Friday, September 26, 2014

Waiting on Trial / Your Questions Answered

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, 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:

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 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!!

Tuesday, September 23, 2014

An Update from Meredith....

Dear friends:

How do I begin to thank you for standing with us in this battle? God has been so kind to us, as evidenced by all of you, praying, fasting, giving. Each and every one of your prayers, thoughts, messages, letters, gifts and calls have been precious to us – it has sustained us these past few weeks. We are completely blown away by your overwhelming support and encouragement.

The past few weeks we have been getting settled in Mississippi while we wait, wait, wait on the best treatment opportunity. We’ve been visiting with several wonderful doctors, and they all recommend we wait a little longer on a trial where we can take the PD-1 drug in conjunction with another immunotherapy drug. When taking the PD-1 in conjunction with another drug, as opposed to taking them in sequence, twice as many people respond to the therapy. So, as you can imagine, these trials stay full, and if a spot does open, there are many people clamoring for that spot.

Our doctor at Vanderbilt has found a possible trial opening at Sloan Kettering in New York. They are calling us today to set up a consultation to see if we meet the qualifications for the trial. Believe me when I say that NO ONE is more ready to start treatment than I am. The waiting is agony! But, we trust our doctors, and they have all said that my disease appears to be growing slowly, and we should wait, even if it takes several weeks, to try to get into a trial. And so we wait! But while we wait, we are pursing other trial options and beating on every door of opportunity.

We will hear about this trial TODAY, so look for another update this evening, and please pray with us that they will have a spot for us.

This month has been a roller coaster of emotions, but we are holding up well. In the midst of this awful situation, there is much to be thankful for. We are still thanking the Lord for a clear brain scan. Huge praise. (Thank you all for praying!!!!) We are thankful for medical research - there were no viable treatment options for my disease just a few short years ago, and now there are some promising therapies! We are thankful that He has given us friends and a support system like you, who are standing in the gap for us. Believing for my healing, and praying for our strength when we are too overwhelmed and weak to believe and pray for ourselves.

Another huge praise is that I am still feeling well. That’s the craziest part of this disease. It can kill you within a matter of months, yet, if you saw me today, you’d never know I had this battle raging within me. I am SO thankful that for the most part, I still feel well. I can still get up every day and play with my children, cook dinner, enjoy my family. I’m so thankful for that.

Right now, keeping the fear at bay is my biggest challenge. A friend sent me an article last week written by a lady who survived thyroid cancer, and she said something that really struck me. “Cancer is not terminal. Life is terminal.” Is that not so true? Life is terminal. There is no way to describe what it’s like to be faced with your mortality in terms of months. Months. Not years. But the truth is, all of our days are numbered and each day is a gift. Whether we have days, months or years to live, it’s all a gift. It’s all grace.

As hard as this is to walk through (and y’all it’s SO HARD), I know that God has a plan and purpose in it. In all the pain, the grief, the doubt… He has a plan that is meant for my good. He is certainly bigger than this battle, and that is where we anchor our hope. And hope does not disappoint!

We have a long, hard road ahead. But we can face it knowing that He is with us every step of the way. He promises that He will never leave or forsake us. His mercies are new every morning. He hears every prayer and every plea. And oh how he loves us.

We thank you again for the continued prayers and support. We covet them!

I can’t wait to see our Texas friends at the Fear Nothing 5K in Alpine October 5. I hope to be well enough to run (jog) it with all of our awesome friends who are running. It will be a great weekend!

Love you all,

A passage that has helped me this month: Psalm 20[a] For the director of music. A psalm of David. 1 May the LORD answer you when you are in distress; may the name of the God of Jacob protect you. 2 May he send you help from the sanctuary and grant you support from Zion. 3 May he remember all your sacrifices and accept your burnt offerings.[b] 4 May he give you the desire of your heart and make all your plans succeed. 5 May we shout for joy over your victory and lift up our banners in the name of our God. May the LORD grant all your requests. 6 Now this I know: The LORD gives victory to his anointed. He answers him from his heavenly sanctuary with the victorious power of his right hand. 7 Some trust in chariots and some in horses, but we trust in the name of the LORD our God. 8 They are brought to their knees and fall, but we rise up and stand firm. 9 LORD, give victory to the king! Answer us when we call!

Wednesday, September 17, 2014

Fear Nothing 5K

Time to sweat it out for Mere! For those of you in the Alpine area (and those of you willing to travel!), some of Meredith's friends have organized a 5K to help raise money for her medical expenses.

Please visit the link above where you can sign up to run, walk or crawl to the finish line. It's on Sunday, October 5, in Alpine, TX. Meredith and Vic will be there to participate in the event and are looking forward to visiting with as many of you as possible while they are there.

Sunday, September 14, 2014

Appointment at Vanderbilt

Meredith and Vic had a great meeting with another doctor at Vanderbilt on Friday. He was very encouraging in that her cancer seems to be very slow growing, and he seemed to think that researchers are getting close to finding a cure for melanoma! That news alone made my day. This doctor knew of another trial going on in Boston, and he should let them know by Wednesday if Meredith can get into that study. The Boston trial is studying Pembro along with another new immunotherapy drug that I don't know the name of.

For those of you who've been following, Meredith's tumor did test positive for the BRAF gene, but the doctor at Vanderbilt recommended they wait before trying any BRAF inhibitors as those can be accompanied by a host of unpleasant side effects. For now the priority is getting into a trial where she can get the combination of Pembro and and an immunotherapy drug. Second option is to just start the yervoy if she can't do a trial.

Just wanted to update everyone that Meredith and Vic are doing well and remain encouraged by this news and by all of the support you are pouring out on them. As always, we are very grateful!

Monday, September 8, 2014

Brain scan clear!!!

Meredith just got the final report from the radiologist who read her MRI results. Her brain is clear and cancer free!!! We are so grateful for all who prayed and especially grateful to God for such wonderful news!

We had a fantastic service at our church yesterday, and I know all of my family members who were in attendance came away feeling so encouraged. We appreciate all of you who were a part of that. God is strengthening our faith and helping us to trust in Him each day.

Meredith and Vic are on their way home to Mississippi where they will stay for at least 12 weeks while Meredith receives treatment. They will make decisions early this week regarding where she will get treatment, and of course we will continue to keep you updated here. Today we hope you will celebrate with us and take some time to thank the Lord for this wonderful news.

Friday, September 5, 2014

Preliminary results promising!

We didn't get official results today from MRI, but the radiologist who initially glanced over the scans said there were NO LARGE MASSES on her brain. Praise the Lord! We are grateful as always for all of your prayers and covet your continued prayers as we await the final results to be sure there aren't any small spots hiding anywhere in there. We hope to hear some good news early next week, but we are very pleased with this news and very hopeful that we will receive more great news soon.

Several people have asked about the FDA's approval of Keytruda (pembrolizumab - some of you may have hear us discussing "pembro" - this is the same drug. I'll try to stay with the name Keytruda but may forget and say pembro) which happened yesterday, well ahead of the Oct 28 deadline we were expecting. This is another reason to celebrate.

The biopsy from the largest of Mere's three lung spots was sent to the Mayo clinic to be tested for the BRAF gene; those results will affect treatment slightly. I'm still learning about all of this, but what I understand is that there is about a 40-50% chance it will test positive for BRAF, which means it is likely to shrink with treatment of BRAF inhibiting drugs. She will still very likely start the Yervoy treatment next week, possibly with a BRAF inhibitor depending on test results.

Here's the catch with keytruda: It has been approved only for patients who aren't responding to other drugs. She has to finish 12 weeks of treatment on Yervoy before she can begin the Keytruda. The Keytruda is a very promising drug which is actually the same one being studied in the clinical trial we were hoping Meredith would get into. A spot may still open for her to join the study, which would be ideal because in this study, patients are taking the keytruda along with the yervoy. So if she gets into the study, she won't have to go through 12 weeks of yervoy first - she would get the keytruda immediately and simultaneously with the yervoy. Many people believe the combination of the two is most effective.

Meredith said she feels like there is an army behind her, fighting for her. She said she is overwhelmed and humbled by your outpouring of support so once again THANK YOU! She will be posting here soon.

Now we wait for MRI results

Thank you to all who were fasting and praying this morning! We so appreciate all the encouragement we have received even just this morning! I've just heard from Meredith that she is finished with her MRI. We have no idea how long it will take to get results, but I will definitely post here as soon as we get the good news!

In every high and stormy gale, my anchor holds within the veil

Listening to this while I pray for Mere this morning!

Wednesday, September 3, 2014

Treatment Plan

Thank you again so much for your prayers!! Still our biggest request is for Meredith's MRI to be clean. The MRI is scheduled for Friday Sept 5 at 10 am. For so many reasons, we need this to come back all clear. Selfishly, I'll also request prayer that we get results back SOON as it always seems to take a few days for what seems like results that should be read right away - but maybe I'm just impatient.

There are still a few ifs/whens to be determined regarding exactly which kind of medicine Meredith will be taking and where she will get it. There is a very promising drug still in trial stages but soon to be approved by the FDA. They are testing it at UCLA, but currently no spots are available for Meredith. There is a possibility that a spot may open up at the end of this week, but Meredith's brain scan must be clear in order for her to be eligible to participate. Again, this clinical trial is the only way to get this new medicine until the FDA approves it (which will hopefully happen this fall). Again, PLEASE PRAY for MRI to be all clear on Friday.

Even if she doesn't get into this clinical trial with the new drug, there is another drug available now that has had success in slowing the growth of metastatic melanoma. It is called Yervoy. Several people have asked about chemotherapy, but that is not really effective against melanoma and not an option for Meredith. From what I understand, the yervoy has a pretty low occurrence of miserable side effects, so that is a plus! The yervoy can also be taken in conjunction with the new drug that will hopefully be approved this fall.

Until yervoy was approved three years ago, there was no drug effectively treating melanoma, so we are thankful for new developments! The prognosis for metastatic melanoma is not good - doctors say 14 months on average. We know statistics apply to the masses and not to individuals, and the doctors are encouraged that her masses have been slow to grow and she is still feeling very well. We also know that the Maker of heaven and earth holds Meredith in His hands, and there is no bigger comfort than that. He doesn't care about statistics and can do anything He wants.

Starting next week, Meredith will go every three weeks for treatment. She will go either to UCLA (she will definitely go there if she can get into the clinical trial) or possibly somewhere closer to family in Mississippi to get yervoy treatments. It is an IV drug, so she can go get a treatment in a day and then return home after that. After four treatments (12 weeks), she will have another scan to see how she is responding to the medicine. The doctors hope that this medicine will shrink the existing spots and prevent any new spots from occurring. Wouldn't that be a wonderful report to have at Thanksgiving??

For now, please continue to pray. Most pressing issues:

1. Clean brain scan!! MRI Friday at 10 am.
2. For Meredith to get into clinical trial
3. For her body to respond to treatment

Again, THANK YOU THANK YOU THANK YOU for your prayers! We will update again whenever we have MRI results.

urgent prayer request

Meredith saw her doctor this morning, and I will post a full update later today, but there are two urgent needs for prayer that we wanted to go ahead and put out there:
1. Clean brain scan. Meredith will have MRI tomorrow and we are praying that the melanoma hasn't spread there.
2. That she can get into a clinical trial study at UCLA . There is a promising new drug being tested at UCLA but there aren't any spots available. There is one person who is in line ahead of her who is waiting on results from his scan. If his scans are clear, Meredith may be able to get his spot in the study.

Will post full update later.  Thank you for your continued prayers!!!!

"We feel the prayers and the comfort that can only come from Christ"

This is what Meredith sent to me via text yesterday. "We feel the prayers and comfort that can only come from Christ."

Wow. The outpouring of love and support has been amazing! Thank you all so much for the calls, texts, emails and comments. I spoke with Meredith yesterday, and she said she has been so encouraged and overwhelmed by all of you who have reached out to her and other members of our family. We feel your prayers and are very grateful to be surrounded by such a wonderful community of believers who are lifting up Meredith in prayer daily. THANK YOU!!!

Meredith and Vic will see her doctor today, and I will post an update as soon as I hear from them.