Yesterday I began the AT13387 HSP90 trial at OHSU. I was excited to get going on something new since the Regorafinib wasn't working. The one thing I was concerned about was the side effects from 2 drugs at the same time because part of this trial is 400 mg of Gleevec plus the study drug. It's been 24 hours with no side effects. It would be nice if it stayed that way. Bill
I am the first patient at OHSU in this trial, and 1 of 7 overall so far. Mike Heinrich is optimistic about the use of combination therapy to attack GIST tumors.
There is a 2 page list of side effects but many are the same as the TKI's. I had to wait about 6 weeks to start because the trial was on hold because of a patient with kidney issues. Since then the dose has been reduced a little. Based on the tests I had to take prior to starting, I think there could be heart related problems. I say this because I had to have Echo and EKG prior to beginning, and I had to wear a mini EKG monitor during the infusion and then have a regular EKG 4 hours after I was done.
There was an extensive eye exam before, that included a field of vision test. Some of the side effects with vision are double vision, blurred vision, flashes, color changes and difficulty with changes from dark to light. The last is the one Heinrich warned me about.
So far the thing that I have had to deal with is the big "D", but I don't know if that is from the HSP90 or Gleevec. It has been a year and a half since I have taken it and I can't remember what trouble it caused me, if any, at the 400mg level. My forearm, where the IV went in is a little sore, but that is no big deal. I also am a little more tired than usual.
I will follow up after next weeks infusion when I have to stay for 8 hours and have my blood tested every couple of hours plus having to go back first thing in the morning the next day for more blood.
This a very interesting ordeal, not how I planned on spending 4 years early in my retirement, but I am still looking at the grass from the green side, so all is good!
Today I will receive my 3rd infusion in the second cycle of AT 13387. I won't have any results until a CT is done on day 28 of the second cycle, which is March 20. It is a challenge getting up for the infusions because I never know what the side effects have in store for me. A couple of times, none what so ever, one was like having your worst hangover ever, for 3 days, and the others in between. Zofran has been a lifesaver, and I have gone through plenty off Immodium, although once I thought of using the little container as a plug instead of taking the pills. The thing that keeps me going back is the wonderful staff at the OHSU infusion center, and getting to know all the courageous people who are much sicker than I am.
Well it looks another dead end with Astex HSP90 trial. I was experiencing some moderate pain at bottom of my rib cage on the right side so I went in and was given my CT a week early. All of the tumors in my liver were now growing, in fact some had doubled in size. It appears to me that the AT13387 was not solving the problem but exacerbating it. All this happened in a 49 day period. One tumor went from 5.7x6.2 cm to 7.4x11.2 cm, another 4x4.7 cm to 6.2x7.9 cm. I am running out of options here.