Clinical Trial Question

robin345

My husband was recently diagnosed with advanced stage HCC, we will be starting a clinical trial at Emory in Atlanta, Ga soon.

Is anyone involved in a clinical trial or been in one in the past?  This one involves chemoembolization and nexavar.

 

XtremediverHCC

Clinical trials will put you

Clinical trials will put you on the leading edge of technology and medicine as it is being developed.  That said, it may or may not help in your husbands situation but anything is better than nothing (in my opinion). I have always participated when asked for just those same reasons - it has now been 6 years since my first diagnosis and I am still going strong.  I hope this helps in some way and offers you some reassurances and hope.

robin345

XtremediverHCC said:

Clinical trials will put you

Clinical trials will put you on the leading edge of technology and medicine as it is being developed.  That said, it may or may not help in your husbands situation but anything is better than nothing (in my opinion). I have always participated when asked for just those same reasons - it has now been 6 years since my first diagnosis and I am still going strong.  I hope this helps in some way and offers you some reassurances and hope.

clinical trials

Thanks so much for the response.  We hit a disappointment today in the fact that my husband is not a candidate for the trial. It has now been determined that it is too advanced and

noew they are going to try Y90 radiation spheres.

mydeardad

robin345 said:

clinical trials

Thanks so much for the response.  We hit a disappointment today in the fact that my husband is not a candidate for the trial. It has now been determined that it is too advanced and

noew they are going to try Y90 radiation spheres.

Y90

Be careful and ask a lot of questions. Once we were told that my father’s liver’s cancer had progressed beyond the transplant parameters I think we were in such shock that we did not ask enough questions to fully understand the risks and consequences of the recommended cancer treatments. He started the Nexavar, at a half dose, and it was too much for his body and had to stop after one week. The oncologist then tried the Y-90 thermospheres. They were implanted on September 10^th, 2012 and put his liver over the edge. His ammonia levels went through the roof and he passed away on October 17^th, 2012.

robin345

mydeardad said:

Y90

Be careful and ask a lot of questions. Once we were told that my father’s liver’s cancer had progressed beyond the transplant parameters I think we were in such shock that we did not ask enough questions to fully understand the risks and consequences of the recommended cancer treatments. He started the Nexavar, at a half dose, and it was too much for his body and had to stop after one week. The oncologist then tried the Y-90 thermospheres. They were implanted on September 10^th, 2012 and put his liver over the edge. His ammonia levels went through the roof and he passed away on October 17^th, 2012.

Y90

Mydear dad, I'm so sorry to hear about what happened with your dad.  Did they tell you this is the treatment we think will shrink the tumor?  Was your dad

sick the entire time after Y90 until he passed?  I feel that this is the only option they are giving us to possibly shrink the tumor.  I am so afraid.  How was your dad before the Y90?  What would you do now knowing what you know? 

Lora51

robin345 said:

Y90

Mydear dad, I'm so sorry to hear about what happened with your dad.  Did they tell you this is the treatment we think will shrink the tumor?  Was your dad

sick the entire time after Y90 until he passed?  I feel that this is the only option they are giving us to possibly shrink the tumor.  I am so afraid.  How was your dad before the Y90?  What would you do now knowing what you know? 

questions

Hi, Robin i just found out in october of 2012 that i have liver cancer i am a 51year old female and lots to live for they say i cannot have surgery because i have a bloodclod and tumor right in the center of my liver. I am not sick only thing is pain in my abordmen. I am going to start nexavar next week so how is this gonna make me feel. I have been looking at the therasphere thing to see what that is about if i cannot take the nexavar. can you tell me anything about all this stuff that you had to deal with your dad i am sorry about him to.

robin345

Lora51 said:

questions

Hi, Robin i just found out in october of 2012 that i have liver cancer i am a 51year old female and lots to live for they say i cannot have surgery because i have a bloodclod and tumor right in the center of my liver. I am not sick only thing is pain in my abordmen. I am going to start nexavar next week so how is this gonna make me feel. I have been looking at the therasphere thing to see what that is about if i cannot take the nexavar. can you tell me anything about all this stuff that you had to deal with your dad i am sorry about him to.

Sharing what I knpw

Hi Lora51,

Actually it is my husband that has liver cancer (HCC- primary liver cancer), I was commenting on someone else's dad.  Have they told you why surgery is not an option? The reasons that my husband can't have surgery is the size of the tumor (several have clustered together totaling 19 cm.  It is involved in the hepatic and portal artery).   We live in Georgia, the local oncologist and surgeon referred us to Emory(which is a larger more advanced hospital).  We were sent to participate in a clinical trial that involved nexavar and chemoembolization being done at the same time, which is first time it will be tried.  My husband did not qualify because the doctor did not want to chance that he might get the placebo instead of the nexavar.  His is too advanced.  Have they told you what stage your liver cancer is?  The pain is probably the tumor, my husband has pain that is a sharp pain on his right side, which is where the tumor is.  So after they said no to the clinical trial they suggested the Y90 therasphere radiation.  They did a shunt study (this is where they go in through the groin and inject dye to map the arteries and veins that the radiation will travel.  Some people have extra veins and arteries that lead to other organs, they will have to coil these off to block radiation going there if they can.  My husband had no extra so we are okay there. Today they did a pet scan and another CT, to see if the cancer has spread.  They saw a spot on his stomach.  The therasphere Y90 is to shrink tumor. Nexavar slows the growth sometimes shrinks but from what I understand slows the growth of tumor.  My husband has not started the nexavar, he will take it after Y90 theraspere.  Hope this helps. 

nanajacksonx3

robin345 said:

Sharing what I knpw

Hi Lora51,

Actually it is my husband that has liver cancer (HCC- primary liver cancer), I was commenting on someone else's dad.  Have they told you why surgery is not an option? The reasons that my husband can't have surgery is the size of the tumor (several have clustered together totaling 19 cm.  It is involved in the hepatic and portal artery).   We live in Georgia, the local oncologist and surgeon referred us to Emory(which is a larger more advanced hospital).  We were sent to participate in a clinical trial that involved nexavar and chemoembolization being done at the same time, which is first time it will be tried.  My husband did not qualify because the doctor did not want to chance that he might get the placebo instead of the nexavar.  His is too advanced.  Have they told you what stage your liver cancer is?  The pain is probably the tumor, my husband has pain that is a sharp pain on his right side, which is where the tumor is.  So after they said no to the clinical trial they suggested the Y90 therasphere radiation.  They did a shunt study (this is where they go in through the groin and inject dye to map the arteries and veins that the radiation will travel.  Some people have extra veins and arteries that lead to other organs, they will have to coil these off to block radiation going there if they can.  My husband had no extra so we are okay there. Today they did a pet scan and another CT, to see if the cancer has spread.  They saw a spot on his stomach.  The therasphere Y90 is to shrink tumor. Nexavar slows the growth sometimes shrinks but from what I understand slows the growth of tumor.  My husband has not started the nexavar, he will take it after Y90 theraspere.  Hope this helps. 

nexavar and TACE with adriamycin

Robin, my husband (stage IV liver w mets to lymph nodes) had chemo embolization treatments of adriamycin x 4 (started Aug 2012) while on Nexavar (started July 2012). Tumors shrunk 25%. until now Nexavar has stopped progression. labs drawn a week ago indicated the need to repeat a CT which we will do today.   hope this helps someone. Joy

nanajacksonx3

robin345 said:

Sharing what I knpw

Hi Lora51,

Actually it is my husband that has liver cancer (HCC- primary liver cancer), I was commenting on someone else's dad.  Have they told you why surgery is not an option? The reasons that my husband can't have surgery is the size of the tumor (several have clustered together totaling 19 cm.  It is involved in the hepatic and portal artery).   We live in Georgia, the local oncologist and surgeon referred us to Emory(which is a larger more advanced hospital).  We were sent to participate in a clinical trial that involved nexavar and chemoembolization being done at the same time, which is first time it will be tried.  My husband did not qualify because the doctor did not want to chance that he might get the placebo instead of the nexavar.  His is too advanced.  Have they told you what stage your liver cancer is?  The pain is probably the tumor, my husband has pain that is a sharp pain on his right side, which is where the tumor is.  So after they said no to the clinical trial they suggested the Y90 therasphere radiation.  They did a shunt study (this is where they go in through the groin and inject dye to map the arteries and veins that the radiation will travel.  Some people have extra veins and arteries that lead to other organs, they will have to coil these off to block radiation going there if they can.  My husband had no extra so we are okay there. Today they did a pet scan and another CT, to see if the cancer has spread.  They saw a spot on his stomach.  The therasphere Y90 is to shrink tumor. Nexavar slows the growth sometimes shrinks but from what I understand slows the growth of tumor.  My husband has not started the nexavar, he will take it after Y90 theraspere.  Hope this helps. 

nexavar and TACE with adriamycin

Robin, my husband (stage IV liver w mets to lymph nodes) had chemo embolization treatments of adriamycin x 4 (started Aug 2012) while on Nexavar (started July 2012). Tumors shrunk 25%. until now Nexavar has stopped progression. labs drawn a week ago indicated the need to repeat a CT which we will do today.   hope this helps someone. Joy