Hi everyone. Sorry we haven't posted an update because - as you might have guessed - we have been waiting for news! But the doctor from Memorial Sloan Kettering Cancer Center called Meredith this morning. The three trial phases for Bristol Meyers new PD1 drug Nivolumab have closed BUT they are about to open an extended access program at Sloan Kettering for this drug, and the doctor said that he might be able to get Meredith into that program!! No guarantees until Meredith goes for a screening, but we are excited at this possibility.
Nivolumab is comparable to the new drug Pembro that was just released by Merck. My (very limited) understanding is that it works in much the same way, and while there is no long term research published because these drugs are so new, the researchers are very excited at the initial results of these PD1 drugs in combination with immunotherapy drugs (yervoy). Bear with me, I'm not a scientist. I only know as much as Google tells me.
Again, there is not a 100% guarantee that Mere will qualify to participate in the extended access program. PLEASE PRAY that she will get into this program and SOON. As anxious as I am, Meredith and Vic are 100x more anxious to begin treatment with the best possible option.
One of the doctors that Meredith has seen had suggested that she go ahead and begin treatment (yervoy) and another doctor has recommended waiting to see if she can get into a trial somewhere. Meredith and Vic are still looking into other trials and waiting to hear back from other doctors regarding any possible openings where Meredith can get the yervoy in conjunction with a newer drug (pembro or nivolumab). It is a VERY DIFFICULT place to be for them - trying to decide if they should keep waiting in hopes that she can get into a trial (which they feel is their best treatment option) or if they should go ahead with the option that is open to them now, even if they feel that it may be less effective. Please continue to pray that God would make clear to them which path is the right path and to give them peace during this agonizing waiting period.
A lot of you have been asking about other things regarding insurance and travel/medical expenses, and several of you mentioned that you were having trouble posting comments on here. A good contact email is firstname.lastname@example.org, but I will attempt to answer some of the most frequently asked questions here:
Meredith and Vic do have insurance. No idea how much it covers and probably won't know until she starts treatment somewhere. Do these trials and extended access programs cost money or do the dug companies cover the cost as part of their research? If it isn't paid for by the drug companies, will insurance cover a trial drug treatment? Someone else will have to answer those questions because I have no idea, and Meredith didn't know either.
Right now, their only need is PRAYER. For peace, for clear direction, for a spot to open in a trial, for their properties to sell in Alpine or that they can liquidate some of their other assets.
For those in the west Texas area, you can still sign up for the 5K here: https://www.eventbrite.com/e/fear-nothing-5k-walkrun-race-tickets-13006387455
The same link now has an option to purchase a Team Meredith bracelet - even if you are not participating in the run, you can order a bracelet and someone can mail it to you. IMPORTANT: If you are out of town and want the bracelet mailed to you, you MUST email Liz at email@example.com after you place your order to let her know you want the bracelet mailed to you. 100% of the profits from these bracelets are going to Vic and Meredith's medical fund.
The medical fund has been set up at Fort Davis State Bank in Alpine, Texas. Donations can be sent there
to the attention of Lizeth Ryan
Fort Davis State Bank
PO Box 2021
Alpine, TX 79831
Please just indicate that it is for Meredith Horn's medical fund. Locals can also make donations at the bank at 1102 E Holland Ave in Alpine. You can reach Lizeth Ryan with any questions at 432-837-1888.
Meredith does have a skymiles account. If they decide to start the yervoy treatments, they will be driving back and forth to Vanderbilt. If a trial opens in New York or elsewhere, then they will be buying plane tickets.
They have an appointment at Johns Hopkins on Oct 14 just to see if there are any trials open there. She will see the doctor at Sloan Kettering in NY on Oct 23 to be screened for the extended access program, so they do have two trips planned for next month. They will continue to knock on (or BEAT LOUDLY on) every door that might open to a trial or extended access program as they feel this is their best option for treatment. However, time is of the essence. Thank you for continuing to pray!!