I had a great appointment with Dr. Lao yesterday. We have a new care plan that gives me hope and confidence! Since the steroids are prohibiting me from getting immunotherapy right now, I am going to start the BRAF therapy again. I did this in December, January and February when I was recovering from the spinal fusion surgery. We had good results with it, and saw tumors shrinking. BRAF is an oral pill therapy that I just take at home daily, no needles required, and fewer trips to Ann Arbor! So I am thrilled to get back on the protocol, especially since that recent chest CT revealed new growth in my lungs (hence the shortness of breath that I experienced). You might be thinking, why would I have stopped the BRAF protocol in February if it was being effective? That's what I asked too. It turns out that the BRAF protocol is only effective while it is being administered, as opposed to immunotherapy which can keep working for awhile after it is in your system even if you are not getting additional infusions. Additionally, the body will reach a point with BRAF where the body gets saturated and the BRAF is no longer effective (there's a word for this that I am trying to remember but I can't quite think of it at the moment). There is no way to know how long the BRAF will be effective for each individual. So BRAF is like a bridge therapy, an effective short-term therapy, perfect for my situation where I need a little more time to wean off these steroids. The new care plan has me on BRAF for about three months and then we plan to restart immunotherapy, and we might go back to the two-drug infusion. Dr. Lao said my case is very unique with all the changes and switches of therapy protocols, and we are in uncharted territory. It is fascinating and scary all at the same time. I am just thrilled to start the BRAF and attack these darn tumors!
About the pain- if it is due to the radiation, then Dr. Lao expects that it will resolve in time as the body heals. If, however, the pain is from the melanoma, then there's not much to be done except manage the pain with meds as we are currently doing. It is possible that if the BRAF shrinks tumors, the pain will decrease as well. But there is no way to know right now whether we are dealing with radiation pain or melanoma pain. I just have to wait it out and see.
I want to thank everyone for your kind responses to my previous post. You have all been so supportive and understanding, I received so many messages and texts and calls and visits to lift me up in response to that post. I really, really appreciate it because I was in a low spot. The low spots seems to be coming a little more often so I am getting help with that too. I don't feel like I am strong or brave or a fighter but I appreciate you all saying that I am. Really I'm just a regular Joe doing what I have to do to keep moving, keep growing, keep living. But I certainly couldn't do it without my friends and family!! Love you!!!
Thank you a million bajillion times for being you!