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November 3, 2012 at 11:33 am #20744SharmonParticipant
Good morning, my name is Brent, my wife Sharon (sharmon) has been keeping you up to date on my status. 5th year out from diagnosis of melanoma, 3rd year as stage 4 primarily in the lungs. Ippi early on for 9 months, a partial round of bio-chemo, all at Moffitt in Tampa, and then off to MDA in Houston for a gsk MEK trial almost 3 years ago. Some early shrinkage and then stable reults for 14 rounds and then some minor growth, enough to move me off the trial. We went onto another MEK trial there that included Alimta, and stability up to this point, another 20 rounds.
As a result of this large tumor in the chest/rib area as well as bone density issues from all the treatment, I have aquired a couple of brooken ribs in the back. ( and they hurt)
We have a wonderful opportunity to return to Moffitt with Dr. Webber on an anti PD1 trial ASAP. So far all of the preliminary test are passed just waintg for him to sign off. A very hard decision to leave a known trial that is stable and go to another that has been working for some. FAITH, is my rock and guiding light that has me in a very relaxed and positive mind set to make this switch, my wife, care giver, BEST friend, all in one is struggling for both of us, is this the right thing to do?
Any feed back on your part would be gratefully apreciated, this has been a tough decision.
I would like to add, our crew at MDAnderson, Oncologist, PA, trial cordinator in the targeted therapy department made all the difference in our success….. Our peace of mind and understanding of this disease and my condition, came from their constant support, feedback, knowledge and obvious concern for our well being. This will be hard to duplicate and really missed. We will keep you up to date on MDA and return if the opportunity comes up.
So any thoughts as to making such a switch would be helpfull and we look forward to passing on the success of this new trial as it happens………November 3, 2012 at 11:50 am #57376Catherine PooleKeymaster
Good to hear from you. I’ve spoken frequently with Sharon and have been on this journey with you for three years on a phone capacity! I remember speaking with you on the phone when you were going through the biochemo. You certainly are equipped with a great team, especially with Sharon.
I remember Sharon saying she thought you were taken of the IPI too soon as you were responding to some extent. That to me says you have a good chance of responding to the PD1. I’m not sure which PD1 you are doing but it is probably either Merck or BMS. The side effect profile is minimal, so that will be good for your energy levels.
Please keep in touch and let us know how you are doing. We’re all rooting for you!
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