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.

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.

Latest trip to Charlotte 8/10

Bobby, Dan and I returned from Charlotte on Wednesday.  It was week 48 in the clinical trial....48/60.  More on this in a bit.  I'm sure you want to hear about the scans and any news.  Well, the news is (still) terrific.  The scans showed nothing new. There is still that one tumor that won't budge.  We are talking about melanoma here--perhaps it would be a bit unreasonable to expect EVERY tumor to cooperate?  That one tumor hasn't changed. It is small and it isn't growing-we won't let it take away from the miracle we are seeing.  Bobby hasn't had problems with side effects which is icing on the cake. 

There is a study that was done comparing melanoma patients who received Ipi, Ipi + vaccine, and vaccine only.  The overall survival for the patients in this study was just over 10 months. Since advanced melanoma doesn't offer many miracles, it is hard to even describe with words.

What's next? The next trip to Charlotte is in November.  That visit will be the same as others (scans, labs, Ipi) and that will wrap up the original clinical trial.  Ending that trial with a "COMPLETE RESPONSE" will be the goal...and will hopefully open doors for Ipi to obtain FDA approval.  Ipi has the best outcome of any treatment for advanced melanoma so far.  10-15% of patients do well and those are considered high numbers.  Bobby may be a rare specimen--very special to all of us and to other melanoma patients forever.

Bobby's doctor said that there is no data to tell us what will happen next.  They plan to continue giving Bobby Ipi like he has been getting it over the last year.  When the drug gets FDA approval, there could be some changes but we don't know what those might be.  The future will be what is happening now...and is a definite blessing.

The kids start school on Wednesday.  Summer ended quickly.  We have pictures from our vacation that I'll post soon.  I've been trying to get this update posted since Thursday...getting pictures up will be a work in progress.