PET Results are clear again! - by Mark

Ane and I met with Dr. Urba this morning and discussed the happy news of another clear scan.  We determined to go off the medication again, keep an eye out for any new tumor growth and hit it again with the same or newer drugs when or if they come back.

The drugs currently available that might have a permanent cure still have very low success rates and are not to fun to take.  But there are new ones in trial that look promising, so stalling is still our best option.

We have been very blessed with such good responses to the drugs we have been taking.  Thank you again for you faith, love and prayers.  It is great to be alive!!

Warmly,
Mark

Dr. Urba Confirms - by Ane

This morning  Dr. Urba confirmed what we understood from the PET report - all of the tumors are gone!!! His recommendation is for Mark to stay on the meds for 3 more months just to be extra sure.  At that time Mark will have another PET scan and if all is still clear he will most likely discontinue the drugs.  He has had very minimal side effects this time which has been such a blessing.  We are thrilled with these results and certainly do appreciate all of your prayers and support.

Positive PET Report - by Ane

Mark had a PET scan on August 8th.  Shortly afterwards he received an e-mail from Dr. Urba that indicated that it looked good, but we didn't know just what that meant - were the tumors still there but smaller or were they completely gone?  Dr. Urba said we'd discuss the results at our next appointment.  That was supposed to be tomorrow, but it was moved to the 25th.   Fortunately, the lab results were recently posted on Mark's Providence MyChart. Here is the summary:

"FDG-avid left adrenal mass and subcutaneous nodule in the right hip
region are essentially resolved. Other areas of increased FDG uptake
are also resolved.

In comparison to the prior studies, this PET/CT study shows improvement
of disease, with no new FDG-avid lesions, and resolution of numerous old
FDG-avid lesions."

So...what we take from this is that once again the tumors are resolved and there are no new ones! AWESOME!!!

Cruising Along - by Ane

Yesterday Mark saw Dr. Urba (I was in UT so didn't go with him).  He is SO pleased with the way Mark has responded to the drugs.  In a month or so Mark will have a PET scan and Echo to see the status of tumors throughout his body and how is heart is responding to the medications.  If the tumors are gone he will likely get off the meds again.  Mark still has almost no negative side effects with these drugs, but if his body figures out a way around them they will no longer work, therefore it's best to get off them before that happens so they can be used again, if needed.

A few weeks ago Mark gave the opening remarks at the Lake Oswego "Relay of Life".  He did a great job!

Tonight Mark joins me in UT and tomorrow we'll drive up to Rexburg, ID to the graduation exercises for Rachel & Tighe who are both graduating from BYU-Idaho.  Rachel received the Gordon B. Hinckley Award of Excellence in the Communications Department. Tighe will be speaking at convocation  for both the Communications and Business Departments.

On Saturday Eric & Jessie, Rachel & Tighe, and Mark & I will fly to Tampa, FL where we'll board our ship for a Caribbean Cruise - visiting Cozumel, Belize, Roatan and Grand Cayman.  We're cruising for a celebration!

A Very Happy 36th!!! - by Ane

This week-end we are celebrating our 36th wedding anniversary in Cannon Beach.  Yesterday morning Mark surprised me with a note “…please join me for a weekend getaway to our favorite spot on the beach - just you and me and the sea gulls – beginning as soon as we want to go through Monday.”  We picked up the pieces from our fabulous family gathering on the 4th, packed and headed out, stopping at Sushi Hana for lunch. By 2:30 p.m. we had checked into our room at Webb’s Scenic Surf with a view of the sandy beach, the stream that flows to the ocean, the waves as they push their way toward us, and sea gulls darting back and forth.  Oh, how good it is to be here again, but most of all how grateful we are to have had another year together with hope for many more to come!

Thursday Mark had an ultrasound to see if the tumor in his left adrenal gland is still evident.  He has been on the new meds for over three months. Today we got the lab results from Dr. Urba:

Mark - Here is your ultrasound result. Looks good because it was plenty big enough to be seen by ultrasound if it was the same size.
Walt

7/4/2014 EXAMINATION: US ABDOMEN LIMITED COMPARISON: PET/CT March 28, 2014 and CT abdomen and pelvis March 26, 2014. HISTORY: Malignant melanoma. Evaluate left adrenal mass after cancer therapy. PROCEDURE: Targeted ultrasound is done of the left upper quadrant to evaluate for the adrenal gland mass. FINDINGS: No obvious mass is present in the left upper quadrant. The adrenal gland or mass are not seen. IMPRESSION: Neither the adrenal gland or mass are identified on ultrasound in the left upper quadrant. Suggestive that the mass is smaller, but either repeat CT or PET/CT scan would much better evaluate.

So, either it’s gone or small enough that it’s not evident by ultrasound.  Fabulous! That makes our celebration complete!!

I got whomped on! - by Mark

Two nights ago I was up much of the night with fever and chills.  I was shivering for over an hour no matter how many blankets Ane put on me. I ached all over and couldn't get comfortable.  Fevers and chills are the most common side effect of the new meds we are on, but we have not had any since we started them over two months ago.  I had just been telling some friends how amazing these drugs are as I have had no noticeable side effects.  Now we were both wondering how long we would have to endure this.

Ane looked on the internet at other's experiences with these drugs and found this not unusual.  She also noted that some had gotten off the meds for a few days and then back on with much improvement.  So I didn't take them the next morning and emailed Dr. Urba.  Even though he was at a conference he got right back with us and said it was fine to get off the meds for a few days but it might not be a side effect. It might be an infection of some sort and we might want to see our regular physician.

Our family doctor got us in that day and after several tests, wasn't sure what it was but wanted to try some antibiotic, to see if it would help or not.

Today was a whole new world.  All the pain, fever and chills went away.  Wow, what we take for granted can so quickly change.  So I am staying on the antibiotic for 10 days and starting up the meds again Monday morning.

We still don't know what it was/is but for now things are much better.

Thank you again for your warm support, good thoughts, faith and prayers.

He Feels Great! -by Ane

It's been almost two months since Mark started the new meds - Tafinlar and Mekinist.  One is a new version of the BRAF inhibitor that he took before and the other is a MEK inhibitor.  The combination is working amazingly well!  We know the tumor in his adrenal gland shrunk right away since it stopped hurting within days of starting the medications.  In another month or so Mark will have some type of scan to see the status of the tumors.

The side effects have been minimal - so much better than with Zelboraf.  There is hardly any sun sensitivity or skin growths that were such an issue before.  He has experienced some joint pain, but not much.  That didn't happen with the Zelboraf for several months, so some of the side effects don't show up right away.  It seems that his hair is thinning, but not too much yet.  He started losing weight and lost about seven pounds, but that has stabilized now.

All in all Mark feels GREAT and nothing slows him down!

Links to Cancer Luncheon Presentations

Mark & Ane:
http://www.youtube.com/watch?v=TIDv-HQtuSM&list=PLEC766853CE08D561&index=2

Dr. Walter Urba - our amazing oncologist:
http://www.youtube.com/watch?v=IXbcll-BWRg&index=3&list=PLEC766853CE08D561

Chris Spielman - keynote speaker - he did an outstanding job!
http://www.youtube.com/watch?v=_VOuzjV2Y1s&index=4&list=PLEC766853CE08D561

A Big Thanks!

Thank you for all the contributions made to the Providence Cancer Research Center. We were able to present Dr. Urba with a generous gift from the donations made in our behalf. We sincerely appreciate your support!

Speaking at the Creating Hope Luncheon was an awesome experience. After we told our story, Dr. Urba outlined  the current research in immunotherapy and the potential it has for cure. Chris Spielman in a humble and passionate way shared the difficult and life changing experience of his wife's battle with cancer. She lost the fight five years ago, but he has not lost his drive to end this dreaded disease and to help others in their journey.  It was an inspiring event and we felt so fortunate that we were invited to participate.

We will post the videos as soon as they are available.

With appreciation,
Mark & Ane

Our Journey with Metastatic Melanoma - by Mark and Ane Hornibrook

Our daughter Rachel has published a book of our journal entries dealing with this cancer.  The title is "Fear Not, I Am With Thee: Our Journey with Metastatic Melanoma".

 Here is the link to the amazon.com site where it is available: http://www.amazon.com/Fear-Not-With-Thee-Metastatic/dp/1495914305/ref=sr_1_1?ie=UTF8&qid=1397771435&sr=8-1&keywords=fear+not+I+am+with+thee

Mark on TV!

Skin cancer survivor (Mark) talks about the dangers of the sun.

http://www.katu.com/home/video/Skin-cancer-survivor-talks-about-the-dangers-of-the-sun-257330511.html?fb_action_ids=10152211157938778&fb_action_types=og.recommends&fb_source=aggregation&fb_aggregation_id=288381481237582

Creating Hope

Dear Friends and Family,

As you may know, Mark has received his cancer treatment at Providence, from the nationally-known and truly wonderful Dr. Walter Urba. We are so thankful for the care we have received, and continue to receive as new tumors are now evident.

We have been asked to share our story at the Creating Hope for Cancer Patients luncheon coming up on May 14.

Dr. Urba and his team’s sole focus at the Providence cancer research center is immunotherapy. In January of this year the journal Science identified immunotherapy as the Breakthrough of the Year! It is a new paradigm, “an entirely different way of treating cancer.” Immunotherapy takes advantage of a patient’s own immune system to battle tumors,  in a way that allows it to target and eradicate cancer cells, while minimizing damage to normal tissue.  In Mark’s case it is our only medical hope for a permanent cure, but much research is still needed. 

To show our gratitude and to support this cause, we would like to make a donation from us and any who would like to join in funding this critical cancer research.  We understand that there are many worthy causes that need support, and we cannot give to them all. Our purpose is to inform you of this need, so please only give if this speaks to your own heart. A donation to the Providence Cancer Center luncheon can be made by clicking the link. Please write “Mark and Ane Hornibrook” in the “In honor of” line. We will present this gift to Dr. Urba at the end of our remarks.  

We can’t begin to thank you enough for the support you have given. Your love and prayers have sustained us! The treatment Mark had been on was supposed to shrink the tumors, but they disappeared and have not returned in those original sites. That is a miracle!

With much love and appreciation,

Mark & Ane

Our Oncologist

IN THE NEWS

Walter J. Urba, M.D., Ph.D.: Cancer Warrior

The Oregon Historical Society has announced that Providence Cancer Center’s Walter J. Urba, M.D., Ph.D., will receive its 2014 Oregon History Makers Medal. In making the announcement, the society called Dr. Urba a “cancer warrior” and “a nationally-respected leader and pioneer in immunotherapy” for his work leading a team of more than 90 investigators toward the goal of curing cancer.

Dr. Urba is one of four recipients.The awards, given to individuals and organizations that are positively shaping the history, culture, and landscape of Oregon, will be presented this fall.  Read more.

Good News - by Ane

Yesterday we got the results of both the echo-cardiogram and MRI.  Both his heart and brain are tumor free!!! We also learned that the tumor in the adrenal gland is 2.6 x 1.8 inches, and there are about seven other small ones in soft tissue throughout his body.

So...it's been almost a week since we first found out about the new tumors. We're adjusting to our new reality and feeling more hopeful. We will move forward and pick up the 'goblet of gratitude' instead of the 'bottle of bitterness'!

Wish this was an April Fool's Joke! - Mark wrote

We thought we’d dodged the bullet and were done with the cancer scene, but alas, it’s not to be.

 Ane and I found out yesterday, through a PET scan and Dr. Urba that the old tumors are still gone but there is a new crop.  I have had gradually increasing pains in my abdomen over several weeks/months.  At first I thought it might be a pulled muscle or something like that, but it didn't go away. I became more concerned about the time we were finding out about the cancer deaths of two of my good work friends, Tom Londen and Fred Rockwood.  I couldn’t bring myself to mention it to Ane when she was morning their deaths from the same type of disease.  It stayed on and got worse.  I set up an annual physical and told our doctor.  Given my history he was not about to wait on getting it checked out so the next day I had a CT scan.  Our Oncologist got the results that day and set up a PET scan for the following day. Yesterday we met with Dr. Urba, had an Echo-cardiogram, will have a brain MRI on Wednesday and the drugs should be here in a few days – all of that within one week! This team is on it!!

 The PET scan showed one large active tumor in my left adrenal gland and six or so small ones in the soft tissues in my back, abdomen and legs. Since the BRAF inhibitor worked so well, Dr. Urba wants to use it again.  Although this time a newer version is available with fewer side effects and when used in combination with a MEK inhibitor has a better chance of positive impact, 75% instead of 50%, and the duration of response, 10 months instead of 5 months.  Now, last time with all of your faith, prayers and blessings we got over two years.  Hopefully we will get even more this time.  As you know, this drug is not supposed to cure, just stall, and we got a great stall!!  It did not come back in the same places, so those tumors appear to be gone!  These new ones seemed to sprout up like new plants from seeds that were not affected by the Roundup. 

 We are learning as we go and are so grateful for the new medications and the miracle of success we have experienced with them.  We hope and pray for the same wonderful results again.  We're grateful for the sweet feelings of love and faith it has brought us.  This will just extend all of that and remind us of how important you are to us.

We have been asked to share our story at this event in May. 

Our Family with Dr. Urba - by Ane

Last Tuesday we had to opportunity to take our children to meet Dr. Urba.  We had lunch together and he took us on a tour of the Providence Cancer Center Research Institute where we saw the labs and met some of the scientists behind the scene who are working diligently to find cures for cancer.  It was an awesome opportunity!

 Tyler & Kelsey, Eric & Jessie, Dr. Urba, Mark & Ane, Michael & Heather, Amanda & Jon
(Rachel & Tighe are in Idaho)

FYI Test Good - by Mark

We have such a wonderful Oncologist, Dr. Walter Urba; he is the head of the Provident Cancer Center here in Portland.  This center is part research and part treatment, a nice combination to keep everyone current and enthused about helping real people with serious health issues. 

We met with him mid-day this past Monday, and all seemed well — he was ready to let us go for another 4 months. However, we asked him about getting a chest X-ray to be sure.  He said I looked great but if we wanted one, it has been 6 months and the X-rays are not too invasive or expensive, so we could do it.  A couple hours later we got to the imaging location, did the X-ray and after shopping at Costco we got home to the email from Dr. Urba stating, “FYI – Test Good.”  So now I have been almost a year and a half tumor free and off the Zelboraf for a year.  We have been so blessed!!

In reality, we have been blessed in so many ways.  I have a wonderful wife and family, which keeps growing and getting more and more wonderful.  Our company is doing amazingly well.  We are enjoying a great culture, leading the industry and growing as fast as we can while maintaining the quality.  We served 34,000 individuals last year by planning their funerals ahead of need.  Their family’s lives will be so much easier and more peaceful when their loved one dies.  I have had the opportunity to serve in the Church and come to know that God lives and Jesus is the Christ — what true peace, joy, happiness and hope that has brought me.  I had no idea how wonderful it could feel.  I had no idea that prayer could be two-way.  It is so comforting to receive His counsel on so many things. 

We added a new tab to our blog, "Words of Comfort."  Throughout this journey, we have been comforted by words of scripture and inspiration.  They are now recorded under that tab.  We hope these words can be a source of comfort for others.

Thank you for your care and concern, your faith, good thoughts and prayers.