I recently returned from S.F. where I sought opinions from two different groups of melanoma specialists regarding adjuvant treatment for melanoma. The first was on Wednesday, Feb. 23rd at the Northern California Melanoma Center. This was pretty much an all day visit. In the morning, I met with Dr. Weber, an Oncologist, who specializes in melanoma with this team of specialists which also consist of an Immunologist, a Dermatologist, an Integrative Medicine specialist, a Surgical Oncologist, Research nurses, etc. After receiving a physical from him and going over my history, diagnosis/prognosis, and some of the treatment options they have available to me, we had a break before meeting with the Director, Dr. Spitler, an Immunologist who has specialized in treating melanoma for over 35 years. She is world renowned for her research and extremely knowledgeable about melanoma and its treatment options.
During the lunch break, my mom and I went and bought a tape recorder so we could tape record these conversations, so that Eric could listen to them when I returned home. We also ate lunch at a Thai restaurant, which nearly made me ill (it was not good Thai food)! All the while we were on “break”, Dr. Spitler and her team met to discuss all the new patients they had seen that day, including me. In that lengthy discussion, they came up with some treatment options that they felt were best for me. In my meeting with Dr. Spitler later that afternoon, we discussed these options and her recommendations. It was both informative and overwhelming. I learned that I am a Stage IIIb melanoma patient, meaning that there is only 1 lymph node involved, macro metastasis. This gives me about a 50% chance of a 5 yr survival and a 40% chance of recurrence. Even though this wasn’t a big shock to me (because I had read it in my research before), it is still always hard to hear this news and prognosis. I have come to the conclusion though that statistics are just that, statistics. These statistics don’t take into consideration a person’s age, health status, history, lifestyle, genetics, etc. I believe my prognosis is greater than these statistics based on all those things, which are in my favor.
In our discussion with Dr. Spitler, we spoke about my treatment options. Her first two recommendations were clinical trials. We had briefly discussed these with Dr. Weber, but went into more detail about them and asked questions. One of the trials, the DERMA MAGE-a3 ASCI trial is a Phase III study of 1300 participants in over 200 clinical sites. It is a peptide vaccine therapy and had promising results in the Phase II study. It works with the body’s own immune system to kill the cancer cells. One of pros of this study is that has less side effects. But the biggest con is that it is a double-blind randomized study meaning there is a placebo. Sure, the placebo is 2:1(meaning for every two patients that gets the treatment, one gets the placebo), but there is still that risk of receiving NO treatment. This obviously bothered me quite a bit, but I knew I needed to consider it.
The other clinical trial available to me was the CTL4-Ipilmumab trial. Results were also promising in previous phases of the study, but were done on Stage IV patients, not necessarily Stage III. Side effects are more serious than the DERMA trial, but still tolerable, especially with medications to combat the side effects and autoimmune diseases that can occur. There is a placebo in this trial as well though, a 50-50% in receiving the treatment. I didn’t have a good feeling about this trial based on that large of a risk, along with possible long-term side effects.
Dr. Spitler’s third recommendation was to do a drug called GM-CSF, otherwise known as Leukine. I had read a lot of stuff about this drug on-line and knew that Dr. Spitler had been studying this treatment on melanoma patients for years. It is an FDA approved treatment, but not for melanoma yet, which means that in order to get it, you have to get your insurance company to cover it (which can often be a hassle). There are some studies using it, but none that I qualify for at the moment. The good thing about this treatment is that has less side effects than Interferon, so it could be an alternative to that drug. But the biggest con to Leukine its effectiveness hasn’t been proven yet, so they don’t have enough substantial data to back it up yet.
Another item we discussed was the correlation of pregnancy and my melanoma. Though there has been nothing proven to show that pregnancy can cause melanoma, Dr. Spitler believes (through her own patient experience and research) that because your immune system is suppressed while pregnant, it is possible that those melanocytes turned malignant during that time. She said that this was a big concern for me, being as my primary tumor appeared while I was pregnant with Carson. She also said that because this event occurred, that I would be at a high risk of recurrence if I got pregnant again. Honestly, I just tried to hold it together after hearing all of this. Eric and I hadn't even considered that we might not bear any more children up to this point, we always wanted and felt that there were more children out there in our family. But the fact is that this news destroyed me. I didn't even want to consider that I might be "done" having children. And even though I know that it is always my choice in the end, that it would be a huge risk to my health, the baby, and of course, for my family if the cancer came back. The rest of the evening I tried not to focus on this news because it wasn't the most pressing matter, but it was hard not to think about it. I just felt a tightness in my throat as I tried to grasp the reality of this.
At the end of this visit, I signed a consent form for my tumor to be tested for the MAGE-a3 antigen in the DERMA trial. We felt that this was a good idea to do now, being as we were in a time constraint to qualify for this study. About 65% of the tumors tested are positive, but again, I wouldn't be sure if I even had this option available until this test happened. My mom and I left the visit feeling informed, yet overwhelmed with so much information to sort through.
The next day, we met with Dr. Kashani at Cal Pacific Medical Center. He and his colleages are also specialists in treating melanoma. I was also grateful to have my dad there as well. Dr. Kashani's visit wasn't quite as long, but still very informative and thorough. He gave me a physical as well, and we spoke about my health history, in particular the melanoma. He agreed with Dr. Spitler about the pregnancy issue (another gulp!). His options and opinions were a bit different than Dr. Spitler's regarding treatment. Dr. Kashani's first recommendation was to do Interferon based on the fact that it is the only FDA approved treatment for Stage III melanoma and I would be GUARANTEED a 10% reduction in recurrence (so from 40% to 30%). Of course, he also concluded that Interferon doesn't extend overall survival, and so it isn't a GREAT treatment option. His second recommendation was the Ipi trial, which I had pretty much ruled out already based on the reasons listed above. The time frame for getting into this trial was even tighter than the DERMA trial, and I felt that there was no way I could make a decision like that in a mere week. Dr. Kashani's last recommendation was the GM-CSF, which he said is showing some promise, but nothing proven yet.
Again, I left feeling overwhelmed and extremely stressed about this decision making process. On top of that, the whole future pregnancy issue was weighing on my mind. I left S.F. knowing that the next couple of weeks would be devoted to research, studying the matter out, and praying over it. This process would be crucial, yet gut-wrenching. At this point, I don't know what to do. I thought maybe something would stick out to me, but I'm not feeling that yet. I think this is going to be one of the toughest decisions I will ever make and I just hope I make the right choice. This will not just affect ME, but my whole family which is my whole world. There are going to be a lot of prayers said these next couple of weeks!
During the lunch break, my mom and I went and bought a tape recorder so we could tape record these conversations, so that Eric could listen to them when I returned home. We also ate lunch at a Thai restaurant, which nearly made me ill (it was not good Thai food)! All the while we were on “break”, Dr. Spitler and her team met to discuss all the new patients they had seen that day, including me. In that lengthy discussion, they came up with some treatment options that they felt were best for me. In my meeting with Dr. Spitler later that afternoon, we discussed these options and her recommendations. It was both informative and overwhelming. I learned that I am a Stage IIIb melanoma patient, meaning that there is only 1 lymph node involved, macro metastasis. This gives me about a 50% chance of a 5 yr survival and a 40% chance of recurrence. Even though this wasn’t a big shock to me (because I had read it in my research before), it is still always hard to hear this news and prognosis. I have come to the conclusion though that statistics are just that, statistics. These statistics don’t take into consideration a person’s age, health status, history, lifestyle, genetics, etc. I believe my prognosis is greater than these statistics based on all those things, which are in my favor.
In our discussion with Dr. Spitler, we spoke about my treatment options. Her first two recommendations were clinical trials. We had briefly discussed these with Dr. Weber, but went into more detail about them and asked questions. One of the trials, the DERMA MAGE-a3 ASCI trial is a Phase III study of 1300 participants in over 200 clinical sites. It is a peptide vaccine therapy and had promising results in the Phase II study. It works with the body’s own immune system to kill the cancer cells. One of pros of this study is that has less side effects. But the biggest con is that it is a double-blind randomized study meaning there is a placebo. Sure, the placebo is 2:1(meaning for every two patients that gets the treatment, one gets the placebo), but there is still that risk of receiving NO treatment. This obviously bothered me quite a bit, but I knew I needed to consider it.
The other clinical trial available to me was the CTL4-Ipilmumab trial. Results were also promising in previous phases of the study, but were done on Stage IV patients, not necessarily Stage III. Side effects are more serious than the DERMA trial, but still tolerable, especially with medications to combat the side effects and autoimmune diseases that can occur. There is a placebo in this trial as well though, a 50-50% in receiving the treatment. I didn’t have a good feeling about this trial based on that large of a risk, along with possible long-term side effects.
Dr. Spitler’s third recommendation was to do a drug called GM-CSF, otherwise known as Leukine. I had read a lot of stuff about this drug on-line and knew that Dr. Spitler had been studying this treatment on melanoma patients for years. It is an FDA approved treatment, but not for melanoma yet, which means that in order to get it, you have to get your insurance company to cover it (which can often be a hassle). There are some studies using it, but none that I qualify for at the moment. The good thing about this treatment is that has less side effects than Interferon, so it could be an alternative to that drug. But the biggest con to Leukine its effectiveness hasn’t been proven yet, so they don’t have enough substantial data to back it up yet.
Another item we discussed was the correlation of pregnancy and my melanoma. Though there has been nothing proven to show that pregnancy can cause melanoma, Dr. Spitler believes (through her own patient experience and research) that because your immune system is suppressed while pregnant, it is possible that those melanocytes turned malignant during that time. She said that this was a big concern for me, being as my primary tumor appeared while I was pregnant with Carson. She also said that because this event occurred, that I would be at a high risk of recurrence if I got pregnant again. Honestly, I just tried to hold it together after hearing all of this. Eric and I hadn't even considered that we might not bear any more children up to this point, we always wanted and felt that there were more children out there in our family. But the fact is that this news destroyed me. I didn't even want to consider that I might be "done" having children. And even though I know that it is always my choice in the end, that it would be a huge risk to my health, the baby, and of course, for my family if the cancer came back. The rest of the evening I tried not to focus on this news because it wasn't the most pressing matter, but it was hard not to think about it. I just felt a tightness in my throat as I tried to grasp the reality of this.
At the end of this visit, I signed a consent form for my tumor to be tested for the MAGE-a3 antigen in the DERMA trial. We felt that this was a good idea to do now, being as we were in a time constraint to qualify for this study. About 65% of the tumors tested are positive, but again, I wouldn't be sure if I even had this option available until this test happened. My mom and I left the visit feeling informed, yet overwhelmed with so much information to sort through.
The next day, we met with Dr. Kashani at Cal Pacific Medical Center. He and his colleages are also specialists in treating melanoma. I was also grateful to have my dad there as well. Dr. Kashani's visit wasn't quite as long, but still very informative and thorough. He gave me a physical as well, and we spoke about my health history, in particular the melanoma. He agreed with Dr. Spitler about the pregnancy issue (another gulp!). His options and opinions were a bit different than Dr. Spitler's regarding treatment. Dr. Kashani's first recommendation was to do Interferon based on the fact that it is the only FDA approved treatment for Stage III melanoma and I would be GUARANTEED a 10% reduction in recurrence (so from 40% to 30%). Of course, he also concluded that Interferon doesn't extend overall survival, and so it isn't a GREAT treatment option. His second recommendation was the Ipi trial, which I had pretty much ruled out already based on the reasons listed above. The time frame for getting into this trial was even tighter than the DERMA trial, and I felt that there was no way I could make a decision like that in a mere week. Dr. Kashani's last recommendation was the GM-CSF, which he said is showing some promise, but nothing proven yet.
Again, I left feeling overwhelmed and extremely stressed about this decision making process. On top of that, the whole future pregnancy issue was weighing on my mind. I left S.F. knowing that the next couple of weeks would be devoted to research, studying the matter out, and praying over it. This process would be crucial, yet gut-wrenching. At this point, I don't know what to do. I thought maybe something would stick out to me, but I'm not feeling that yet. I think this is going to be one of the toughest decisions I will ever make and I just hope I make the right choice. This will not just affect ME, but my whole family which is my whole world. There are going to be a lot of prayers said these next couple of weeks!
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