We were excited when our MRF newsletter arrived today! The article that was written is exciting-it is almost as if we are reading about someone else and we are so happy for that patient and his family. WOW, it sounds great--and it is!
Bobby was first diagnosed with melanoma in 2007. At that time, the prognosis was poor and we had few options. Interferon was one option. Interferon is given for one year and it is a year of feeling like crap. The statistics show that Interferon will extend the patient's life by about-one year. One thing that Dr. Sharfman, an oncologist from Hopkins, said to us early in the diagnosis was (regarding Interferon) that even though you lose a year to gain a year, "WHAT IF that is the year that a treatment is found to control melanoma?" Bobby chose to enter a clinical trial with the hope of better results than Interferon could promise. We never lost hope that this might be the year that they find a treatment that works. Ipilimumab was not offered to Bobby in 2007 or 2008, but by 2009 it was at the top of the list as the next drug to be approved to treat melanoma. That was the year we needed. In 2007, we didn't even talk about what we might be doing in 2010.
The FDA was supposed to review and hopefully approve Ipi by the end of this year. We were disappointed to hear that this approval date has been pushed into 2011. This is a pretty good article that talks about Ipi and its future - Ipilimumab The brand name for Ipilimumab will be called Yervoy after FDA approval. I found another article which was interesting: Yervoy
Our hope for 2011 is that it will become that year which so many melanoma patients need.
Sunday, November 21, 2010
Tuesday, November 2, 2010
Today's Visit (11/2/10)
Well, I have planned on writing this all day--and now, it is after 10. Bobby and I had a nice dinner at a restaurant that we remembered from a few visits back. We had a nice (hint) celebratory dinner together-with some awesome steaks.
The results today were nothing showing, nothing new...with a bit of a bonus. We asked Dr. Amin about that one, stable, 6mm tumor that hasn't been changing - we assumed it was just stubborn. Dr. Amin said that he could not say it was or wasn't melanoma without a biopsy AND that he wasn't willing to open Bobby's chest to find out. So, we will assume that since it hasn't grown, it hasn't shrunk, and it didn't disappear or change like the other melanoma tumors that it is probably not melanoma. It could be a granuloma or scar tissue. Neither are related to melanoma or are concerning. This news is better than I can put into words. Having assumed that there was one tumor still "in there" was like having one rotten potato in the basket. By taking that one tumor (NT4) out of the equation, the CT scan shows NO CANCER and the doctor said it would be read as negative.
As the news spread quickly, Bobby didn't seem as ready to celebrate. The roller coaster ride doesn't always leave you feeling thrilled. It isn't so easy to believe what you are hearing when the statistics for melanoma have been poor. This truly is unbelievable and is as good as it will ever get.
The results today were nothing showing, nothing new...with a bit of a bonus. We asked Dr. Amin about that one, stable, 6mm tumor that hasn't been changing - we assumed it was just stubborn. Dr. Amin said that he could not say it was or wasn't melanoma without a biopsy AND that he wasn't willing to open Bobby's chest to find out. So, we will assume that since it hasn't grown, it hasn't shrunk, and it didn't disappear or change like the other melanoma tumors that it is probably not melanoma. It could be a granuloma or scar tissue. Neither are related to melanoma or are concerning. This news is better than I can put into words. Having assumed that there was one tumor still "in there" was like having one rotten potato in the basket. By taking that one tumor (NT4) out of the equation, the CT scan shows NO CANCER and the doctor said it would be read as negative.
As the news spread quickly, Bobby didn't seem as ready to celebrate. The roller coaster ride doesn't always leave you feeling thrilled. It isn't so easy to believe what you are hearing when the statistics for melanoma have been poor. This truly is unbelievable and is as good as it will ever get.
Bobby will continue to get scans every 12 weeks. As that time gets closer, we will again hold our breath. Melanoma never burns its bridges. We are able to keep the gates closed but can never be guaranteed that it will be gone forever. Melanoma is an ugly beast and can show up anytime-any time....till death do us part. If it is only just today, then, today he is cancer-free! We'll never hear better news than this.
Bobby says, "You are never CURED from melanoma, it is just under control."
In this path we are making, Bobby is a pioneer. A great friend who has melanoma says that Bobby is a beacon for others to look toward. This is something that every person suffering from melanoma needs.
Last but not least, we want to say, "Thank you!" to all of our friends, family, and coworkers who have helped us so much. We need you (and a healthy dose of Ipi) to get us through. Goodnight, Bobby & Donna
We would also like to say THANK YOU to our kids. Lindsey, Julie, Dan: We couldn't do this without you being as helpful and mature as you are. We appreciate it. (And the grandparents for stepping in while we are gone). Love you all.
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