Carcinoid cancer merry-go-round

I met with my oncologist last Thursday and reported the increasing carcinoid symptoms which I mentioned in my last post:  “Latest Carcinoid Survival Data”.  We also discussed the interesting information from that last post.

The result is that I am having a new test called the 5-HIAA which is inconvenient to do but should give a more accurate measurement of seratonin in my blood stream.

Also, I am in process of scheduling another chemoembolization treatment like I had about a year and a half ago.  The treatment takes about an hour in the hospital and I stay overnight afterward.  In fact the last time I was in intensive care overnight. During the treatment I had a cardio crisis with very low heart rate and very low blood pressure. It makes me very ill for about 4 weeks but the last time I felt very well for more than 5 months after.

Essentially the doctor insert a catheter in the artery which feed the tumors in the liver and injects chemo (in this case adriamycin) into the liver and then injects tiny beads that block the artery so that the tumor gets no blood.  Sometimes the chemo is on the beads.  This is possible because the liver gets over 90% if it’s blood from another artery while the tumors get over 90% if their blood from the artery that comes up your leg.

We are also scheduling a visit with an oncologist at University of Colorado Cancer Center.  We will talk about my availability and suitablility for clinical trials and he will get to know my case.  I have thought that it would be good to have a doctor from outside my HMO take a look at me.

So, back on fun rides again.  Who said that I wouldn’t have anything to do after retirement?  My days are full!

Edit Feb 13, 2013:  I just found a pretty good description of carcinoid tumor at cancer.net “Carcinoid Tumor Overview”.  Inexplicably, this and many other overviews do not spend much time on the metastases and treatment of metastases, which is often (certainly in my case) the most immediate problem.

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Carcinoid cancer merry-go-round was last modified: March 8th, 2018 by cy

10 thoughts on “Carcinoid cancer merry-go-round

  1. Good luck on this journey. I am a fellow carcinoid patient with tumors on my liver. I haven’t had this treatment yet, but I’m glad it works or you.

    1. Steve,
      Thanks for your support. I have it scheduled for mid-March. When you schedule this for you, make sure that your radiologist and anesthesiologist know and use the carcinoid protocol to prevent you from going into crisis. Very briefly, this consist of a Sandostatin injection before anesthesia, a Sandostatin drip during the procedure. No epinephrine in the anesthesia (it is commonly part of the mix and carcinoids should not have it in any case except life or death). The anesthesiologist should be well prepared with anything needed to treat very low or very high blood pressure and very low heart rates. My last procedure we had all that and I still went into crisis. It is unclear whether it was carcinoid crisis or plain old cardiac crisis. My radiologist tells me that 25% of the time crises occurs even with all that. I had very low pulse rate and very low blood pressure and spent the night in intensive care. This time, they are planning a heavier dose of Sandostatin before the procedure.
      Good Luck on the adventure Steve. As Buddhists sometimes say, “May you have the best possible outcome.”

  2. Thanks to all of you for your kind wishes. The best thing is that I still don’t feel very sick. The chemoembolization will not occur until sometime in March probably.

  3. Cy, I can only say that I can’t imagine what you’re going through, this is so hard…but you know the Norton’s are praying for you and pulling for you. I’ll be in touch this week…

  4. Cy,

    There are other ways to stay busy during retirement! But seriously, as a notoriously bad patient and general wuss, I greatly admire your attitude durig all these mysterious twists and turns of your unwelcome visitor. All good thoughts go your way!

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