Care/Treatment options

Sorry for what you have been dealing with.  It sounds like you are pretty well versed in your treatment options.  Here is a primer I put together, that may (or may not) offer a bit more helpful information:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

I do feel that a melanoma specialist is the best option and that has always been my recommendation.  I traveled to Tampa from Chattanooga for 2 1/2 years in order to attain my treatment from 2010 to 2013.  However, that time frame, esp compared to today, is significant.  As immunotherapy and targeted therapy esp when both are combined with radiotherapy have become recognized as the standard of care for Stage IV melanoma…the world of melanoma treatment has come a world away from where it was in 2010 when NONE of the current FDA approved treatments for melanoma were so.  As they have become FDA approved, more utilized by experts and then by local oncologists….the entire community has become better versed in the fact that they exist, should be used, how to administer them, as well as how to recognized and treat side effects.  So….if your onc/radiologist/surgeon are willing to work together and seek help from melanoma specialists, who are relatively nearby compared to great swaths of the country, you are probably in good hands as long as you remain your own best advocate and seek additional info as you need it.

Hope this helps.  I wish you my best.  Celeste

Hi Rich,

I drive every 3 weeks 7 1/2 hours to my Melanoma Specialist.  I have done so since August of 2017.  I tried just having scans done in my hometown and it was such a hastle making sure records were sent where they needed to be that my wife and I just drive the 7 1/2 hours for everything needed.  It also helps that everything is at one place for us as far as consistency with how the scans are done and read. It is alot, but we try to make go to dinner or stop somewhere fun on the trips.  Of course, we do not have little ones at home which would make a big difference.  Best wishes in your treatment decisions.

Vince

I have been treated for melanoma at Sanford Roger Maris Cancer Center in Fargo and at the Mayo Clinic in Rochester.   I walk to Sanford Roger Maris;  the Mayo Clinic is a 6 to 7 hour drive.   Dr Anu Gaba has been my oncologist since September 2014.  At Sanford Roger Maris she treats patients with many kinds of cancer.  I knew her from running, before I needed an oncologist.  I had SLN biopsies at the Mayo Clinic in 2008 and 2014 and was in a clinical trial there in 2015.  After being diagnosed with stage 4 melanoma in August 2015 I have been treated at Sanford Roger Maris. Dr Gaba conferred with my Mayo Clinic oncologist Dr Zhang, when deciding on my treatment plans.  Driving to Rochester every 2 weeks for immunotherapy would have been difficult especially in winter.  I am pleased with the care I have received locally.  I feel well and took a break from immunotherapy for eye cataract surgery on August 13 and  today.

My wife was also diagnosed as Stage 4 with two brain mets just about one year ago.   She had the larger one removed surgically then had gamma knife on the other one and on the resection cavity.   She has been on ipi/nivo and now nivo for about a year, and is currently NED.

She sees Dr. Hamid down at Angeles Clinic as her melanoma specialist, but she has all her immunotherapy infusions and scans done locally to home.   The local oncologist and Dr. Hamid discuss her via email, and we only have to drive the 3 hours plus down to Angeles every 3 months to review her scans and discuss ongoing treatment.   This is much more convenient and has been working well.

If the melanoma specialist at the remote location will communicate with a local medical oncologist who will do your routine exams, labs, infusions and scans, that works great for us.   Good luck to you.

I receive Opdivo every 2 weeks 10 minutes from my house but fly to Houston MDAnderson to melanoma specialist every e months. We tried having scans done locally but after the docs here interpreted scans differently than they did at MDA, it was decided to have them done at MDA. Very inconvenient but I’d rather have the people who see melanoma every day read the scans, make the treatment plan and cut out the mel when need be. Infusions are the same here or there but the rest is not, in my experience.