CancerCompass message board discussion started by Dennis1 on 7/1/2008 http://www.cancercompass.com/message-board/message/all,25607,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My twin sister was diagnosised with metastatic small-cell-lung cancer back in Sept.06,that had went to her brain.She's went thru 7 months of chemo (cisplatin),10 whole head radiation therapies.Her lung tumor has been in remission for 1 year now,very happy about that,but her brain tumor has come back 3 times now.She's undergone 3 gamma knife radiation therapies on her brain, not good.The problem is the blood brain barrier keeps anything from getting to brain to help kill any active cancer cells.I do have her taking AHCC,which I do know thru my research helps with her immune system,helping with her NATURAL KILLER CELLS and T-CELLS to attack any active cancer cells and destroy them,I'm hoping.I also have her taking Polymva, which I've read thru there website gets thru the blood brain barrier,I'm hoping and praying that these complimentary,alternative supplements can help in anyway.Please contact me with any feedback with AHCC or Polymva or anything else that might possibly help.Please contact me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--Thank you so very much, Dennis          Dennis1 Tue, 01 Jul 2008 00:00:00 GMT Dennis, Sorry I cannot help with your questions but I am interested in you and your sister's experiences.My wife had 5 metastatic tumors removed in early 07.  One surgically, the others with Gamma Knife, then 30 days of whole brain radiation.  You mentioned your sister has had several Gamma Knife operations and several whole brain radiation treatments.I have read as long as the primary lung cancer is controlled the mets can be treated almost indefinitely.  I have heard all kinds of horror stories about the side effects of too much brain radiation.  What are the effects, if any, of the multiple brain radiation treatments your sister has had?  Keep up the good fight and keep sharing.My wife's cancer is a CUP.  Percentages say it will be found to be NSC Lung Cancer.  Until then, there is no chemo, nothing - because there is nothing to treat except brain mets. Thank you.  Michael ohimick Sat, 05 Jul 2008 00:00:00 GMT  On 7/5/2008 ohimick wrote:Dennis, Sorry I cannot help with your questions but I am interested in you and your sister's experiences.My wife had 5 metastatic tumors removed in early 07.  One surgically, the others with Gamma Knife, then 30 days of whole brain radiation.  You mentioned your sister has had several Gamma Knife operations and several whole brain radiation treatments.I have read as long as the primary lung cancer is controlled the mets can be treated almost indefinitely.  I have heard all kinds of horror stories about the side effects of too much brain radiation.  What are the effects, if any, of the multiple brain radiation treatments your sister has had?  Keep up the good fight and keep sharing.My wife's cancer is a CUP.  Percentages say it will be found to be NSC Lung Cancer.  Until then, there is no chemo, nothing - because there is nothing to treat except brain mets. Thank you.  Michael  Michael,thank you for your reply to my twin sister's SCLC.My apology for not replying sooner,I've been with my sister for the last 10 days.I'm alittle confused,does your wife have NSCLC that had metastasized to her brain?I'm vary happy with your statement that as long as the primary lung cancer is not showing sings of active cancer cells or new tumors that the metastatic brain tumor can be treated indefinitely.If you could get back to me were you read this, I'd appreciate it.The problem is the horror stories connected to whole head radiation and gamma knife radiation.Granted there therapies have killed off the cancerous tumors,but has left another set of problems.Once the tumor has been radiated to death,tumor necrosis is the new problem.Necrosis is the dead tumor tissue,that then creates brain edema,which is the swelling around the dead tumor.The radiologist then has to perscribe steroids to keep the edema down.The new set of problems now that has arised are affecting her left side of her body.Her left eye is starting to lose sight,her left hand doesn't work anymore,it just hangs limp at her side,her left side of her mouth drups,so her speech is affected,her left leg is not working properly now,so she has a problem walking,she's fallen down several times now.The steroids are bad for the human body,but they are also bad for the bone density of the bones,they've perscribed her a calcium medication now for that.Steroids keep her face puffy.She also has to take 6 seizure pills daily,to keep her from having a seizure,from the swelling in the brain.The problem with the onocologist and the radiologist is,there's not much they know about tumor necrosis.There answer to necrosis is steroids,to keep the swelling down in the brain.They don't deal with this degree of tumor necrosis that my sister has vary often.The cancer usually kills the patient befor they have this major problem with necrosis.I've researched this necrosis problem and have found studies that states warfin,a blood thinner,and oxygen hyperberic chamber separetly or in combination help with tumor necrosis.I printed out a copy of the study and presented to the onocologist,and of course they really don't want to be told anything that you bring to them for something that might possibly work that there not suggesting.He stated he would read this 14 page study,I've yet to talk to him about what he thought of it,and the possiblity to my sister's tumor necrosis.The words I want cancer patients and there families to understand are yes,if your doctors state you need chemo,radiation or surgery,do it.It has kept my sister alive now for almost 2 years now,and SCLC is one of the fastest growing and moving cancers known.The problem is,there's a higher percentage of people that get NON-SMALL-CELL LUNG CANCER than SMALL-CELL LUNG CANCER,thus there's more research and studies done on NSCLC than on SCLC.My words to you and all cancer patients and there families,don't just wait and hope and pray and believe that everything is going to be alright and that you should not do anything more than chemo,radiation,and surgery that your onocologist recommends.These specialist have been trained in one thing only and that is what the MEDICAL ASSOCIATION and the BIG PHAMA INDUSTRY have taught them.Don't wait,research COMPLIMENTERY and ALTERNATIVE WAYS.There are hundreds of possible products that help with certain types of cancer,take a chance,choose one or two,and start taking them.Like I've stated,I have my twin sister on AHCC and POLYMVA,you've got one shot at making a difference in a loved ones life,and doing nothing but believing in your specialist in a wait and see,is not the answer.It wasn't the answer back in the 60's,when I remember my aunt's,uncle's,and friends of my family dying of this horrible disease.Granted, cancer research has come along alittle,but to my amazement,50 years later,they really haven't come along anough.To believe and hope that specialist has all the answers,is not the only way.Be proactive,don't wait,time is vary important when a loved one is diagnosed with cancer.    My prayers are with all, Dennis              P.S. To all,please reply, words help             Dennis1 Sun, 13 Jul 2008 00:00:00 GMT  On 7/5/2008 ohimick wrote:Dennis, Sorry I cannot help with your questions but I am interested in you and your sister's experiences.My wife had 5 metastatic tumors removed in early 07.  One surgically, the others with Gamma Knife, then 30 days of whole brain radiation.  You mentioned your sister has had several Gamma Knife operations and several whole brain radiation treatments.I have read as long as the primary lung cancer is controlled the mets can be treated almost indefinitely.  I have heard all kinds of horror stories about the side effects of too much brain radiation.  What are the effects, if any, of the multiple brain radiation treatments your sister has had?  Keep up the good fight and keep sharing.My wife's cancer is a CUP.  Percentages say it will be found to be NSC Lung Cancer.  Until then, there is no chemo, nothing - because there is nothing to treat except brain mets. Thank you.  Michael  Michael,thank you for your reply to my twin sister's SCLC.My apology for not replying sooner,I've been with my sister for the last 10 days.I'm alittle confused,does your wife have NSCLC that had metastasized to her brain?I'm vary happy with your statement that as long as the primary lung cancer is not showing sings of active cancer cells or new tumors that the metastatic brain tumor can be treated indefinitely.If you could get back to me were you read this, I'd appreciate it.The problem is the horror stories connected to whole head radiation and gamma knife radiation.Granted there therapies have killed off the cancerous tumors,but has left another set of problems.Once the tumor has been radiated to death,tumor necrosis is the new problem.Necrosis is the dead tumor tissue,that then creates brain edema,which is the swelling around the dead tumor.The radiologist then has to perscribe steroids to keep the edema down.The new set of problems now that has arised are affecting her left side of her body.Her left eye is starting to lose sight,her left hand doesn't work anymore,it just hangs limp at her side,her left side of her mouth drups,so her speech is affected,her left leg is not working properly now,so she has a problem walking,she's fallen down several times now.The steroids are bad for the human body,but they are also bad for the bone density of the bones,they've perscribed her a calcium medication now for that.Steroids keep her face puffy.She also has to take 6 seizure pills daily,to keep her from having a seizure,from the swelling in the brain.The problem with the onocologist and the radiologist is,there's not much they know about tumor necrosis.There answer to necrosis is steroids,to keep the swelling down in the brain.They don't deal with this degree of tumor necrosis that my sister has vary often.The cancer usually kills the patient befor they have this major problem with necrosis.I've researched this necrosis problem and have found studies that states warfin,a blood thinner,and oxygen hyperberic chamber separetly or in combination help with tumor necrosis.I printed out a copy of the study and presented to the onocologist,and of course they really don't want to be told anything that you bring to them for something that might possibly work that there not suggesting.He stated he would read this 14 page study,I've yet to talk to him about what he thought of it,and the possiblity to my sister's tumor necrosis.The words I want cancer patients and there families to understand are yes,if your doctors state you need chemo,radiation or surgery,do it.It has kept my sister alive now for almost 2 years now,and SCLC is one of the fastest growing and moving cancers known.The problem is,there's a higher percentage of people that get NON-SMALL-CELL LUNG CANCER than SMALL-CELL LUNG CANCER,thus there's more research and studies done on NSCLC than on SCLC.My words to you and all cancer patients and there families,don't just wait and hope and pray and believe that everything is going to be alright and that you should not do anything more than chemo,radiation,and surgery that your onocologist recommends.These specialist have been trained in one thing only and that is what the MEDICAL ASSOCIATION and the BIG PHAMA INDUSTRY have taught them.Don't wait,research COMPLIMENTERY and ALTERNATIVE WAYS.There are hundreds of possible products that help with certain types of cancer,take a chance,choose one or two,and start taking them.Like I've stated,I have my twin sister on AHCC and POLYMVA,you've got one shot at making a difference in a loved ones life,and doing nothing but believing in your specialist in a wait and see,is not the answer.It wasn't the answer back in the 60's,when I remember my aunt's,uncle's,and friends of my family dying of this horrible disease.Granted, cancer research has come along alittle,but to my amazement,50 years later,they really haven't come along anough.To believe and hope that specialist has all the answers,is not the only way.Be proactive,don't wait,time is vary important when a loved one is diagnosed with cancer.    My prayers are with all, Dennis              P.S. To all,please reply, words help             Dennis1 Sun, 13 Jul 2008 00:00:00 GMT