Chemoembolization of liver mets in carcinoid

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 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 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 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.

 

 

 

 

 

 

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.