A Slight Complication...
So on June 11th, I had my long day of appointments. They came with mixed findings and some unknowns. Dr. Burt wanted to have a couple of boards look at my results before a treatment plan was decided on. We were a little anxious to get going with things, especially since my BRAF inhibitor medications seemed to not be working. I didn't want to be going without a viable treatment for too long.
Anyway, on June 13th Dr. Burt called me. She indicated that of the 7 new spots that were seen on my MRI, they believed 4-5 were actually tumors. That would bring the current tumor count to 13 in my brain, 8 of which have already received radiation. My hope was that we could do targeted radiation on the new ones, but Dr. Burt had some additional news. She said that before we moved forward, some additional testing was needed. There was a spot on my MRI that indicated I might have a disease called Leptomeningeal Carcinomatosis. This is essentially a rare complication of cancer where the cancer spreads to the fluid surrounding the brain and spinal chord. Here's a link to more info...
https://emedicine.medscape.com/article/1156338-overview
From what Dr. Burt said and what I've read, it's not necessarily the greatest thing to get. About 5% of cancer patients end up with the complication. The belief is that number is increasing as newer treatments keep cancer patients alive, but that's the number I've been able to find. Left untreated, they say about 4-6 weeks for a prognosis. If its treated, 2-3 months. Now...those numbers appear to be changing, at least for those that receive treatment. Because the disease is so rare, clinical studies on how to treat it are even rarer. However, there are some indications that some treatments may prolong life for up to two years. Most of the positive changes seem to be related to those with breast and lung cancers, while melanoma is still fickle. Who knows...
So moving forward... Dr. Burt said that I needed an MRI, which is the first step in getting a better picture. However, the MRI is a rather special MRI and lasts for two hours. I found out my MRI was scheduled for June 25th (12 days from that time and 2 weeks after my MRI that indicated I may have the disease). I found it somewhat bemusing that my life expectancy was 4-6 weeks without treatment and it would take 2 weeks at least to get the first test done. Oh well... I was able to bump that up to June 24th. Saved myself a day haha If the results of the MRI come back negative, then they will do a lumbar puncture and actually remove some of the cerebrospinal fluid for lab work. Apparently MRIs aren't the most accurate in diagnosing this disease. What I have seen shows they are about 50% accurate, but they are preferred since they aren't invasive. So we will see. If it's negative, we'll do the lumbar puncture.
IF I do in fact have this disease, Dr. Burt said the current form of treatment would be whole brain radiation and a form of immunotherapy.
Still holding...
Anyway, on June 13th Dr. Burt called me. She indicated that of the 7 new spots that were seen on my MRI, they believed 4-5 were actually tumors. That would bring the current tumor count to 13 in my brain, 8 of which have already received radiation. My hope was that we could do targeted radiation on the new ones, but Dr. Burt had some additional news. She said that before we moved forward, some additional testing was needed. There was a spot on my MRI that indicated I might have a disease called Leptomeningeal Carcinomatosis. This is essentially a rare complication of cancer where the cancer spreads to the fluid surrounding the brain and spinal chord. Here's a link to more info...
https://emedicine.medscape.com/article/1156338-overview
From what Dr. Burt said and what I've read, it's not necessarily the greatest thing to get. About 5% of cancer patients end up with the complication. The belief is that number is increasing as newer treatments keep cancer patients alive, but that's the number I've been able to find. Left untreated, they say about 4-6 weeks for a prognosis. If its treated, 2-3 months. Now...those numbers appear to be changing, at least for those that receive treatment. Because the disease is so rare, clinical studies on how to treat it are even rarer. However, there are some indications that some treatments may prolong life for up to two years. Most of the positive changes seem to be related to those with breast and lung cancers, while melanoma is still fickle. Who knows...
So moving forward... Dr. Burt said that I needed an MRI, which is the first step in getting a better picture. However, the MRI is a rather special MRI and lasts for two hours. I found out my MRI was scheduled for June 25th (12 days from that time and 2 weeks after my MRI that indicated I may have the disease). I found it somewhat bemusing that my life expectancy was 4-6 weeks without treatment and it would take 2 weeks at least to get the first test done. Oh well... I was able to bump that up to June 24th. Saved myself a day haha If the results of the MRI come back negative, then they will do a lumbar puncture and actually remove some of the cerebrospinal fluid for lab work. Apparently MRIs aren't the most accurate in diagnosing this disease. What I have seen shows they are about 50% accurate, but they are preferred since they aren't invasive. So we will see. If it's negative, we'll do the lumbar puncture.
IF I do in fact have this disease, Dr. Burt said the current form of treatment would be whole brain radiation and a form of immunotherapy.
Still holding...
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