Well, the time to head to New Orleans is almost upon us and this will involve my first round of MIBG treatment. We go to the clinic on October 22nd for a 2pm appointment and then I check into the hospital at 1pm on Wednesday, October 23rd at 1pm for my injection. The way I understand it, I will get an IV and the treatment will be infused into my body over the next hour or so.
Then begins my two days of isolation in the special hospital room. I will not be allowed visitors for the next two days and will not be visited by the doctor until the 24th. If all goes well, I will be discharged on the morning of the 25th and we will be on a flight home, early on the 26th. I may feel some flu like symptoms over the next few days but symptoms should be fairly minor. They have also never had anyone go into carcinoid crisis during treatment so that is something about we we do not need to be concerned!
Returning home, I need to avoid contact with pregnant women and very small children so if you or anyone you know meets those criteria, keep them away from me until after October 30th. Various other restrictions apply such as not sleeping in the same bed as my wife and double flushing the toilet but, once we reach October 30th, all restrictions are off. If you are interested there are details of the treatment and recovery period here. Unfortunately, I will not glow in the visible spectrum...
Now, some of you have asked about the lesion that was seen on my right lung and appeared to be growing faster than one would expect for a carcinoid tumor. We had planned on performing a biopsy (wasn't really looking forward to a big needle going into my chest) but several radiologists looked at the scans and were puzzled. The shape, position, and other characteristics of the tumor made them think that this was not a tumor but, rather it is a round atelectasis.
I have never heard of this before but this is a collapsed, folded area of the lungs and occasionally occurs after being irritated from surgeries. If this is the case, then we should see stable behavior on upcoming CT scans rather than the growth we would see if it were a tumor. If it does grow, we will probably need to biopsy at that time but, for now, we will just wait and monitor.
Over the following couple of months, we hope to see a reduction in the levels of my tumor markers. I don't expect that we will be able to see tumor regression but the reduction in carcinoid syndrome will definitely be appreciated! If all goes well, we may return for a second round in 3-4 months or may look into PRRT in Europe if my kidneys can tolerate it. Other options include a trial of pazopanib which is currently recruiting and has shown some anti-growth characteristics for carcinoid, similar to sunitinib. It also, since pazopanib uses a similar pathway for slowing the growth as sunitinib, the success of both seems encouraging.
