Chemoembolization of liver mets in carcinoid

ssfbeagle

My husband is having chemoembolization of his liver mets due to his carcinoid.  He recently has been having right sided abdominal pain.  The CT scan showed a slight enlargement of one of the liver mets.  They think the enlargement is due to bleeding of the met.  What can we expect in terms of the procedure and aftercare?  Is the procedure successful?  Any response would be helpful.

 

Marynb

Ssfbeagle
Hi. There are not many of us Neuroendocrine cancer patients that post here. Have you tried the ACOR carcinoid listserve? I highly recommend that you do! Good luck.

northa914

Chemoembolization for liver mets

I had four TACE (transarterial chemoembolization) procedures done over the course of two years. The four TACEs brought my liver from being compromised over 50% to under 25%.  At the time of my procedures, I was under the false inpression that I had stage IV cholagiocarcinoma (bile duct cancer).  In January of 2013 I was rediagnosed with pancreatic neuroendocrine tumor.  My liver specialist explained to me that he would have done the same ting regardless of which cancer I actually had, so I'd say the TACEs were pretty successful.  The worst side effect I experienced was intense pain in my liver area which was made bearable with low doses of dilaudid (I was initially prescribed Celebrex which did absolutely nothing for me).  This lasted for 2 - 3 days.  After that I was tired for a couple of weeks, but not overly so.  Keep in mund that everyone is different, and I seem to tolerate chemo and special procedures better than most.  The biggest complaint I hear from others who have undergone this procedure is the pain.  Some describe it as excruciating, others describe it as a dull throb.  Be prepared for nausea as well.  Though I didn't have a problem with it, I've seen posts where it was an issue.  Hope this helps!  The TACE seems to be the only thing keeping the beast inside me under control, though I was getting improper chemotherapy dispensed to me for 2 1/2 years.  

ssfbeagle

northa914 said:

Chemoembolization for liver mets

I had four TACE (transarterial chemoembolization) procedures done over the course of two years. The four TACEs brought my liver from being compromised over 50% to under 25%.  At the time of my procedures, I was under the false inpression that I had stage IV cholagiocarcinoma (bile duct cancer).  In January of 2013 I was rediagnosed with pancreatic neuroendocrine tumor.  My liver specialist explained to me that he would have done the same ting regardless of which cancer I actually had, so I'd say the TACEs were pretty successful.  The worst side effect I experienced was intense pain in my liver area which was made bearable with low doses of dilaudid (I was initially prescribed Celebrex which did absolutely nothing for me).  This lasted for 2 - 3 days.  After that I was tired for a couple of weeks, but not overly so.  Keep in mund that everyone is different, and I seem to tolerate chemo and special procedures better than most.  The biggest complaint I hear from others who have undergone this procedure is the pain.  Some describe it as excruciating, others describe it as a dull throb.  Be prepared for nausea as well.  Though I didn't have a problem with it, I've seen posts where it was an issue.  Hope this helps!  The TACE seems to be the only thing keeping the beast inside me under control, though I was getting improper chemotherapy dispensed to me for 2 1/2 years.  

Thank you northa914

Thank you for you response.  We just got back from the hospital and the TACE procedure.  The IR doctor said there was new tumor growth in number and in size of the mets.  He will treat the left lobe of the liver next time and then retreat the right side since that has more involvement.  He said it has about an 80% success rate.  We also will start seeing a liver specialist.  I don't know if a transplant can be done.  Hopefully the two lymph nodes that are involved can be resected .  He said it may eventually cause an obstruction.  What a learning process!  I guess I was naive in  thinking all of this could be treated with Sandostatin!

Thanks again for all your help.

One other question I have for you.  We live in the SF bay area.  I know you have been seen by Dr. Wolin at Cedars Sinai from your previous posts.  Can our oncologist consult with him or does my husband need to see him in person?  Funds are a little short and I don't know if my insurance will allow a referral.

 

 

 

 

 

 

northa914

ssfbeagle said:

Thank you northa914

Thank you for you response.  We just got back from the hospital and the TACE procedure.  The IR doctor said there was new tumor growth in number and in size of the mets.  He will treat the left lobe of the liver next time and then retreat the right side since that has more involvement.  He said it has about an 80% success rate.  We also will start seeing a liver specialist.  I don't know if a transplant can be done.  Hopefully the two lymph nodes that are involved can be resected .  He said it may eventually cause an obstruction.  What a learning process!  I guess I was naive in  thinking all of this could be treated with Sandostatin!

Thanks again for all your help.

One other question I have for you.  We live in the SF bay area.  I know you have been seen by Dr. Wolin at Cedars Sinai from your previous posts.  Can our oncologist consult with him or does my husband need to see him in person?  Funds are a little short and I don't know if my insurance will allow a referral.

 

 

 

 

 

 

You’re not naïve in thinking

You’re not naïve in thinking that Sandostatin would be an effective treatment.  I think we all start our chemo regimes with the hope and belief that it will be the magic bullet.  From what I’ve learned, Sandostain is effective in relieving the symptoms that can caused by NETs and is can sometimes control or shrink existing tumors; however, it seems to be more effective for controlling and shrinking tumors if used in combination with another chemo drug.  In my case we tried Sandostatin LAR with Afinitor 10 mg. and found it ineffective after 10 months.  Bear in mind I have lesions that originated in my pancreas and spread to my liver, bones, and lymph nodes before we started treatments for NET due to my initial misdiagnosis, so my infestation (sounds like fleas, eh?) is very widespread and much harder to control.  There are other combination therapies to try.  At my stage, the name of the game is to at least control the disease.  I recently had a special research scan done at UCLA Medical Center (Ga 68 dotetate PET/CT scan), most likely to see if I’m a viable candidate for PRRT (peptide receptor radionuclide therapy).  Unfortunately, PRRT is only available in Texas as a patient-sponsored clinical trial and uses only one of three radionuclides.  PRRT is available overseas and has been for over 10 years now, and uses three radionuclides to kill the cancer.  Either way, the price is around the $60,000 range so the cost at this point is prohibitive.  Dr. Wolin has applied for use of PRRT in clinical trial;  however its approval may be too far down the road for me.  I think your husband’s oncologist is on the right track with the TACE.  The next step is to consult with a specialist who can quarterback future treatments. 

 

I don’t know if Dr. Wolin will do a phone consultation without knowing your husband’s particular case.  It’s worth a try and may give you some relief to know the different options available besides Sandostatin and TACE.  If you haven’t gotten a second opinion about your husband’s diagnosis, your insurance company may authorize at least a consultation with Dr. Wolin.  If you can get one, you may then be able to have a phone appointment to discuss your case after Dr. Wolin has reviewed all of your medical history related to the NET.  My Blue Shield HMO allowed me a consultation but since that’s all they would authorize,  I switched to a Blue Shield PPO so I could have Dr. Wolin as part of my team.  Start with your insurance and see if they’ll authorize a consultation and if your insurance is accepted by him for future appointments.  I have an appointment with him on Monday, February 3^rd, and will ask about the phone consultation. 

 

I hope this helps and I haven’t confused you more!

ssfbeagle

northa914 said:

You’re not naïve in thinking

You’re not naïve in thinking that Sandostatin would be an effective treatment.  I think we all start our chemo regimes with the hope and belief that it will be the magic bullet.  From what I’ve learned, Sandostain is effective in relieving the symptoms that can caused by NETs and is can sometimes control or shrink existing tumors; however, it seems to be more effective for controlling and shrinking tumors if used in combination with another chemo drug.  In my case we tried Sandostatin LAR with Afinitor 10 mg. and found it ineffective after 10 months.  Bear in mind I have lesions that originated in my pancreas and spread to my liver, bones, and lymph nodes before we started treatments for NET due to my initial misdiagnosis, so my infestation (sounds like fleas, eh?) is very widespread and much harder to control.  There are other combination therapies to try.  At my stage, the name of the game is to at least control the disease.  I recently had a special research scan done at UCLA Medical Center (Ga 68 dotetate PET/CT scan), most likely to see if I’m a viable candidate for PRRT (peptide receptor radionuclide therapy).  Unfortunately, PRRT is only available in Texas as a patient-sponsored clinical trial and uses only one of three radionuclides.  PRRT is available overseas and has been for over 10 years now, and uses three radionuclides to kill the cancer.  Either way, the price is around the $60,000 range so the cost at this point is prohibitive.  Dr. Wolin has applied for use of PRRT in clinical trial;  however its approval may be too far down the road for me.  I think your husband’s oncologist is on the right track with the TACE.  The next step is to consult with a specialist who can quarterback future treatments. 

 

I don’t know if Dr. Wolin will do a phone consultation without knowing your husband’s particular case.  It’s worth a try and may give you some relief to know the different options available besides Sandostatin and TACE.  If you haven’t gotten a second opinion about your husband’s diagnosis, your insurance company may authorize at least a consultation with Dr. Wolin.  If you can get one, you may then be able to have a phone appointment to discuss your case after Dr. Wolin has reviewed all of your medical history related to the NET.  My Blue Shield HMO allowed me a consultation but since that’s all they would authorize,  I switched to a Blue Shield PPO so I could have Dr. Wolin as part of my team.  Start with your insurance and see if they’ll authorize a consultation and if your insurance is accepted by him for future appointments.  I have an appointment with him on Monday, February 3^rd, and will ask about the phone consultation. 

 

I hope this helps and I haven’t confused you more!

Again, thank you.

I am finding this whole experience so frustrating.  We were led to believe that carcinoid is slow growing yet his latest CT showed a 20% increase in six months according to the IR doc.  The original biopsy showed the tumors to be low grade well differentiated.  I was shocked with the findings.  I try to be hopeful but cancer has been in my life for the last 10 years.  I lost both parents and two dogs due to it.

 

Today my husband has much less pain.  YEAH!  Still working on getting his appetite back.  He has lost about 7 pounds in the past two weeks.

 

 

 

 

 

 

 

 

 

 

klisesr

ssfbeagle said:

Thank you northa914

Thank you for you response.  We just got back from the hospital and the TACE procedure.  The IR doctor said there was new tumor growth in number and in size of the mets.  He will treat the left lobe of the liver next time and then retreat the right side since that has more involvement.  He said it has about an 80% success rate.  We also will start seeing a liver specialist.  I don't know if a transplant can be done.  Hopefully the two lymph nodes that are involved can be resected .  He said it may eventually cause an obstruction.  What a learning process!  I guess I was naive in  thinking all of this could be treated with Sandostatin!

Thanks again for all your help.

One other question I have for you.  We live in the SF bay area.  I know you have been seen by Dr. Wolin at Cedars Sinai from your previous posts.  Can our oncologist consult with him or does my husband need to see him in person?  Funds are a little short and I don't know if my insurance will allow a referral.

 

 

 

 

 

 

Bay area carcinoid specialist

Hi - I have carcinoid with liver mets (diagnosed in 2006) and am currently in a clinical study with Dr. George Fisher at Stanford.  He's a great oncologist, very knowledgeable about carcinoid, multiple therapeutic options available (including numerous clinical trials) whom I would highly recommend. 

northa914

ssfbeagle said:

Again, thank you.

I am finding this whole experience so frustrating.  We were led to believe that carcinoid is slow growing yet his latest CT showed a 20% increase in six months according to the IR doc.  The original biopsy showed the tumors to be low grade well differentiated.  I was shocked with the findings.  I try to be hopeful but cancer has been in my life for the last 10 years.  I lost both parents and two dogs due to it.

 

Today my husband has much less pain.  YEAH!  Still working on getting his appetite back.  He has lost about 7 pounds in the past two weeks.

 

 

 

 

 

 

 

 

 

 

You definitely have had

You definitely have had enough cancer in your life, heck, even one day of it is entirely too much!  You are for sure  a trooper and an angel as well.  I spoke with Dr. Wolin yesterday during my appointment about your situation. He said he has done phone consultations before after reviewing all of a patient’s medical records, but he said it's best to have a face-to-face meeting so he can better advise you and get to know your current situation.  Your primary oncologist can confer with him regarding treatment options, but it's best to have a specialist as part of your authorized team with your primary oncologist dispensing the therapies.  Before you proceed with further chemo treatments, I highly suggest you consult with Dr. Wolin as Cedars has an entire department dedicated to the research and treatment of neuroendocrine tumors.  If you look on the carcinoid.org website, there are doctors listed in the Bay Area that have expertise with NETs, but none that devote all of their time and research to them.  Should you decide to seek an authorization from your insurance for at least an opinion from Dr. Wolin and are able to schedule a turn-around flight, I would be more than happy to pick you up from LAX and take you to your appointment and then keep you company until your return flight.  Cedars is only about 30 minutes from LAX (without traffic) and LAX is about 45 minutes from where I live in North Orange County, so it's no trouble for me and I'm more than happy to help.  The Samuel Oschin Cancer Center at Cedars is where Dr. Wolin practices and isn't hard to get to if you know your way around the Cedars complex, but traffic and figuring out where to park can be daunting when you visit the first time.  I circled the medical complex twice before I knew which lot to park in, then had to figure out where to check in, etc.

Part of the reason I'm pushing for you to have a consultation with a specialist is because of my own experience with clinical trials, therapies, etc.  Because we were chasing the wrong type of cancer for 2 1/2 years, the various therapies have excluded me from participating in most of the clinical trials offered.  These trials aren't for end-stage patients only, and the ones offered to me were not the placebo vs drug type.  They were for Afinitor (everolimus) and a new and improved version of it, and for a combination therapy of Temodar and Xeloda.  I was excluded from the first because I had had more than two chemo regimes and from the second because one of my therapies had included Xeloda.  It didn't matter that I had never specifically received treatment for my pNET, I was still not eligible.

I hope your husband continues to improve and feel better after his TACE.  Please let me know if there’s any other way I can help!

 

Andrea