to look back on my life and see the many angels who I have met along the way and the many wonderful experiences I have been able to enjoy! Sure, there have been some really hard times, and there will undoubtedly be more in the future, but the rainbow always comes after the storm. On Sunday I was talking with some ladies in my Sunday School class about the surgery I will be having in May. Their response was that they are amazed that I can be so happy through the things I have experienced. The obvious response to that is two-fold. First, come see me on the days when I am on chemo and feeling like crap, I'm not so happy! But, the second part of my response is even more obvious; I have 2 choices on how I can deal with this beast. I can be determined to live and ENJOY my life the best that I can, and to continue this fight as long as I can, or I can give up and whine about the lot I have been given. I've never been much of a whiner, although I do have my days! Jesus gave His life on the cross for my sins, and I owe Him nothing less in return!
    Just my thoughts.
    mary

    So strong
    You sounds like such a strong and determined person, I really admire you.

    Some people (like myself) would give up and feel sorry for themselves but you are a fighter and thats what I like to hear.

    Just hope one day they find a cure for this awful disease!
  • msccolon
    msccolon Member Posts: 1,917

    So strong
    You sounds like such a strong and determined person, I really admire you.

    Some people (like myself) would give up and feel sorry for themselves but you are a fighter and thats what I like to hear.

    Just hope one day they find a cure for this awful disease!

    no stronger than anybody else!
    You do what you have to do because it has to be done! Period! I am positive you would surprise yourself as to just how strong you are as well! And I agree, one of these days there will be a cure and we will all be able to celebrate!
    mary
  • fez1
    fez1 Member Posts: 47
    msccolon said:

    no stronger than anybody else!
    You do what you have to do because it has to be done! Period! I am positive you would surprise yourself as to just how strong you are as well! And I agree, one of these days there will be a cure and we will all be able to celebrate!
    mary

    he needs you to be his advocate
    Romana- My name is Carol and my husband is the one with Stage IV colon cancer. I know exactly what you mean about your brother not having the physical or emotional strength to look into an new treatment or new physician etc. My husband, too would say, "Carol does that". When he was first diagnosed he was so shocked and overwhelmed with his diagnosis, surgery, treatments etc. I am a nurse and it came naturally to me to discuss things with his doctors. On top of that he worried about our financial situation, our children's futures etc. All the while I took on the advocate role. I do all of the research, phone calls, appointments etc. Does he have a wife whom you could talk with and help with this process? I agree totally with everyone about a new oncologist. I would start with a major cancer center near where he lives, one that can offer him a team approach. Can you ask the surgeon if he would recommend an oncologist? Romana, he is lucky to have you for a sister. As apathetic as he may seem, believe me, he needs your input, support and love. He needs someone like you to take this burden from him. Stay connected to this list. Although we are in the U.S. you'll get good advice and invaluable support. Take care.

    Carol
  • concernedgal
    concernedgal Member Posts: 33
    fez1 said:

    he needs you to be his advocate
    Romana- My name is Carol and my husband is the one with Stage IV colon cancer. I know exactly what you mean about your brother not having the physical or emotional strength to look into an new treatment or new physician etc. My husband, too would say, "Carol does that". When he was first diagnosed he was so shocked and overwhelmed with his diagnosis, surgery, treatments etc. I am a nurse and it came naturally to me to discuss things with his doctors. On top of that he worried about our financial situation, our children's futures etc. All the while I took on the advocate role. I do all of the research, phone calls, appointments etc. Does he have a wife whom you could talk with and help with this process? I agree totally with everyone about a new oncologist. I would start with a major cancer center near where he lives, one that can offer him a team approach. Can you ask the surgeon if he would recommend an oncologist? Romana, he is lucky to have you for a sister. As apathetic as he may seem, believe me, he needs your input, support and love. He needs someone like you to take this burden from him. Stay connected to this list. Although we are in the U.S. you'll get good advice and invaluable support. Take care.

    Carol

    Thanks Carol
    Thank you for your post Carol.

    He lives with his girlfriend and there 2 year old girl. She has been great, looking after my brother, their girl and working.

    Ive never been to any of his appointments as he goes with his girlfriend and our dad so dont want to interfere but I might ask if I can come the next time so I can see for myself what the oncologist is like.

    The surgeon who will be dealing with the bowel tumor recommened his oncologist said hes the best in scotland in his opinion but his bedside manner is disgraceful. Its my brothers life we're discussing and I hate how the base everything on statistics and they cant commit to anything positive incase we sue!

    This site really is great, so many great positive people and makes a change from some depressing stories in Britain

    Romana
  • snommintj
    snommintj Member Posts: 601

    Thanks Carol
    Thank you for your post Carol.

    He lives with his girlfriend and there 2 year old girl. She has been great, looking after my brother, their girl and working.

    Ive never been to any of his appointments as he goes with his girlfriend and our dad so dont want to interfere but I might ask if I can come the next time so I can see for myself what the oncologist is like.

    The surgeon who will be dealing with the bowel tumor recommened his oncologist said hes the best in scotland in his opinion but his bedside manner is disgraceful. Its my brothers life we're discussing and I hate how the base everything on statistics and they cant commit to anything positive incase we sue!

    This site really is great, so many great positive people and makes a change from some depressing stories in Britain

    Romana

    A little help
    Hello,
    My name is John, I'm 35, both of my grandfathers immigrated from Scotland. I was diagnosed stage 4 CRC w/mets to liver, gall bladder, plus others. My son was 18 months old when I was diagnosed march 14th 2008. My original diagnosis was bleak, just 2-3 months. I felt it was an odd diagnosis since I was symptom free and had only gone to the doctor for an ulcer. Unfortunately the ulcer was being caused by a very large tumor in the upper right sigmoid colon. More on this later. I think I can help your brother a bit.

    1. I had almost unbearable pain from an ulcer caused by my tumor. The pain seemed to come from everywhere and nothing helped with the pain. The doctors couldn't pinpoint where the pain was coming from because I couldn't. I went to my sisters house for dinner and got wicked heartburn, they didn't have anything but her husbands aciphex, I took one, it eased both my heartburn and my other constant pain. I asked my doctor for a small prescription and within two weeks my pain was gone, ulcer was healed, I stopped the aciphex. Avastin sometimes causes perforation in your abdominal wall, maybe an acid inhibitor will help.

    2. If your not juicing, START!. Everyone I've shared this with has improved their situation, sometimes dramatically. Twice daily.
    a piece of fresh ginger about the size of your thumb, and according to size 2-3 lemons, 1-2 apples, 2 carrots, 1 beet. This usually make about 20 oz of juice. You will see dramatic results on his next round of blood tests. All of his counts will improve. Don't leave anything out especially not the lemons, the lemons and the ginger are the most important, the other fruits are mostly for flavor.

    3. If you brother is having a hard time going, use Colace. It's basically just a gel packed mineral oil. I was taking 3 tablets, 3 times daily. These along with the juice will speed things up and relieve internal pressure that will help with pain.

    4. Don't worry about your doctors bedside manner. Just worry about whether he is giving you the best chance possible. Your brother needs to know he is in the fight of his life. He doesn't need everyone telling him he's gonna be fine and everything is alright. I can't tell you how many people who have no idea what we're going through off handedly comment how wonderful everything is gonna be. The truth is, if we don't step up we're toast.
    5. I didn't qualify for any surgery at first. The doctors said I needed a miraculous response to chemo in order for a surgeon to look at my liver. I had my 1st liver resection july 1st 2008. The cancer recurred and I had a 2nd resection jan13. So just because he can't have surgery now doesn't mean he can't have it later. Find a good surgeon, and interventional radiologist. Perhaps he can get some RFA. I had 2 tumors ablated that weren't removable.
    I'm currently in my bed with a J-P drain hanging from my liver. I developed an infection after my last surgery, it hasn't let up. Hopefully things will be cleared up by my anniversary. Because, when the infection is gone my doctors say there isn't any evidence of cancer anywhere, which from where I started a year ago is almost unheard of. Tell your brother good luck. There is hope. He's gonna have the go through hell but it can be done.
  • concernedgal
    concernedgal Member Posts: 33
    snommintj said:

    A little help
    Hello,
    My name is John, I'm 35, both of my grandfathers immigrated from Scotland. I was diagnosed stage 4 CRC w/mets to liver, gall bladder, plus others. My son was 18 months old when I was diagnosed march 14th 2008. My original diagnosis was bleak, just 2-3 months. I felt it was an odd diagnosis since I was symptom free and had only gone to the doctor for an ulcer. Unfortunately the ulcer was being caused by a very large tumor in the upper right sigmoid colon. More on this later. I think I can help your brother a bit.

    1. I had almost unbearable pain from an ulcer caused by my tumor. The pain seemed to come from everywhere and nothing helped with the pain. The doctors couldn't pinpoint where the pain was coming from because I couldn't. I went to my sisters house for dinner and got wicked heartburn, they didn't have anything but her husbands aciphex, I took one, it eased both my heartburn and my other constant pain. I asked my doctor for a small prescription and within two weeks my pain was gone, ulcer was healed, I stopped the aciphex. Avastin sometimes causes perforation in your abdominal wall, maybe an acid inhibitor will help.

    2. If your not juicing, START!. Everyone I've shared this with has improved their situation, sometimes dramatically. Twice daily.
    a piece of fresh ginger about the size of your thumb, and according to size 2-3 lemons, 1-2 apples, 2 carrots, 1 beet. This usually make about 20 oz of juice. You will see dramatic results on his next round of blood tests. All of his counts will improve. Don't leave anything out especially not the lemons, the lemons and the ginger are the most important, the other fruits are mostly for flavor.

    3. If you brother is having a hard time going, use Colace. It's basically just a gel packed mineral oil. I was taking 3 tablets, 3 times daily. These along with the juice will speed things up and relieve internal pressure that will help with pain.

    4. Don't worry about your doctors bedside manner. Just worry about whether he is giving you the best chance possible. Your brother needs to know he is in the fight of his life. He doesn't need everyone telling him he's gonna be fine and everything is alright. I can't tell you how many people who have no idea what we're going through off handedly comment how wonderful everything is gonna be. The truth is, if we don't step up we're toast.
    5. I didn't qualify for any surgery at first. The doctors said I needed a miraculous response to chemo in order for a surgeon to look at my liver. I had my 1st liver resection july 1st 2008. The cancer recurred and I had a 2nd resection jan13. So just because he can't have surgery now doesn't mean he can't have it later. Find a good surgeon, and interventional radiologist. Perhaps he can get some RFA. I had 2 tumors ablated that weren't removable.
    I'm currently in my bed with a J-P drain hanging from my liver. I developed an infection after my last surgery, it hasn't let up. Hopefully things will be cleared up by my anniversary. Because, when the infection is gone my doctors say there isn't any evidence of cancer anywhere, which from where I started a year ago is almost unheard of. Tell your brother good luck. There is hope. He's gonna have the go through hell but it can be done.

    Thanks for the Tips
    Hi John

    Thanks so much for the tips. I will print this off and give it to my brothers girlfriend so she can make the drink. Funnily enough someone bought him a juicer last week!

    I'm so pleased to hear how well your doing (obviously apart from the infection) I wish you a speedy recovery from this. You deserve it.

    Can I ask what chemotherapy you had?

    Romana
  • snommintj
    snommintj Member Posts: 601

    Thanks for the Tips
    Hi John

    Thanks so much for the tips. I will print this off and give it to my brothers girlfriend so she can make the drink. Funnily enough someone bought him a juicer last week!

    I'm so pleased to hear how well your doing (obviously apart from the infection) I wish you a speedy recovery from this. You deserve it.

    Can I ask what chemotherapy you had?

    Romana

    chemo
    My first six rounds were folfox 6 w/avastin, after my initial surgery I had to have an iliostomy bag for 6 weeks. When that was removed the wound didn't heal in time to start the same regimen of chemo, so I started folfiri without avastin. Once the wound healed I went back on avastin, during this time a single tumor appeared in my liver and progressed quite rapidly. I was switched back to folfox 6 w/avastin for 3 cycles. Even though I only had 3 cycles, the folfox regimen put the smackdown on the tumor, stopped it from progressing and shrunk it a bit. One word of caution, 5FU is a nasty, nasty poison. It will destroy your liver. When he has his liver surgery, make sure he asks his surgeon what the condition of his liver is. The surgeon and the oncologist need to be working together so the oncologist doesn't
    fry his liver. I'm sure the oncologist is doing tests to monitor his liver function but that isn't the whole story. A visual inspection of the liver, noting color and texture is more important than the blood tests. On paper my liver functions like a champ, but both my surgeon and oncologist agree I can't have anymore chemo for at least a year.

    Oxaliplatin- Some of the most odd side effects happen with this. I experienced peripheral neuropathy, sensitivity to cold, and a shooting shock sensation through my whole body(only 3-5 times). This stuff stays in your body a long time, 2 years isn't unheard of.

    leucovorin- Is just a bunch of hopped up vitamins.

    Camptosar- This is used in folfiri, is just a lab version of the naturally occurring substance Camptothesin, the drug company alters it a bit when they synthesize it so they can patent it and charge big bucks. This works for some, not me; and gave me the worst stomach cramps, basically made me bed ridden for 4-5 days. Do your own research but if you check all the literature you'll find that if it doesn't work in the first 1-2 cycles it's probably not going to work, that is a high probability. You either respond or not. MY ONCOLOGIST DIDN'T KNOW THIS, I HAD TO SHOW HIM. I know a girl who spent 12 cycles on this, they just kept hoping it would work.
    When I showed her, she almost lost here mind. She switched to folfox and had some positive results but had to stop for liver reasons. She's hoping to restart this year.

    Avastin- This stops new blood vessels from forming, this is an attempt to starve tumors. I guess it works. This is the drug that will affect when you can have surgery. No surgery within 5-6 weeks of your last dose. Also no avastin within 6 weeks after surgery. It will prevent healing.

    Plus here are some things I would love to try if they were permitted by the FDA in my country. You may have access to these in your country, bottom line is they work and are cheap.

    DCA- dichloracetate, basically vinegar with two substituted chlorines, they're studying it in canada and it can be bought over the internet, but they won't ship it to the US. I know 4 people who have taken this and it significantly help them, I won't say cure but close.
    It works by restarting the mitochondria in the cell which will eventually lead to apoptosis, a cells programmed death. You can get a prescription in this country for this drug if you have lactic acidosis. DCA neutralizes high levels of lactic acid in the blood, but the FDA issued a memo to all oncologists telling them if they prescribed it to any cancer patients they would prosecute them. I saw the memo. It absolutely sucks that there is a drug I can take for less than $1 per day that can save my life and I can't get it anywhere. Trust me I've tried

    Avemar- A wheat extract, I know about 25-30 cancer patients that take it and every one has had a positive effect. You can probably get this.

    Tetrathiomolybdate- Given to people with high copper concentrations. It can also cause a copper deficiency. Copper is needed in the growth of new blood vessels. Becoming copper deficient is the same as taking avastin, in the future I'm sure we'll be getting both during treatment. The University of Michigan has all kinds of research on this and it's available online.
  • lisa42
    lisa42 Member Posts: 3,625
    Hi Romana,
    I've just read

    Hi Romana,

    I've just read all the other responses people gave you. I'm sorry to hear about your brother- I read a recent article that, in spite of the fact that the standard screening age recommendation for colorectal (bowel) cancer is age 50, more and more doctors are reporting an alarming increase in the number of patients being diagnosed at a much younger age recently. I believe the article said the major increase was in the rectal area, not higher up in the colon, though.

    I would like to say "ditto" to so many of the words of advice from others given here already. I am a stage IV patient who was diagnosed a year and a half ago at age 40- not as young as your brother, but still a decade younger than the "recommended screening age of 50".
    At first, I was not considered a surgical candidate either because, in addition to the rectal tumor that had grown through my bowel wall, I had numerous tumors throughout my liver and both lungs. I was also told that the rectal tumor was not a priority- they were more concerned about the liver/lungs. My doctor, fortunately, had a very postive demeanor with me. When my husband asked, he did tell him that had I not come in for diagnosis/treatment when I did, that I would have only lasted 4-5 more months. He never told me that, though & my husband kept that info from me for a long time. I told my onc up front that I had already read the internet statistics, knew they were bad, and that I needed to hear encouraging words and success/miracle stories in order for to have the right attitude to fight this. He told me not to believe the statistics I read, because statistics are always at least 5 years old and they're based on patients who were diagnosed and treated at least 5 years ago (which was before they came out with Avastin and some of the newer chemo regimens). He said that things are getting better and better here & that even though I was considered to not currently be a surgical candidate, that we were going to go "for cure" here. I know that my fighting attitude wouldn't have been nearly as good if he had been a downer with more pessimistic news.
    So- my story up to date since that time is that I went through 6 months of Folfox and Avastin and had a very good response to the chemo. I went from 12+ liver tumors down to 3 and most of the stuff in my lungs shrunk a lot gone. My oncologist then decided to focus on my original rectal tumor, so I then went through 6 weeks of radiation and chemo to focus on it. Early on, I asked my radiologist, "If my rectal tumor disappears during radiation will I still need surgery there?" She looked at me kind of funny and said "We're not expecting the rectal tumor to disappear- remember it's just to slightly shrink and soften it in preparation for an easier surgery". Well, guess what? I was one of the lucky ones (and I believe God answered prayers)- my rectal tumor shrunk completely away with no sign of any cancer showing up on the biopsies pathology following the check I got about 4 weeks after finishing radiation. I never did have the bowel/rectal surgery, but they are watching it carefully- that was a year ago (mid March)and no recurrence in the bowel, as of yet anyhow!
    After that, we addressed my liver & I was then considered a surgical candidate. I ended up having a liver resection (45% of liver was removed) this past May. I didn't get to have the laporoscopic surgery because the tumors were deep, so I have a lovely 8 inch curved scar from it. I recovered fairly well with no complications from the surgery.

    That was May. On my first follow up CT scan in August, I unfortunately showed that my lungs were having some intense regrowth of tumors, so I had to start on chemo again for that. It was in both lungs again- everything was under a centimeter, but was widespread, so no radiation or other treatments were considered at the time. I had another scan the day before Thanksgiving in November & about half had shrunk and half had "stayed stable". That's better than growing, but wasn't good enough for me. I have one more chemo treatment in two more weeks & will then get scanned again (4 months since last scan). I hope and pray the crap in my lungs is gone this time! If not, I keep reading about the latest in research and feel encouraged that there's still more they could do for me.

    There's a great website to subscribe to the newsletter of that gives all the latest on colorectal cancer advances. I believe it's 3C (Cancer Coalition "something"). I'll look it up as soon as I close here and post what it is- it really is worth getting the newsletter or at least check out the website. I've gotten lots of info from that site that I've printed out and taken into my oncologist- a lot of info that he wasn't aware of. Unfortunately, you really have to be your own advocate and I've discovered you can't just sit back and expect your doctor to inform you of everything that can be done. Some doctors are too "old school" and don't stay on top of things as much. By the way, if your brother doesn't actually change oncologists, perhaps there's another specialized oncologist that he could at least consult with. My insurance authorized me to see another highly touted oncologist at a nearby Cancer Center, but then wouldn't allow me to actually to change over to him for my care. Fortunately, this other kind doctor has agreed to be available to me by phone or email to answer questions that I may have. I have run a few things by him right before going in to see my own oncologist the last two times (also to see if he concurred w/ the type of chemo and treatment my oncologist was putting me on). It was very helpful.

    Best wishes to you and your brother.
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625
    C3: Colorectal Cancer Coalition
    Hi again,

    I just looked up the website that I told you I would. It's "C3: Colorectal Cancer Coalition"
    www.fightcolorectalcancer.org

    Definitely check it out. Then, if you want to, you can subscribe to their monthly e-newsletter. I really, really find it helpful & never consider it a "spam" in my email inbox.

    Take care,
    Lisa
  • CherylHutch
    CherylHutch Member Posts: 1,375
    snommintj said:

    chemo
    My first six rounds were folfox 6 w/avastin, after my initial surgery I had to have an iliostomy bag for 6 weeks. When that was removed the wound didn't heal in time to start the same regimen of chemo, so I started folfiri without avastin. Once the wound healed I went back on avastin, during this time a single tumor appeared in my liver and progressed quite rapidly. I was switched back to folfox 6 w/avastin for 3 cycles. Even though I only had 3 cycles, the folfox regimen put the smackdown on the tumor, stopped it from progressing and shrunk it a bit. One word of caution, 5FU is a nasty, nasty poison. It will destroy your liver. When he has his liver surgery, make sure he asks his surgeon what the condition of his liver is. The surgeon and the oncologist need to be working together so the oncologist doesn't
    fry his liver. I'm sure the oncologist is doing tests to monitor his liver function but that isn't the whole story. A visual inspection of the liver, noting color and texture is more important than the blood tests. On paper my liver functions like a champ, but both my surgeon and oncologist agree I can't have anymore chemo for at least a year.

    Oxaliplatin- Some of the most odd side effects happen with this. I experienced peripheral neuropathy, sensitivity to cold, and a shooting shock sensation through my whole body(only 3-5 times). This stuff stays in your body a long time, 2 years isn't unheard of.

    leucovorin- Is just a bunch of hopped up vitamins.

    Camptosar- This is used in folfiri, is just a lab version of the naturally occurring substance Camptothesin, the drug company alters it a bit when they synthesize it so they can patent it and charge big bucks. This works for some, not me; and gave me the worst stomach cramps, basically made me bed ridden for 4-5 days. Do your own research but if you check all the literature you'll find that if it doesn't work in the first 1-2 cycles it's probably not going to work, that is a high probability. You either respond or not. MY ONCOLOGIST DIDN'T KNOW THIS, I HAD TO SHOW HIM. I know a girl who spent 12 cycles on this, they just kept hoping it would work.
    When I showed her, she almost lost here mind. She switched to folfox and had some positive results but had to stop for liver reasons. She's hoping to restart this year.

    Avastin- This stops new blood vessels from forming, this is an attempt to starve tumors. I guess it works. This is the drug that will affect when you can have surgery. No surgery within 5-6 weeks of your last dose. Also no avastin within 6 weeks after surgery. It will prevent healing.

    Plus here are some things I would love to try if they were permitted by the FDA in my country. You may have access to these in your country, bottom line is they work and are cheap.

    DCA- dichloracetate, basically vinegar with two substituted chlorines, they're studying it in canada and it can be bought over the internet, but they won't ship it to the US. I know 4 people who have taken this and it significantly help them, I won't say cure but close.
    It works by restarting the mitochondria in the cell which will eventually lead to apoptosis, a cells programmed death. You can get a prescription in this country for this drug if you have lactic acidosis. DCA neutralizes high levels of lactic acid in the blood, but the FDA issued a memo to all oncologists telling them if they prescribed it to any cancer patients they would prosecute them. I saw the memo. It absolutely sucks that there is a drug I can take for less than $1 per day that can save my life and I can't get it anywhere. Trust me I've tried

    Avemar- A wheat extract, I know about 25-30 cancer patients that take it and every one has had a positive effect. You can probably get this.

    Tetrathiomolybdate- Given to people with high copper concentrations. It can also cause a copper deficiency. Copper is needed in the growth of new blood vessels. Becoming copper deficient is the same as taking avastin, in the future I'm sure we'll be getting both during treatment. The University of Michigan has all kinds of research on this and it's available online.

    Thanks
    Thanks for the information that you listed here. I found a lot of it to be very interesting, especially about the 5FU and the liver. I realize that when we are prescribed these toxic drugs (chemo), or even radiation which is not a drug, the oncologists/medical profession to weigh the risks vs the benefits and if the benefits seem to be higher, you have the choice to go with them or not. Even if the benefits do seem higher, there's always the risk that you are going to be hit with the risks. Life is definitely a gamble in that sense.

    I'm not sure if 5FU is dangerous for a liver already compromised with tumours, or if all livers are at risk. Lucky for me, I was on the 5FU for 8 months and it didn't affect my liver at all (that's not to say it won't have some side affect down the road).

    Now, I do have to say something about dichloracetate (DCA), as a Canadian. It is NOT legal up here and whereas your FDA does not approve of it at all (there have been no clinical trials done on humans), neither does Canada Health. There are quacks up here in Canada just as there are anywhere else in the world... and if someone thinks they can make bucks off of desperate people, then there are those who have no conscience and will.

    Here is a very interesting (longish) article that is well worth reading before trying to run out and get your hands on DCA. I remember a couple of years back that there was an article written in one of the medical journals and it just caught on like wildfire! And why not?? When you are fighting for your life and you think someone has created or found a magic pill that might save you, of course you are going to go to the ends of the earth to get it. But the article did not say that... yet that was how it was interpreted. NO clinical trials had been done, so no proof that this would work on humans. And to this day, I can't find anywhere that there are legitimate clinical trials going on for this DCA. I find THAT very interesting too because for something so promising, WHY hasn't it gone into clinical trials here in Canada and the USA?

    Anywho... for those who are interested, you might want to check out this article:

    http://scienceblogs.com/insolence/2007/05/a_family_practitioner_and_epidemiologist.php

    Hugggggs,

    Cheryl

    PS: Please don't take this as me bashing DCA... if it ever were to go to clinical trial, I might be the first to sign up for it as a guinea pig. I just don't want anyone to get really excited that there is something out there and then be furious with your FDA because they haven't approved it yet. Canada Health (our equivalent of the FDA) hasn't either for what it's worth.
  • concernedgal
    concernedgal Member Posts: 33
    lisa42 said:

    C3: Colorectal Cancer Coalition
    Hi again,

    I just looked up the website that I told you I would. It's "C3: Colorectal Cancer Coalition"
    www.fightcolorectalcancer.org

    Definitely check it out. Then, if you want to, you can subscribe to their monthly e-newsletter. I really, really find it helpful & never consider it a "spam" in my email inbox.

    Take care,
    Lisa

    Wow
    Thank you for all the info everyone, it really is appreciated.

    Lisa, your story is amazing!! Where your liver tumors "scattered" then? Please let me know how you get on with your next scan. I will be praying for you.

    I've been having a bad few days and starting to feel more down about it all. Im going to the Doctors on Friday about it as Ive been getting chest pains for 2 weeks which is probably stress related.

    Also when I read about the statistics and it says 5 year survivial rate after surgery it scares the hell out of me. I've been trying not to google so much but its hard as I feel helpless at the moment x