Thanks to those that have responded to our previous post and to all that have taken the time to post on this forum both recent as well as distant past as it has provided to be a valuable resource.
We met with Dr. Margolin on Tuesday only to find out that she will be leaving SCCA soon and we will be selecting a different medical oncologist. Other choices available at SCCA are also excellent melanoma specialists and we are not worried on that front.
Disclaimer :-) The amount of information provided and it's technical nature combined with my (Rob) selective hearing and lack of understanding may not be completely accurately conveyed here as to what was actually said at our meeting with the Dr. (so don't necessarily blame the Dr.)
The Dr. seemed to feel that Adriana's cancer was currently slow growing although she did seem to agree with Adriana's feeling that the most recent area on her arm was re-growing as it had not been excised beyond the biopsy. I asked about the use of additional scans in establishing growth rate and she indicated that they were not usually repeated this soon, based on cost/insurance coverage factors. Additionally she indicated that growth rate changes over time and that scans can provide a snapshot but are not necessarily a good indicator of future growth rate.
The Dr. indicated that she would be following up on the BRAF status and explained the BRAF treatments, indicating that in general they were were quite effective at around 70% response but only enjoyed about 7-9 months durability. Thus the BRAF treatment should be reserved for a time when it may be needed down the road.
Basically the current treatment choices recommended for Adriana were IL-2 and Ipi. The process, length of treatment, side effects, and statistical response rate and potential for complete response rates were explained. There was a lot of info here so if those knowledgeable here could please review our understanding. IL-2 response rate around 12% with around 6% complete response rate that tend to be very durable. Ipi response rate around 20-25%. We were unclear as to a durable response rate although understand that it hasn't been around nearly as long, but that is working quite well. Overall response between the two around 20% .
The Dr. indicated that that in general IL-2 was used first for various reasons including it's unavailability should brain mets develop and it's greater track record/documentation of first use as it is an older drug. Although I did not fully understand this approach at the time I do now after further research on my part.
If anyone here can direct me to documentation supporting the use of Ipi prior to IL-2 it would be appreciated as I did not find much.
The Dr. did seem to prefer the IL-2 first approach but indicated that Adriana can choose either and had some time to do so. We questioned if Adriana might have some time to travel to OH to visit her family prior to starting treatment. The Dr. indicated that it was an option for her and that although starting treatment was important it wasn't imperative that it be immediate.
The Dr. also explained that there was the potential for her to participate in a trial combining radiation with Ipi that she would be looking in to. She explained that the radiation would be directed to one spot and it is thought that by doing so it triggers an immune response against other cancer cells of the same type. She indicated that she did not recommend radiation to the spots in her lungs due to their location, depth and potential for damage to surrounding lung tissue. She felt that the area on her arm would be a good candidate if it's size was large enough for the trial and it's accessibility for any necessary biopsy.
Although we were glad to have the appointment, we felt like we had left without a specific plan, some confusion and difficult choices to make.
We spent the next day and a half researching the above subjects as well as throwing the future of PD-1 in the mix in order to make an educated choice (our understanding that a 40% response is currently being seen in trials?) Watching videos from medical conferences, reading medical journals, patient blogs and forums including this one was quite a task and is ongoing. I can easily see how this can consume all of one's time and look forward to the day when I can feel like I'm not thinking about it every moment and returning to a more normal life. Although I feel I have a rudimentary grasp of the information needed for the current decisions to be made I can see how many of you are so knowledgeable, we greatly appreciate your input. As with anything in life knowledge comes with experience, this is one subject I would have preferred to not have much knowledge in.
Wednesday evening Adriana received an email from the Dr. letting her know that it looked like she is eligible to participate in the trial and that she recommend that she do so.
Adriana has decided to take that treatment path with many factors coming in to play in her decision including:
A. Her concerns that she might not be strong enough for the IL-2 treatment at this time due to it's extreme nature.
B. My work commitment (involving travel away from home) during the first 2 weeks of July and the need either to not do that work which is seasonal and an important part of our income or postpone IL-2 treatments until after that point as my undivided support is as we see it as absolutely necessary for the IL-2 treatments vs a somewhat lesser support level necessary for Ipi.
C. The added bonus of the radiation.
D. Potential for PD-1 options should Ipi fail and the understanding that those options are not available until she has failed Ipi.
Although we are concerned about potentially jeopardizing future treatment with IL-2 or any other treatments she feels this is the correct avenue given her current options and circumstances.
Things seem to be moving along as she has been in contact with the co-coordinator and is in the email chain with a new primary medical oncologist, trial medical oncologist and others. She is scheduled to meet with the trial Dr. June 3 and they are going to try and schedule her for additional scans next week. Therein lies the stumbling block in that the insurance will have to agree to the scans and treatment as the trial only pays for the additional necessary blood work. Although I know the insurance would have to pay for the Ipi and it's related treatment costs I am skeptical that they will pay for the scans at this point let alone for the radiation portion given that they have previously denied her original scans as well as her over-nite post surgery hospital stay on first request, requiring jumping through additional hoops. Although I hope that the office is able to overcome these monetary obstacles for the sake of Adriana's health I fear that we are going to be revisiting this difficult decision regarding treatment options and timing.
Best regards to all. Don't forget to live your life.
Rob and Adriana