Off to the Races (Treatments) Again

Mark had another PET scan this past Monday and learned the results on Wednesday at his appointment with Dr. Taylor. With Covid precautions, I can’t go to the appointments, so Mark patched me in via phone. He could tell from the doctor’s countenance that something was amiss. Dr. Taylor pulled up the images manifesting a golf-sized tumor in Mark’s liver. There was only one, but it indicates that the cancer has found a pathway around the medications, and other tumors will likely start growing. We have known all along that the current therapy is only a stall, so it was just a matter of time. Fortunately, this round provided 10 months with an excellent quality of life. Tafinlar and Mekinist were started on the 21st of February 2020. Despite all the craziness with a pandemic, natural disasters, and political unrest, we have had a wonderful year. Covid-19 allowed us to have more time together at home, and every day was a blessing! 

Dr. Taylor went over several treatment options:

1. Remove the tumor in the liver. The liver grows back quickly, so that wouldn’t be a problem, but the surgery is not easy, and other tumors will likely start growing soon. Why go through the surgery if it's not going to make a difference?

2. Radiate the tumor. The same problem exists-- the problem is likely more systemic, which would require therapy for the entire body.

3. Go back to Keytruda. It worked well before with minor side effects, but a tumor grew several months after the round of infusions, so it is not durable, but could be used again for a stall.

4. Clinical Trials – None currently have proven positive outcomes.

5. Interleukin 2. This therapy has been around for over 20 years. We have not used it because it is so hard on the body, but it does have a chance of complete response. The window of opportunity of using this treatment is closing, as Mark needs to be in good general health. It is typically not used in patients over age 65 or 70. Mark will soon be 69. Interleukin 2 involves one week in the hospital with daily infusions. Multiple side effects must be monitored. Two weeks at home and another week of infusions in the hospital. If scans reveal shrinkage or at least no growth, he can go to round two, which would be the same procedure. Three rounds are the maximum dosage, as long as there are positive results, and he can handle the side effects.

Our current best option is Interleukin-2. The snag is that Mark must pass the stress tests. His lungs seem to be in good shape, but he continues to have irregular heartbeats. If his heart is not strong enough, that will nix the deal. The stress tests will be scheduled soon. He will stop the current medications about a week before the tests. Dr. Taylor believes he has a better chance of passing the tests if he is off the current medications. They could be affecting his heart.

About 25% of patients receiving IL-2 have a positive response, meaning that the tumor either stops growing or shrinks. Somewhere between 5-8% have a durable response, a prolonged response beyond what is ordinarily seen with treatment, perhaps extending life for a year or so. A complete response can only be determined if the patient has no evidence of cancer for an extended period of time and lives years beyond what is expected. When Mark was first diagnosed with cancer almost 9 years ago, he had about a 3% chance of survival, so we’re okay with small percentages!

While it is always hard to get negative news, we knew it would eventually come. Now, we will get on with the next treatment hoping that it gives us more time together. If Mark passes the stress tests, he will begin the first set of infusions on January 18, 2021. The typical hospital stay is 6 days (and I can stay with him – YEA!)

Our ultimate hope is in our Savior. Recently, President Nelson said, "The question for each of us ... is the same. Are you willing to let God prevail in your life? Are you willing to have your will swallowed up in His?'

Recently, we came across a poem that was helpful to us years ago when we lost a business, resulting in severe financial challenges: (There are various renditions, but this is one we first heard.)

My life is but a weaving, between my God and me.
I let Him choose the colors. He worketh steadily.
Ofttimes He worketh sorrow, and I within my heart.
Forget He sees the pattern, while I see only part.

The dark threads are as needful in the weaver’s skillful hand
As the threads of gold and silver in the pattern, He had planned.
Not till the loom is silent, and the shuttles cease to fly,
Shall God unroll the canvas and explain the reasons why.

Elder Neal A. Maxwell said, “Now, as you and I look at our lives . . . , we sometimes do not understand that through which we are passing, but, being submissive, we can trust Him.
“The day will come when the tapestry of your life will be unfolded, and you will see divine design all through it, and praise God for the experience and the tutoring which, in His goodness, He has given you” (“Willing to Submit.” [address given at BYU—Hawaii devotional, 9 Feb. 1988], 8).

That said, it is NOT easy to go through these challenges. Tears and heartache are real. Talking about it now, when Mark feels great, is vastly different than when he is weak and sick. During those times, we will lean on the kind, loving support of family and friends. The love of others and the peace that comes from our Savior bring sweetness in the midst of pain.

Also, we recently have had some special feelings that give us much hope. They have led us to "fear not" but to have faith. We are truly grateful for your faith, hope, and prayers.

The Meds Keep Working

Another PET scan this past Monday, August 17th, has once again revealed no tumor growth! How thankful we are!! Mark is beginning to have some side effects from the cancer medications. Joint pain seems to be the most persistent issue. Dr. Taylor acknowledged that this is common. If the pain gets too severe, the dosage can be reduced, but it will remain the same for now.  

The Adrenal Insufficiency continues to be managed with Hydrocortisone. Some days Mark feels great.  Other days he experiences extreme fatigue, nausea, and dizziness.  For the most part, he can function normally if he gets enough rest. He is a trouper and does not like to complain. When he does, I know that he is definitely not feeling well.  

We continue writing stories of our lives.  It is sweet remembering the joys and sorrows, the trials and the triumphs, and above all, the many miracles and blessings that we have been recipients of. This summer, our outdoor project has been installing zip lines for the older grand-kids and anyone else who is brave enough to try them. (There is a 500-pound limit!)  Each zip-line requires a take-off and a landing, so several platforms and towers have been erected. Building has always been play for Mark, which gives him a chance to do something that he really enjoys.  

As much as possible, we spend time with our children, their spouses, and 18 grandchildren. They bring the greatest joy. Life is good! 

Great PET

Mark had a PET scan done on the 18th of May.  Dr. Taylor texted later that day, indicating that there were no active tumors.  When Mark went to see him on the 20th, he saw the scan.  The mass that has always been in the adrenal gland area is smaller than on the previous scan, which is great news!  This has always been the problem area -- whenever tumors grow, this one grows and is the one that has caused so much pain.  Currently, it is NOT active, although there is still a mass present.  Mark will continue taking Mekinist and Taflinlar for as long as they work.  He will no longer go off of these medications.  So far, side effects have been minor.

His biggest challenge now is just figuring out how much Hydrocortisone to take daily. If he doesn't get enough, he gets dizzy, nauseous, and super fatigued.  Of course, there are side effects if he takes too much, but he is figuring it out, and life continues on as a new normal.  We are enjoying the time we have at home together, so we are not bothered much by the Corona-virus.  Our children and grandchildren bring us so much joy, and we are so grateful that they are close by!

No News is Good News

It's been two months since a post.  No news is usually good news, right?  And for us, it has been.

The prednisone has been replaced with hydrocortisone at a level that mimics the normal cortisol level needed in the body.  Because cortisol is essential for life, this medication will always be part of my daily regiment.  I wear a bracelet that states "Adrenal Insufficiency" in case of an accident.  Whenever my body is in a state of stress, extra cortisol will be required. 

Recently, I had some bleeding in my bladder.  To be sure there was no cancer present,  a cystoscopy was ordered. Some of you may be familiar with this procedure.  I was not.   As you might imagine, there is only one way to see inside the bladder without an operation.  It requires a very long camera to be inserted. The doctor told me ahead of time that there would be some pain and discomfort, but he asked me not to kick him.  I responded, "If you don't hurt me, I won't hurt you!"  He chuckled and said he was sorry, but it doesn't work that way.  Fortunately,  it didn't take very long, and he could tell me right then that there was no cancer.  Another small problem may be causing the bleeding, which has been exacerbated by the blood thinner I have been taking.  After discussing this with the heart doctor, I was able to go off all three heart medications. Yahoo!

The Tafinlar and Mekinist seem to be doing a great job of keeping the tumors from growing.  We'll know for sure next month when I have another PET scan.

There seem to be side effects of each medication.  There is currently some neuropathy in the toes, swelling of the ankles and feet, surface thrombosis, muscle aches and pains, joint stiffness, cracks in the palms of my hands, general fatigue and weakness, and lack of stamina, and now kinky hair! Still, those are a small cost for life!!

Thank you again for your kind thoughts, faith, and prayers!

Moving Down on the Meds.

Mark feels better than he has felt in months!  It was remarkable how fast the cancer drugs reduced the pain by shrinking the tumor.  His energy level has also increased so he is back to working a full day without a nap.  It has been amazing!!

Unfortunately, his body started attacking his digestive track again.  Just after our last post Mark had to go back up to 30 mg of Prednisone a day. Dr. Taylor scheduled an infusion of infliximab for Monday, the 24th of February.  It seems to be working.  Mark is back down to 15 mg/day. Dr. Taylor also took him off of the Levoxyl as Mark seems to be producing thyroid hormones again.  The antibiotic he had to be on with the high doses of Prednisone was also stopped.  

Today we meet with the heart doctor with hopes of getting off the three heart medications.  That didn't happen, but he did lower the dose of Flecainide, so it's likely that in two months he will be off all three heart meds.

So...gradually he's tapering off some of the medications.  He had so many that he had to create a spreadsheet to keep track of them all! Of course, he will stay on the cancer meds. (Those are the spendy ones!)  

We would just like to mention that if you want to get every post, you can type in your email address under the FOLLOW BY EMAIL button on the right side of the screen.  Each post will show up in your email account. You can also UNFOLLOW if it's getting to be too much.  This is part of our medical history so we like to keep it updated, but we certainly don't want to be invading your Inbox with too many posts.  

The pain is gone...

I took my first two pills of Tafinlar last night at 7 pm. By 9 pm 80% of the pain that I could not cover up with 3 ibuprofen and 2 Tylenol or 2 Hydrocodone was gone. I slept last night with no pain meds and this morning I took two more pills and two hours later the pain was gone!! Amazing drugs! amazing body response!! I feel very blessed!!! Another mole whacked! Now we just need to get off of the Prednisone and tame the diarrhea.

Thank you for your love, faith, prayers and hope!!!

BTW, Dr. Taylor started in the field in 2010, two years before my metastasized melanoma was discovered. At that time none of the drugs that have saved my life, existed. Normally melanoma metastasizes within 5 years of the original moles, but in my case, it was 12 or 22 years later. Being slow at some things is good:-)

Moving Forward Again

At our last appointment with Dr. Urba, he told us that he had taken a new position with Providence.  He has been head of the Cancer Research Institute in Portland, and has relented to accepting the position as head of research for all of Providence, which is mainly the Western US.  Because he will be traveling often, he simply will not have time to care for patients.  He assured us that he would not be completely out of touch and that we would be taken care of.   

With trepidation we went to an appointment today where we met our new doctor, Matthew Taylor, MD.  He is AWESOME!!!  One of the nurses commented that he's like a younger Dr. Urba, kind and caring, and also very sharp!  As we got to know him, we learned that we had all graduated from Brigham Young University.  Dr. Taylor was with OHSU for 13 years and just recently joined the Providence team as his passion is research.  His focus has been with metastatic melanoma so he is very aware of what is happening in that world.  We are delighted to have him as our doctor.  He will continue to confer with Dr. Urba.  So...we are feeling comforted that we are in good hands.   

This past week has not been easy.  Mark had to increase the Prednisone to 15 mg/day as his immune system was attacking his digestive track again.  Tomorrow he will start lowering the dose and see how it goes this time.  The cold/cough that wiped him out for about a week, is gradually getting better.  But, the pain in his abdomen has continued to increase to the point that over the counter medications, and even hydrocodone doesn't completely block the pain.   

Dr. Taylor went over our options, which are the ones listed in the last post.  We discussed each one in depth and came to the conclusion that Mark will go back on Tafinlar and Mekinist.  Last March it shrank the tumor in the abdomen in hours and continued to work for months.  It is not a cure, but it definitely gives us more time, and with minimal side effects.  If tumor growth starts while on these meds, we can add Ketruda.  Surgery is still an option if the tumor is the only place there are cancerous cells, but none of us believe that is the case.  The bright spot in the liver could be a small tumor.  If we do the surgery now, and the one in the liver starts growing, we've basically wasted a surgery as he would have to go on a more systemic medicine anyway.   So...Mark took his first Tafinlar tonight.  He is looking forward to being pain-free!  

Dr. Taylor is optimistic that as research continues, new discoveries are being made.  The longer we can play whack-a-mole, the more chance there is of finding a permanent cure.  Even if not, we feel confident that we still have more time together.

Tonight we returned to McCormick & Schmick's where we celebrated Valentine's Day 8 years ago on February 17, 2012.  There the first phone call came that indicated there was a problem -- an X-ray showed 3 dots in Mark's lungs.  While it was concerning, nothing seemed to thwart our celebration, and we still have happy memories of that night together.  The following day is when we realized it was more serious than we had thought.  It was 11 days later that we learned the full diagnosis -- innumerable tumors in both lungs, lime size tumor in the liver, lime size tumor in the right ventricle of the heart and multiple tumors in tissue throughout his body.  Those went away, others have come and gone in the bones and other locations.  Currently, we are in our 7th round of tumor growth. 

We've weathered lots of storms with divine guidance and will continue to trust in the Lord and his timing.  This scripture and quote recently gave us comfort:

"Peace I leave with you, my peace I give unto you...Let not your heart be troubled, neither let it be afraid." (John 14:27)

"I submit to you that may be one of the Savior's commandments that is...almost universally disobeyed; and yet I wonder whether our resistance to this invitation could be any more grievous to the Lord's merciful heart.
"I am convinced that none of us can appreciate how deeply it wounds the loving heart of the Savior of the world when he finds that his people do not feel confident in his care or secure in his hands or trust in his commandments.
"Just because God is God, just because Christ is Christ, they cannot do other than care for us and bless us and help us if we will but come unto them, approaching their throne of grace in meekness and lowliness of heart.  They can't help but bless us.  They have to.  It is their nature."  
Jeffrey R. Holland, Devotional delivered at Brigham Young University on 2 March 1997.

Again, we truly appreciate all the prayers, good thoughts, love and support!!!

No More Wondering

Yesterday Mark went in for the PET scan that Dr. Urba had ordered. Within a few hours we got this text from him:

Hi Mark, 
I tried to call.  We can try again tomorrow.  It is important to listen to your body.  The PET scan is bright in the left adrenal gland where you hurt.  I have to review the scans with the radiologist as there is one other very small but bright spot in the liver.  I'll reach out sometime tomorrow.  
Walt

(Bright means an active tumor.)

Of course, this isn't the news we wanted, but it is good to know the reason for the pain, and be able to move forward with treatments.  There are still several directions we can go.  

1) Back to targeted therapy, Tafinlar and Mekinist - to reduce the size thus reducing the pain. It is not a cure, but a good stall. 

2) Back to Ketruda, the single immunotherapy drug that worked so well before, or Opdivo which is similar and reacts the same.  Last time Mark was on Ketruda for a year and the tumors stayed away for another year.  This time he will stay on one of these treatments for two years.  That means infusions every three weeks.  His side effects were minimal last time so we expect the same.  Yervoy is out of the picture now because of the adverse side effects.  

3)  Hmmm, surgery doesn't seem likely if there is cancerous activity in more than one site.  

4)  There is also Interleukin 2.  We understand that the rate of cure is not nearly as good as the other immunotherapy drugs, and the side effects can be undesirable.  If it's the only option left, it is a possibility.  

We will meet with Dr. Urba soon to discuss the next steps.  Because we expected this, it has not been a shock and we are doing well.  

Our time together is precious and we are making the most of it!

A Roller Coaster

I don't like to be a whiner and I know that I've been blessed immensely, nevertheless, I am human, and the past few weeks have been for me a roller-coaster of emotions!

With Mark's immune system so aggressively attacking his body, we were confident that it was also attacking the cancer.  Our hopes were high that we could be done with cancer, and that is still a possibility! About two weeks ago, Mark informed me that he was having pain in the same place in his abdomen where the last tumor had been.  While it was mild, we had to face the fact that a tumor could be growing again.  The following Saturday night he awoke to intense pain.  Afterwards, I couldn't sleep and by morning I was convinced that the cancer had returned.  That Sunday I was quite emotional.  During church the opening hymn was "How Firm a Foundation", the song that was sung the Sunday after we found out about the cancer eight years ago.  It has become our theme song.  It should have given me comfort with these words, "Fear not, I am with thee, oh be not dismayed, for I am thy God and will still give the aid." Unfortunately, it only reminded me of how I felt that day knowing that my dearest friend and sweetheart likely had only months to live.  How could I live without him?!! 

The following day, Monday the 27th of January, Mark had a CT Scan.  Dr. Urba typically lets us know the results right away, but he didn't.  That did NOT give me any comfort.  Tuesday the tests results were in My Chart with a note from Dr. Urba, that it was a mixed scan.  There was no evidence of new tumors, and the existing ones did not look active.  He wasn't concerned.  That was a relief and I once again had some hope that the cancer was gone.  Within a day or two, Mark's pain intensified.  Because we went through this scenario last year at this time, we are not as confident as we'd like to be.

Yesterday, we met with Dr. Urba.  He is hopeful that the pain is from scar tissue which can be irritating or perhaps something else causing the discomfort.  However, we are to monitor the pain for the next two weeks.  If it persists or worsens, a PET scan will be ordered.  PET's are much more accurate because they actually highlight the cancer, whereas the CT is only a 3-dimensional X-ray.  While we aren't giving up hope, we are also realistic.  

Mark is down to 10 mg/day of Prednisone.  While the fatigue sometimes hampers his ability to do what he'd like, and he has had some dizziness and nausea, it hasn't been too bad.  He is excited to get off of it.  With time, his body will adjust. 

With that all said, yes, it has been an emotional roller coaster!  We truly appreciate the help and support we have received, and hope we can give that kind of love and support to others in their times of need.  Ultimately, we recognize that it is all in the Lord's hands and  those are hands we trust!  

We Like Good News!

In the last post, Mark indicated that he had gone to 45 mg. of Prednisone a day.  Unfortunately, it didn't go well.  His digestive tract was still being attacked by his immune system.  When he went back to 50 mg, he was okay.  But, he needs to get off of these steroids! Dr. Urba ordered an infusion of infliximab, brand name Remicade, to reduce inflammation in the bowels.  Wednesday, the 8th, Mark had the infusion and so far, it seems to be working.  He is now at 40 mg./day and doing well.  We hope that he will continue going down 5 mg. every 3-5 days.  

Besides causing major fatigue, another side effect of Prednisone is changes in the shape or location of body fat, especially in the neck and abdomen. He's not particularly fond of his thick neck and belly, but hey, it could be much worse! :)  

Good news, we have a new grandson! Mark Daniel Hornibrook was born on the 8th of January (his mother's birthday), the 8th child of Michael & Heather, at 8:05 am, weighting 8 lbs. almost 8 oz.  He is our 18th grandchild.  How's that for stats?!! 

Gradual Progress Continues...

The daily dose of Prednisone has gradually dropped to 45 mg. a day (which is still considered a high dose).  The goal is to get to 10 mg or less, then transition to hydro-cortisone which will be for maintenance as my body will no longer produce needed cortisol. While on this high dose of steroids I have been very fatigued, and can only do so much in a day before I entirely tire out. One to three naps a day has become my new normal -- and that is highly unusual for me!  If I am standing or moving I am wearing down, if I sit I can maintain, and if I am laying down I am regenerating. Occasionally, there is some nausea, which usually goes away with eating or resting.

Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down  or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.

Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.

Thank you for your love, prayers and good thoughts.