Started new UCSF clinical trial

Madeleine’s Blog

October 28, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

Madeleine was accepted into the UCSF clinical trial on Wednesday, and began taking the new trial drugs on Thursday. She has to take them early in the morning, on an empty stomach, and so at first she was having quite a bit of difficulty (she could get the pills down...but they sure didn't want to stay down!). She seems to be doing better with this now - using her determination and an adjustment in her anti-nausea medications.

In general, Madeleine has been more tired and weak - which is really hard for someone who is so used to being active. Some of that is the result of needing to be on medications for pain, taking new medications, and having a reduced appetite - along with low hemoglobin. She is working to concentrate all her efforts into fighting cancer, keeping up her appetite, and trying to stay on top of the symptoms she is experiencing.

Last week, Madeleine received a nice package in the mail from her NIH doctor, Dr. Payabyab, along with a very kind note. Dr. Payabyab came out to San Francisco last weekend to run in the Nike Women's Marathon and was presented with a "finisher's necklace" from Tiffany & Co. at the end of the race, which she sent to Madeleine. What a blessing to receive such a nice note and gift. Dr. Payabyab has been very helpful in follow-up since Madeleine finished treatment at NIH - she has continued to respond to email questions, which has helped us bridge the gap while waiting to get started with this next treatment.

Lots of appointments this week! Today, we went down to UCSF for an exam, and then tomorrow we will be there again for an ultrasound-guided biopsy of her neck that is required by the trial (it wasn't possible to schedule both on the same day). Then Wednesday afternoon is an appointment with Madeleine's local oncologist, Dr. Andersen.

Please keep Madeleine and her family in your prayers - thank you so much for all of your support and concern.
 

Happy Birthday!

Madeleine’s Blog

October 17, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

Just a quick post to let you know that today is Madeleine's nineteenth birthday! :)

Here she is earlier this afternoon with her good friends, Dave and Cindy, who brought over some balloons to the house to help in the celebration!

(Madeleine's appointment with UCSF has now been set for Wednesday, October 23rd. Thank you for your continued prayers!)

Seeking out the next step

Madeleine’s Blog

October 13, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

This has been a hard week for us as things have shifted a bit, and Madeleine is having to deal with pain and daily fevers associated with the cancer. In the midst of this, we have been looking to find the best way to proceed in this ongoing battle. 

While we were at NIH, they recommended that we try a different angle of therapy for Madeleine, one which involves using some newer clinical trial drugs that are targeted at stopping the chain reaction involved in the growth of melanoma. These types of clinical trials are typically hard to find for someone whose melanoma tests "Braf negative" as Madeleine's does, so we are very fortunate that a trial for her melanoma type just opened in late September at UCSF.

Madeleine has spent the past week doing pre-trial testing, consulting with the melanoma specialist at UCSF, and also meeting with our local oncologist here in Santa Rosa.

"Never give up hope"

(Honestly, sometimes at UCSF it can seem a little rushed and impersonal, which makes it hard to come to a good decision - even though UCSF is also a source for some of the best treatment available for melanoma.) 

We are so grateful that Madeleine's local oncologist was able to make space to see her on Thursday, so that we could talk over the treatment decision with him and also get some help understanding how to deal with some of the pain and fevers that Madeleine has been experiencing during this past week or so. All of her doctors agree that the pain is from the growth of the liver and spleen tumors, and that the daily fevers are also a side effect of that growth as well. She is now on medication to help deal with the pain and fever.

On Thursday, if all goes as planned at her UCSF appointment, Madeleine will begin taking the two clinical trial drugs that are designed to help her as she continues this fight. She is definitely determined to keep fighting, and so appreciates all the encouragement she has received. She will need another biopsy around a week after she begins the treatment, and then will have scans in eight weeks to evaluate. 

Please continue to pray for Madeleine --- for her healing, for freedom from pain, and for strength for her and her family during this time. Thank you, everyone.

Hard news - but still fighting

Madeleine’s Blog

October 4, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

We received some difficult scan results at the end of the day yesterday. Madeleine's existing tumors have grown slightly, and there are two new tumors growing in her liver. 

As you would imagine, this news hit us like a ton of bricks, especially as we had all been really hopeful about this particular treatment. (We are familiar with several other metastatic melanoma patients for whom this treatment has been successful - some of them for several years now - but unfortunately, it was just not to be in our situation.)

Aboard the NIH shuttle

Madeleine was disappointed (and frustrated), but she also has an amazing ability to rebound, and a lot of determination to keep fighting. She and her mom went out tonight to relax and enjoy some dinner at California Pizza Kitchen. 

Tomorrow, they will fly back home and continue the hunt for a new treatment that will be a good match for Madeleine's situation (progress has already been made in that direction - more on that in an upcoming post).

We are actually very fortunate that there are several new treatments that have become available just in the past few years - for so long there were very few viable treatments available for metastatic melanoma patients.

Because of the scan results, our time at NIH has come to a close (as they believe it is in Madeleine's best interest to move on to something else). We have been treated well here, and even though it doesn't appear that the TIL therapy itself has worked, we are thankful that we were able to have the opportunity - especially as we hear on the news that NIH is unable to accept new patients right now because of the government shut down (!). We are also thankful that as a part of her TIL treatment, the doctors here removed that softball-sized tumor from Madeleine's liver, which continues to be an on-going benefit.

Thank you everyone for your continued prayers, support, and encouragement - especially as we look toward the next phase of this battle.

Bridesmaid :)

Madeleine’s Blog

September 22, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

Madeleine as a bridesmaid for her cousin

Can you believe that it has already been one month since Madeleine first began the chemo that prepared her for the introduction of her TIL cells? Wow - time flies by! 

She has been doing really well during this month of recovery. She asked me to say thank you to all of you for your cards and other support/encouragement while she was in the hospital.

One of Madeleine's main goals as she came back from NIH was to be able to participate as a bridesmaid in her cousin Katherine's wedding, which was on September 14th (just a few days after Madeleine came home from NIH). 

I am pleased to report that Madeleine did great at the wedding and was able to fully be involved in the whole celebration - including the rehearsal, the rehearsal dinner, and everything. It was amazing, and she looked gorgeous!

Here is what Madeleine wrote on her cousin Katherine's Facebook the day of the wedding:

"You are more than just a cousin to me. You are an inspiration, a role model, and basically my big sister. I don't know what I would do without you. You have always been there for me. We are family and nothing is stronger than family. I am so happy for you and Kevin. I love you. Congratulations!"

And her cousin responded:

"I love you Madeleine...thank you for being a part of our special day, that meant the world to me. Your description on this photo [above] totally made me cry. I love you with all my heart."

We are so grateful that Madeleine was able to be a part of the wedding and to stand alongside her cousin on such a special day. We thank God for moments like these.

Deanne, Madeleine, David, and Max at the wedding

Thank you to everyone for your continued prayers for Madeleine's complete healing. She goes back to NIH the first week of October for scans and tests in order to evaluate her progress.

Heading home!!!

Madeleine’s Blog

September 7, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

Enjoying the "outside world" :)

Madeleine gets to fly home tomorrow - four days early! Her blood levels have come back to normal, she feels quite a bit better, and it is time to go home to complete her recovery.

Deanne and Madeleine went out to celebrate tonight at a restaurant in Bethesda, and even got to enjoy a beautiful sunset.

It definitely feels a little different to have the freedom to go outside once again after so many days in the same hospital room and environment. It is also very different (and enjoyable!) to have new choices of things to eat, and the desire to eat food as well.

We are all relieved that Madeleine made it through the treatment so well, thanks to answered prayers, encouragement from so many people, and the excellent care of the doctors and nurses at NIH.

In a month, Madeleine will be back for a few days of scans and also apheresis (where they run your blood through a device that gives the doctors an idea of how the TIL cells are doing). This means that she'll have to keep the "port" that they surgically put into her neck until after that visit.

So, the treatment part of the TIL therapy is completely over, and she has moved into the observation and assessment part of the trial. Thank you for your continued prayers for Madeleine - we are praying that those TIL cells will continue to mobilize and fight any remaining melanoma.

Stronger every day!

Madeleine’s Blog

September 5, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

Receiving another encouraging gift

Madeleine had been feeling fairly poorly (fatigue and "bone aches" from the shots they give you that stimulate your bone marrow to start producing more white cells). But, last night and today there has been a huge improvement in her fatigue!   

She is no longer "neutropenic" (low white cell counts) so that makes a big difference in how she feels. She even went on a long walk last night and also today, where before that would have just been impossible a few days ago. This is a big step toward her getting ready to go home - she also needs to have stability in her other blood counts. They have been having to add platelets, so we are hoping those will also stabilize soon. If they do, then she may even be able to go home early.

We continue to be blessed by so many people's kindness... This time by a 14-year-old girl from Virginia who doesn't know Madeleine, but wanted to send a gift to encourage a young person battling cancer. She sent Madeleine a beautiful bag (pictured) filled with all different kinds of makeup and other fun items. Madeleine has already made good use of that. :)

Dart gun hits its mark!

Yesterday, Madeleine recovered enough that she was no longer needing to sleep as much of the day. As her Facebook post put it, "I'm awake enough to realize that I am bored out of my mind!"

Just at the right time, she received a boredom-busting gift from her cousins: a Justin Beiber poster and a couple of nerf dart guns to go with it . It didn't take them long to get the poster up - and the nerf guns loaded...!

If you look closely, you can see that one of the darts has found its mark. (Not sure if the marksmanship should be attributed to Madeleine, or to Deanne, but it looks like they had some fun with it.)

Thanks again, everyone, for your prayers, gifts, and encouragement!