After waiting, while getting biweekly blood tests, for about three weeks, we saw the oncologist Wednesday and hematologist Friday at the General. There was somewhat positive news from each appointment, which I’m happy to report.
My oncologist Wednesday advised that my platelets had come up to 79 Monday, after round two of steroids. She advised that she would touch base with the hematologist early in the next week, then call me, to discuss the collective treatment plan. If my platelets remain around this level, she does not want to put me back onto Sutent, as there is a risk that Sutent will lower the platelets further. If I am back-and-forth on steroids to bounce up the platelets, then I am not a candidate for Nivomulab, which increases the immune system also (the overworking immune system is what attacked the platelets). If the hematologists continue to need to monitor platelets for some time, however, she suggested that we could apply for a second line therapy, either Everolimus or Affinitor, which do not affect the platelets the way that Sutent can.
Friday, the hematologist advised that my platelets had stayed up at 68 by Thursday. Even more promising to me was that they had come up from 23 to 45 during the break from steroids – so maybe recovering on their own. She advised that if my reaction was idiopathic (not caused by Sutent), there was a 30% chance that the platelets would recover on their own after two courses of steroids. About 30% of people have an increase in platelets and then they drop off again at some point (could be weeks, months or years later). In about 30% they do not increase at all.
She advised they would need to continue monitoring weekly to see where the platelet levels go – whether they stay up at about 70 (she said anything over 50 was relatively safe), increase or decrease. They do not continue with courses of steroids, but only run the two courses. However, there are other drugs which boost the bone marrow to make more platelets. These drugs are only available with insurance, and may or may not be used in my case, depending on how the monitoring goes. Generally the drugs have not been used in cancer cases, so this needs to be considered. She confirmed that they would not do a splenectomy in my case. She did say that she would be consulting with my oncologist about whether to do a bone marrow biopsy. If there is cancer in the bone, there is also a chance that there is cancer in the bone marrow, which could also have led to the loss of platelets. The biopsy would take 15 minutes and be done in an examination room at the hospital.
The hematologist said that they were still not sure whether the drop was idiopathic or caused by the Sutent. She said in her view, it was likely enough that it was Sutent that Sutent should probably not be retried.
So, we are relieved that my platelets have come up enough that I am not currently in ‘dangerous’ territory. I can resume some of my ordinary activities. We are relieved that there may be other treatment options for the platelets, if they turn out to be necessary. We are disappointed to hear about Sutent probably no longer being an option, but relieved that there may be other cancer treatments available to try.
I can also report that we saw two movies within the past week. One highly recommended: ‘Captain Fantastic’, with Viggo Mortensen, which we saw with Beth and Craig. One (last night) rather ho-hum: ‘Cafe Society’, Woody Allen’s latest, in which he seems to have run out of gas in the tank. However, still appreciating movies as a great distraction from all of this medical stuff. Recommendations appreciated.