Doctor's Orders

Today is Bobby's first day back to work.  He has been off for the last 18 months while fighting this battle against melanoma.  With the help of family, friends, many doctors, science & technology, many other melanoma patients, and through our prayers he has been healed. 

Beating Stage IV melanoma is not something you have heard very often.  In the past, it was next to impossible.  When Bobby was diagnosed in 2007, we knew the numbers and although we tried not to focus on them, the poor prognosis was hard to ignore.  Today, we are resetting the standard.  Melanoma is being treated and patients are seeing improvement.  This is 2010 and we hope that as new drugs continue to be developed, the previous numbers will be irrelevant.

Bobby continues to receive Ipilimumab every 12 weeks.  The future is uncertain.  What we learn from patients like Bobby will be the new standard.  The doctors don't know how to proceed, so they will continue with the same treatment he has been getting. 

Bobby has always been a great teacher, a leader and a role model.  He continues to keep his desire to help others and is doing this with such strength and honor.  Today is what it is all about. 

LET'S GET OVER THIS CANCER AND GET ON WITH LIFE!

Melanoma Research Foundation Newsletter

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.

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.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            

Vacation 2010

Our Summer Vacation is underway! This year, we are southbound--to Southwest Florida!  I know that Florida doesn't seem very far but it will have taken us 3 days and many stops along the way.  Our first night was in North Carolina.  We found a campground to stop into for the night.  I'll post pictures as soon as I have a computer that will let me post them.  It was--interesting, if not amusing.  Definitately an experience.  Pictures are worth 1000 words.
 the
Day 2-We visited our friends in Wake Forest, NC.  That was a great visit with the Nanni family.  Cindy fed all of us-and we are very lucky to have great friends.  We wish they still lived next door--we miss having great neighbors--at least on one side.  We had a great day--and then headed back to our campsite in a state park.  The park makes it very clear that the gates close at 9PM--be in before 9 or you can't get to your campsite.  We made it in by 9--by about 10 minutes.  The park was huge but I bet there were only 20 campers there--it was very dark, very quiet, and very close to a big lake.  The night went well.

We brought one cat with us.  Lexi needs medicine 2x/day.  She is travelling well and seems to enjoy the attention she is getting.  We have her in the camper and the air conditioner is running via the generator (in the back of the truck).  We are taking frequent breaks and checking on her often. 

We are now enroute to Brunswick, GA.  We have a mobile hot-spot via Julie's phone--YAY!  I love having internet while on the highway!  Bobby is doing a terrific job driving--we are pulling our 32 foot 5th wheel--and have all of our stuff with us.   Gonna post this for now...stay tuned for more adventures!

Tumor Log

This is Bobby's most recent 'Tumor Log'

I have to say...this is a miracle--and true evidence that it can happen.  When you look at this, know that it has happened because of YOU...the prayers, the support, the clinical trials, the patients that have suffered and died from melanoma, the love, work--and effort of endless people.  It speaks for itself--and we say, "Thank you, and we love you!"

A great video about Bobby's treatment

This video describes the treatment that Bobby is getting...it is pretty interesting.  The physician who is speaking in the video, Dr. Lynn Schuchter is from  UPENN.  She is talking about the Ipilimumab (Ipi) that Bobby has been getting.  Great news...that we kind of knew already.

Life is pretty normal here.  Trying to raise 3 teenagers, a herd of cats, keep the house clean, work, garden, sleep.  Eating ranks pretty high up there too.  Bobby's next scans are in early/mid August.  I want to scan or re-create the tumor log from his visits.  I will work on that--and post it.  Now that is something to share!!!  It puts all of this into perspective.  Bobby is tired and feels run down but that is really the only side effect he has had from this medication (and fighting off cancer)...he has a right to be tired!  He's trying to slow down the pace and listen to his body. I listen too and don't hesitate to tell him what I hear. 

We've been busy lately and posting has been sparse.  I will try to keep up and will try to check the emails more often to catch up on messages.  We hope your summer is starting off well.  We'd love to hear from you.


Promising News About Immunotherapy from Patient Power® on Vimeo.

A bit of good news...from the 2010 Melanoma Conference (ASCO)

Conclusions: In patients who progressed following an initial
response to the induction course of therapy, the disease control rate in
the ipilimumab arms was 65%-75% compared to 0% in the gp100 arm upon
re-induction. These findings may have implications for the use of
ipilimumab therapy in the long-term management of advanced melanoma.... (Ipilimumab is the drug Bobby is getting in the clinical trial)

Our apologies for the delay...

Here is a brief update-I'll chat more when it isn't so late. We love you all and, to be honest, many of our friends and family are getting instant updates via Facebook. I'll try to remember to post to the blog too.

Anyway, we just returned from Charlotte last evening. Bobby had scans, blood work, and a dose of medication. The day was a mess. Bobby tried to help the nurses out so he want down to the lab for his blood draw. That really messed up the nurse's plan for the day. The lab messed up the tubes...and it all went downhill!

Bobby's scans look great! He originally had abut 6 tumors that they were measuring. Tumor 1, 2, 3, 4, & 6 are gone...not a trace. However that one tumor # 5 is hanging around. The good thing is that it is NOT growing either! We are sooo blessed. Bobby is feeling pretty well-he gets tired easily and doesn't have the stamina he used to have. We're ok with that. He hasn't really had any side effects. He has been very fortunate as there could be side effects that are nasty.
Everyone else here is well. We're busy with kid stuff, teaching Julie to drive--earning our parenthood badge. We made it through Lindsey but, this one is just different. Dan is well-he is dragging through school (which is almost over!!) We go back to NC in August (12 weeks) for the next dose.
We send love to everyone...and thank you for checking in. Please email or call if you want to say hello. We're here-we may be napping, gardening, enjoying life while we can. Love to all, D & B

May is Melanoma Prevention month...

Tanning Is Out, Your Skin Is In (60 seconds) from Amy Mason on Vimeo.

Current Report

We're spending our day at the cancer center. Bobby got up early and came over for his scans. It was very sweet for him to let me sleep in.  After the scans, he came back and we had a nice breakfast in the hotel. We came back over for his appointment with Dr. Amin and to get today's dose of the Ipilimumab. He is getting that now.  Everything has gone well.  There were no changes on Bobby's CT scan.  The doctor said they look the same as they did last time.  We'll take that!  We also don't have to come back for 3 months-we'll take that too!  Bobby is tired-he did all of the driving yesterday. We were up late and he was up early. He just grabbed a little cat nap but this place is very noisy.  I thought he was going to strangle the one nurse...big mouth!

So, we're very happy with the results we getting.  Bobby is tolerating this drug well AND it is working!  We're very thankful and blessed.  Thank you for checking in-we love you all!

Cut and Paste...

The news today--is just as terrific as the news I had to share 4 weeks ago! I could cut and paste the entire post from last time.  Well, all of it except the part about the kids because, unfortunately, we didn't bring them along this time.{{wink}}

Dr. Amin again showed us the scan from today and compared it to the scan from 4 weeks ago.  There is only ONE tiny speck of a tumor remaining in the left lung.  Dr. Amin looked for the other tumors and they aren't there.  It is as if God took a pencil eraser and just erased each spot.  Miracles DO happen.  We are thankful for more than the regression, we are thankful that Bobby has been able to tolerate the drug, he has been healthy, the side effects are minimal, and he is able to continue receiving the medication. Along the way, there have been many hurdles that he has made it over.

Bobby will get another CT scan, labs, and a dose of the drug in 4 weeks. After that dose, the time period changes to every 3 months. We will need to see what happens over the next year regarding this drug. It is expected to get FDA approval soon which means that it will be available to others. Melissa said that when the drug does get approved, it may be available only at certain specialized cancer centers. Bobby told her that he would still want to come to Charlotte as long as he gets to see her. We've loved coming to Charlotte (from years in the past) but now, history has been made here. Hopefully, for many, many years to come, people will continue to benefit from this drug. We want to have success stories from others with melanoma.  Perhaps this is the year that the statistics will start to change!