Part Twelve: Where PRRT & Me part ways

In August, I went to see my specialist in Iowa City and was presented with terrible news. The lesions in my liver went to 5% tumor burden in January 2017 to 30% tumor burden in August 2017. PRRT was completely ineffective for me. (Or maybe it was effective and the results could have been worse.) But, my tumor activity was never this active prior to treatment.

Doctor O’Dorisio told me that sometimes they see this happen with PRRT – where the tumor become very aggressive after PRRT and then stabilize. But, he also said, we don’t want to wait around to see if that is going to happen. So, I am slated for more treatment in the next month. They offered me two options at this point either embolization or an oral chemo combination called CapTem.

First option is embolization.  There are three ways they can do embolization:

  1. Bland
  2. Chemo
  3. Radiation

There are pros and cons to each. Embolization is a radiology procedure that is not as invasive as surgery. Each are performed the same way, they just deliver different types of treatment material to the liver. They pass a catheter from an artery that starts at your inner thigh up to the portal vein in the liver. From there, they are able to follow the veins which are major blood supplies to the tumors. From there they deliver whatever material is chosen for your treatment.

Bland embolization or arterial embolization is also known as trans-arterial embolization (or TAE). A dye is usually injected into the bloodstream at this time to help the doctor monitor the path of the catheter via angiography, a special type of x-ray. Once the catheter is in place, small particles (talc) are injected into the artery to plug it up. This procedure requires one day hospitalization for observance. Patients tend to have more side effects such as nausea from this procedure, but, it is rarely a major concern.

The second method we discussed was trans-arterial chemoembolization or TACE. This is done by using tiny beads that give off a chemotherapy drug for the embolization. TACE can also be done by giving chemotherapy through the catheter directly into the artery, then plugging up the artery. Dr. Howe and Dr. O’Dorisio both agreed that chemoembolization was out for me. Since I had so much good liver left, they wanted to avoid this as chemoembolization can kill good tissue in the liver, too.

The final embolization method is radioembolization. This is done by injecting small beads (called microspheres) that have a radioactive isotope (yttrium-90) stuck to them into the hepatic artery. Once infused, the beads lodge in the blood vessels near the tumor, where they give small amounts of radiation to the tumor site for several days. The radiation travels a very short distance, so its effects are limited mainly to the tumor.The obvious “con” with radiation is – well – radiation. If you have already hit your lifetime radiation limits, it can preclude you to the treatment. If you are a candidate it takes multiple procedures. The pro is, most patients respond very well to it. While it requires multiple procedures, each is a one-day, no hospitalization process.

The second option is a chemo regimen that is quite effective for many neuroendocrine cancer patients called CapTem. CapTem is a shortened abbreviation for two types of medications, capecitabine (Xeloda) and temozolomide (Temodar). The two medications are taken in a specific order, capecitabine first, temozolomide second. Through studies it was found that this approach is more effective than giving both drugs at the same time. This combination has been effective, even in patients with tumors that hadn’t responded to any other standard treatment, including chemotherapy, high-dose octreotide, radiation therapy, or surgery. The rate of serious side effects is relatively low with CapTem. But, if you remember my experience with Afinitor, I did not do great with oral chemo. Lots of side effects.

After consulting with my local oncologist, my first choice is to go radioembolization, but, if they don’t feel it is safe for me, I will do the bland embolization. The radiology team is carefully calculating my lifetime radiation dosage. I have also decided to work with Virginia Piper / Abbott Northwestern hospital in the Twin Cities for this next round of treatment. Turns out their radiology department is extremely experienced with liver embolizations and actually does the third highest volume in the United States of radioembolization. They are quite versed in neuroendocrine cancers and have done a number of embolizations after patients have done PRRT in Europe. Radioembolization at University of Iowa would just require so much transportation (four trips in total) over the next couple of months, and honestly, I driving 10 hours round trip for one treatment is out of the cards for me.

The obvious question is: do I regret doing PRRT? Not really. I am happy I gave it a chance since it is touted as such a great treatment option. Many people get up to four years of stability from it. It didn’t work for me…which is exactly why I need this to be spelled out in black and white for everyone to read. Just because PRRT is a great treatment for many….it isn’t for everyone. I had every reason to do well with this treatment and it failed. This is why I always stress to patients that they must remain engaged and advocate for new treatments. PRRT is only one piece to our treatment puzzles.

So, with this last post, I am closing this PRRT blog. Should it ever seem to be a viable option for me again, I will consider it, but, with a lot more skepticism. I was incredibly confidant this modality was going to be the silver bullet for me. Sadly, it was not.

You can always find my patient profile on this site, where I will continue to update my course of illness.

Thanks for following me through this process. I’m at a new fork in the road, it’s just following a new prong.

Dawn Marie on Twitter
Dawn Marie
Dawn Marie
Patient and advocate for better diagnosis, treatment and quality of life for people living with neuroendocrine cancers.