Friday before Memorial Day we were at MD Anderson getting Bennie's scans done to see how the Zelboraf is working. This was our first scans since starting the Zelboraf so we were very anxious. We knew that the tumor on his hip had shrunk, but we were unsure of how the lungs, liver, and bone mets were doing. We were forced to wait the entire weekend, plus Memorial Day before we could find out results. We kept busy by having a very nice weekend and enjoyed our time as best we could! Tuesday morning we went to MD Anderson and got the fantastic results that Zelboraf is working magnificently!!!! Pretty much everything that were on the last scans were hardly visible, except for a spot on his liver, and some of the bone met on his hip. The grapefruit (or larger) sized tumor on his hip almost completely disappeared. The Dr.'s were very pleased and didn't suggest doing biochemo because of his fantastic response. Before going into this appointment Bennie and I had decided that if there was any measurable disease on the scans that we would attempt to try and get into a very promising clinical trial going on at Sloan Kettering in New York. It is the most promising treatment occurring in the melanoma world right now, and has the best chance for a long term response. However, since there is no measurable disease at this time... we can't get into any trials. So our decision was clear that we will just keep on keeping on with this drug, and hope that the response is a lot longer than the average life span of this drug which is around 6-8 months.
We were so relieved to hear this news. In other exciting news for the melanoma world two new drugs for the treatment of melanoma were approved by the FDA today! One drug could potentially be added to Bennie's current drug to help with resistance, but really hasn't been tested with it. Also, it would have to get approval from insurance being a new drug.... and without insurance its about 8000 dollars a month! The quicker melanoma patients are given more options the better, because this cancer is nasty and takes people so quickly. The one we are most anxious about is Anti-PD1 and is about one to two years away from FDA approval. So hopefully the drug Bennie is on now can keep working until more treatments are approved, and researchers know more information on the best way to attack melanoma!
We couldn't have had a better visit yesterday, and are very happy to have good scans as well as confidence for moving forward in our current treatment. We will be back at MD Anderson in about 8 weeks for more scans, and probably a little before that for blood work.
At least the summer should be relatively "normal" around here, minus Bennie looking like he is dressed for winter as he is hiding from the sun! Thank you for everyone's continued prayers! We are still praying for Bennie to continue to respond super to this medication, and his cancer will be gone! In the words of Phil Robertson... we are Happy, Happy, Happy!!!
Wednesday, May 29, 2013
Wednesday, May 15, 2013
Melanoma Awareness
Hi Everyone,
This is Bennie posting for the first time since this site was created. I just wanted to post on a couple of things that have happened this month. We found out that the brain MRI came back clear which is very good. This keeps me open for many clinical trials.
The pill ( Zelboraf) I am on has shrunk the tumor on my hip to the point were I can't feel it anymore. Which is awesome. We go for another CT scan next week on May 24th and find out the results on the 28th. I hope that it is doing the same to the other areas within my body as it has on my hip. So far the Zelboraf side effects haven't been to bad. I feel like an old man with arthritis that travels around my body. I also can't go out in the sun for more than 15mins or I get really sunburnt. My hair keeps shedding like a dog. Overall these side effects are nothing compared to the high dose IL2 treatment I did before.
On May 6th it was Melanoma Monday which is the first Monday of May. I want to thank all the people that supported me and all my fellow Melanoma fighters. It was great to see everyone wearing black in support of Melanoma awareness. In light of Melanoma awareness this month another blog Addison's Army has decided to post a story everyday for the month of May in hopes to raise awareness of Melanoma. Addison's Army is about a mother that found out that she had stage IV Melanoma shortly after giving birth to her daughter. The doctors told her it was very rare for cancer to transfer from mother to fetus and not to worry. Well in this case the cancer did transfer to the fetus and now the mother and child both have Melanoma. The mother passed away in February of 2012 and Addison keeps on fighting. My story has been highlighted on their site along with many others. If you want to shed some light on the dangers of protecting your skin from the sun and tanning beds then I urge you to read some of the stories.
Here is a link to Addison's blog http://addisonsarmy.org/
Here is a link to my Story on Addison's blog http://addisonsarmy.org/bennies-story/
This is Bennie posting for the first time since this site was created. I just wanted to post on a couple of things that have happened this month. We found out that the brain MRI came back clear which is very good. This keeps me open for many clinical trials.
The pill ( Zelboraf) I am on has shrunk the tumor on my hip to the point were I can't feel it anymore. Which is awesome. We go for another CT scan next week on May 24th and find out the results on the 28th. I hope that it is doing the same to the other areas within my body as it has on my hip. So far the Zelboraf side effects haven't been to bad. I feel like an old man with arthritis that travels around my body. I also can't go out in the sun for more than 15mins or I get really sunburnt. My hair keeps shedding like a dog. Overall these side effects are nothing compared to the high dose IL2 treatment I did before.
On May 6th it was Melanoma Monday which is the first Monday of May. I want to thank all the people that supported me and all my fellow Melanoma fighters. It was great to see everyone wearing black in support of Melanoma awareness. In light of Melanoma awareness this month another blog Addison's Army has decided to post a story everyday for the month of May in hopes to raise awareness of Melanoma. Addison's Army is about a mother that found out that she had stage IV Melanoma shortly after giving birth to her daughter. The doctors told her it was very rare for cancer to transfer from mother to fetus and not to worry. Well in this case the cancer did transfer to the fetus and now the mother and child both have Melanoma. The mother passed away in February of 2012 and Addison keeps on fighting. My story has been highlighted on their site along with many others. If you want to shed some light on the dangers of protecting your skin from the sun and tanning beds then I urge you to read some of the stories.
Here is a link to Addison's blog http://addisonsarmy.org/
Here is a link to my Story on Addison's blog http://addisonsarmy.org/bennies-story/
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