Life & clinical trial plans

Madeleine’s Blog

February 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

Kenzie, Tanner, Austin, and Madeleine in San Diego

It has been a month since the last post so I want to update you on what has been going on. First of all, you should know that Madeleine has been doing well & feeling well. Thanks for all of your prayers. She has been back working at the gym, enjoying being with friends and family, and appreciating just being able to live life. She was able to go down to San Diego at the end of January, and really had a fun time with her friends there and with Austin.

In her spare time, Madeleine has been putting her passion for athletics and coaching to good use. She recently began helping coach the 7th & 8th grade volleyball teams at Piner Olivet Charter School (where she went to middle school). And, she is also helping assist the coach of Montgomery High School's swim team (she was a part of the team last year).

On the health front, she made it through another round of radiation at the end of January that was targeted at the new lymph node that was growing near the previous area. In consultation with her oncologist and UCSF, she finished the Yervoy infusions after two rounds and began working to get into the clinical trial at UCSF. We went down to UCSF at the end of January to get the process started, and have been going through screening tests and waiting for the paperwork to come through.

UCSF Comprehensive Cancer Center

We finally got word that the paperwork was ready, and so yesterday we went down to UCSF and signed the consent forms that will allow her to start the official screening to see if she can be a part of the "anti-PD-1" clinical trial that is for those who have already had Yervoy. She has more tests to make it through (blood tests, CT-scan, and biopsy), and then the drug company will let us know if she is accepted into the trial.

If all goes well, Madeleine will begin the clinical trial during the first week of March. She would go down to UCSF every three weeks to have blood tests, an exam, and an infusion at the UCSF treatment center (pictured above). They will be able to work around some of the vacation time that Madeleine already has planned :) so that makes us all really happy.

We are really excited about the possibility of her being able to start this new medication, which has shown a lot of promise (and side effects that are minimal - especially compared to Biochemo or some of the other treatments out there).

Please be praying with us that the door would open for her, and that this treatment would really be effective. As always, thank you for your concern and support.

PET scan results & new plan

Madeleine’s Blog

January 15, 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

Something to be thankful for... Madeleine & Austin - December 2012

Last week, we met with Madeleine's local oncologist in order to hear the results of her January 4th PET scan.

That night, with a lot of emotion, Madeleine wrote the words that I then copied into this blog and titled, "What a year it has been." Her words (describing the things she has learned through this difficult year) reflected a perspective that few of us -- without the touch of cancer or other tragedy -- are able to attain. Life IS precious, and even in regular, day-to-day life we have so much to be grateful for.

Now, back to the results of the scan.... The good news is that the cancer in her liver appears to be about the same size, and there are no new spots in the liver or other organs. This is always a reason to celebrate. The other good news is that her recent radiation treatment appears to be helping shrink the lymph node on her neck - it was both smaller, and softer (which is a good sign). The scan did show some growth in an adjacent lymph node, as well as a new lymph node in a nearby area -- and, of course, we don't like to see this.

The oncologist did explain, however, that he wouldn't actually expect to see results from the Yervoy infusions quite yet as Yervoy can take quite a while to work, and Madeleine has only had two infusions so far (one every 3 weeks). Fortunately, she has had very few side effects with the Yervoy, and so that has enabled her to work, run, and do lots of regular activities that she is happy to be back to.

Our local oncologist has been consulting with Dr. Daud, the melanoma specialist from UCSF. There is a  promising clinical trial that has shown very good results, and Dr. Daud believes it will be a good match for Madeleine's situation.

Because there have been so many recent advances in melanoma research, and it takes so long for good drugs to be approved, sometimes the most effective melanoma treatments can be found by becoming a part of a clinical trial.

So, Madeleine will be meeting with Dr. Daud down at UCSF on Tuesday morning, January 29th, and if all goes as planned, her participation in the clinical trial would begin in early February.

The doctors are also considering doing additional radiation on the lymph nodes that are showing growth. It is always a balance between wanting to shrink the tumors on the one hand, but also wanting to avoid the potential downsides of radiation on the other hand.

Thank you for your prayers for Madeleine (and the doctors) as all these decisions and treatment options are being considered. We appreciate all the encouragement we have received.

What a year it has been

Madeleine’s Blog

January 10, 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

From Madeleine's Facebook post this afternoon:

January 2012 - Lymph node surgery

A year ago, my parents sat me down and tried their best to keep the tears from rolling down their faces when they had to tell me the news I had melanoma. I was told that on January 20th I would be undergoing serious surgery to remove the lymph nodes in the left side of my neck. The pictures below, to this day, still make me cry. I had no idea that that experience and the days to follow would change my life so significantly. 

Recovering from surgery in January '12

Following my surgery, I received chemo treatments and radiation. Within two days before graduating high school I heard even worse news, the cancer had spread to my liver. I was told I would be going to Riverside for week long bio-chemo treatments. The five months of treatments tested me emotionally and physically. It tested my trust in God and it tested my family's strength and dedication. After hearing in November of 2012 that the cancer had continued to grow slightly in my liver and still appeared in my neck, I began even more chemo treatments here in Santa Rosa. 

After receiving my most recent results of my PET scan Friday, I do not know what my further treatment will be, however I know, and will continue to fight. Being diagnosed with cancer has changed my life in so many ways and has taught me so many things. I never thought I could go through as much as I have and looking back it still shocks me!

Life is SO precious - don't take a single day for granted. Be thankful for what you have. Tell people how much they mean to you. And no matter what, always keep a smile on your face. There are some people I owe a BIG thank you to and could not have gotten through what I have without them.... And thank you to ANY ONE who has taken a minute to encourage me and remind me to keep fighting for my life. 

Thank you & fight on. ♥

Merry Christmas!

Madeleine’s Blog

December 25, 2012

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

From Madeleine:   

Merry Christmas!!

I am so blessed to be able to enjoy the holidays with such wonderful supportive loving people. I am so thankful for all I have been given and to be feeling well on Christmas.

Have a great day everyone! ♥


(Picture from Christmas Eve: Madeleine with her family, her cousin Katherine, and with Austin)

Radiation completed

Madeleine’s Blog

December 22, 2012

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

Austin & Madeleine at the infusion center

Madeleine made it through this marathon week of daily radiation, as well as her Yervoy infusion that was on Friday. So glad to have that behind her!

This time, Austin was here in town and was able to go with her to the infusion - it was so nice to have his encouragement, support, and company! :)

Now, Madeleine's looking forward to Christmas and is so glad to have some more time off of treatment between now and her scans that come on January 4th.

Please continue to keep her in your prayers ~ and have a wonderful Christmas, everyone!

Yervoy + radiation

Madeleine’s Blog

December 14, 2012

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

It has been 2 weeks since Madeleine's first infusion of Yervoy, and I'm happy to report that so far she has not experienced the negative side effects - which is such a blessing! She has been able to enjoy life and all the usual activities of this season. It is so great to feel good.

Radiation mask before it dries

This time, however, has not been without its challenges. Because of a slowly enlarging lymph node, Madeleine has to go in to have more radiation targeted to that area.

On Monday, we went to the radiologist and she was fitted for a new custom radiation mask. (To do that, they stretch the form tightly over you, and then dry it until it hardens into a rigid mask that will hold you in the right position for the precisely-targeted radiation.) To be honest, this process was no fun for Madeleine because of the pressure it put on her lymph nodes, but she made it through.

So, the radiation is planned to begin on December 18th, and then her next infusion of Yervoy will be on December 21st. We are hoping that the radiation will give her some relief from the growing lymph node, as well as to work synergistically with the Yervoy against her melanoma.

Enjoying this season! (from November)

As we mentioned before, Yervoy works by taking the "brakes" off of your immune system, helping your body to recognize the melanoma as being "foreign" so that it will attack it instead of letting it grow. Because of this, it usually takes time for it to work (weeks or even months) and to get your immune system revved up enough to effectively go after the melanoma. So, we are waiting and praying in the meantime.

Madeleine's next PET scan is scheduled for January 4th. Between now and then, she's looking forward to being with friends who will be home from college and elsewhere, and she's also really looking forward to enjoying this Christmas time.

As always, thanks so much for keeping her in your prayers and for your encouragement during this time.

And the decision is...

Madeleine’s Blog

November 30, 2012

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

Decisions...

The decision has finally been made, and the recommendation is for Madeleine to start on a drug called ipilimumab - which is also known as "Yervoy" (much easier to spell and to say!).

With the help of her local oncologist, and consultation with the melanoma specialists at UCSF, it was decided that this would be the best option for Madeleine right now. (Their recommendation had been to check into getting into a promising clinical trial with a new drug known as anti PD-1, but there aren't any openings available at this time.)

So, Madeleine starts this afternoon receiving her first infusion of Yervoy. She's relieved that this can be done right here at Kaiser... that it is just an IV infusion (no central line - yay!)... and that the infusion lasts only 90 minutes. Also, she only has to have one of these treatments every three weeks.

Yervoy is a drug that works by "taking the brakes off" your immune system so that that it can recognize and destroy the cancer cells. This process can take some time to work, and it can also result in some significant side effects in a percentage of patients. But the drug was approved last year because of its demonstrated effect on patients with melanoma that has spread, and we are hoping and praying that this drug will also be effective in Madeleine's case.

We have been praying that the treatment choices would be clear, and that we would know which path to choose -- so we are really thankful for the clear consensus from her oncologists. They are also currently considering an additional option that may enhance the effect of the Yervoy as well.

Please join us in praying that this treatment will be effective in fighting this cancer, that her body's own immune system would be mobilized to fight, and that Madeleine would be protected from any serious side effects.

Thank you so much for your encouragement and prayers. We'll keep you posted!