Gradual Progress

On Wednesday, December 4th, the blood draw analysis showed an elevation in liver enzymes.  The immunotherapy caused inflammation in the liver, along with the digestive tract and pituitary gland, as well as his skin (but the rashes are easily controlled with cremes.)  Wow, it is really doing a number on Mark!  

Monday, December 9, we got to see Dr. Urba which is always a treat.  He is starting the gradual decrease in Prednisone from 80 mg to 75 mg a day.  As long as Mark handles it well he will go down 5 mg every 5 days.  Side effects of Prednisone are not all that great, either.  He hasn't been able to sleep very well and it may be causing leg weakness. 

Overall, Mark is improving. The digestive tract and pituitary gland are both almost back to normal.  He has no nausea, diarrhea or dizziness and only occasional mild headaches.  His thyroid function seems be be improving with a moderate dose of Levoxyl. His liver enzymes are also working their way back to normal. 

Mark keeps thinking that he should have more energy, but it is taking time to regain his strength.  We spend most of our time either at home or going to doctor appointments, but we thoroughly enjoy our time together!

We appreciate the many blessings we have and find great joy in focusing on the real meaning of Christmas.  

Back Home and Loving It

I got to spend Thanksgiving in the Hospital. However, I had wonderful care, some delicious Thanksgiving food (the first real food in days), and a delightful wife that takes such good care of me, even when I don't look, smell, nor feel my best.

Seriously, the hospital staff at Providence Portland was outstanding! They were caring, knowledgeable, responsive, and respectful.  I had a comfortable bed, and they set up one for Ane, too, even bringing in a nice foam mattress for her. Our last night there, they even let us sleep from about 10 pm to 6 am - amazing!! It took a little bit to figure out what was happening in my body and how to fix it, but they got it.

Our children have also been incredibly supportive.  They provided the Thanksgiving meal, brought in our Christmas decorations from the shed (a big deal), had a fun time here, and cleaned up afterward. Our grandchildren have also been so sweet and helpful.  What a wonderful family!

We got to come home last Friday and have so enjoyed being here. Ane has worked hard to get the house Christmas ready, and how delightful it is. We love this Season of Giving, Sharing, Loving, Hope, and Joy. We all have our challenges in life, and this season is not clear of those either, but it is a time to reflect on the hope that is within us and be the most caring and sharing we can be.

Love and Gratitude fill our hearts, and we hope yours, too.

3-5% on the Bell Curve

Initially Mark had about a 3-5% chance of survival.  Once Mark said to Dr Urba, "That's over a 95% chance of death!" Very quickly, Dr. Urba responded, "Yes, but YOU could be the one to hit it out of the ball park!"  And in many ways he has!  His response to the different cancer treatments has always been incredible.  

This time Mark is in the 3-5% range of patients who have the most severe side effects to the immunotherapy drug combination, Yervoy/Opdivo.  He got not only the infected Pituitary gland, but also Colitis, as well as challenges with the Prednisone.  Oh boy!  BUT, there is a positive side to this.  His immune system has reacted aggressively which means it is also likely fighting those nasty cancer cells!  Of course, that's what we're hoping for -- the immune system to eradicate the cancer. 

He had to stay in the hospital one more day, so he missed Thanksgiving Dinner with the family, but that's okay.  We definitely didn't want to take him home until he was ready. There has been significant improvement today so the doctor is optimistic that tomorrow could be the day.  

We have so much to be thankful for!! 

Happy to go to the Hospital

We made it through the week-end without going to the ER.  Monday he had an appointment at the Providence Cancer Center.  Doug L. came over and helped me get Mark into the van.  He is so weak that he can't stand or even sit up.  We were taken to a room with a bed (not just the recliner chair typically used at the infusion center) and IV's were started immediately.  Fluids helped only a bit.  He continued to be extremely weak and nauseous  There was no way he was going home--we were actually happy that he was admitted to the hospital. Having him so sick at home was scary! 

The doctors we are working with conferred and have determined that this is not just from coming off of the steroids too fast, although, that could have been an initial contributing factor.  Now, he is dealing with another side-effect of the immunotherapy.  His immune system has attacked his colon causing colitis. Not only was he having constant diarrhea, but he also was not getting the benefit from the oral medications.  The doctor explained it this way.  When the colon is healthy it has microscopic bumps on the surface causing the colon to have a surface area about the size of a tennis court. With colitis, the surface becomes smooth diminishing the area in which nutrients and medications are absorbed to about the size of our hospital room. Another medication, Remicade (infliximab) was given last night via IV.  Today he has been able to keep food down.  He will definitely be here one more night, but more likely two.  Of course, it all depends on how his body responds.  It would be nice to be home for Thanksgiving, but we don't want to go home until we know that he is definitely on the mend! 

Before the double immunotherapy began, we had a feeling that there could be some challenging times.  It is proving to be so, but we are handling it well, especially with the help and support of so many.  We appreciate it, as well as all of your love and prayers!  

Oh, What a Week!

Mark seemed to be coming off the Prednisone so well -- we thought he had it licked!  That is, until he got to 30 mg/day. (He started at 90 mg/day which is an extremely high dose.  There are side effects of being on Prednisone so that's why the rapid taper, but it can't be too fast.)  Last Sunday he had extreme fatigue and stayed in bed all day.  He was supposed to go down to 20 mg on Monday but was concerned.  We never heard back from the endocrinologist as to what to do, so he took 20.5 mg.  Monday night everything really started falling apart.  During the night he had extreme nausea and diarrhea.  He was so dizzy and nauseous that he ended up on the bathroom floor for 45 minutes and I couldn't get him back into bed. He couldn't keep anything down. Finally, I called 911 at 5 am for help as we didn't know what was happening.  They came and checked vitals which were all fine, and indicated that these were symptoms of coming off the steroids too fast.  He went back up to 30 mg on Tuesday, but that night was almost as bad.  Wednesday morning we went to the cancer clinic where he got intravenous fluids for dehydration,  meds for nausea and some steroids.  When it was time for us to leave, Mark couldn't stand up because of the severe nausea, and I didn't want to take him home in that condition.  The doctor came back in to check on him and agreed that Mark could not go home.  A room was procured in the hospital and he stayed on IV's during the night which included some steroids.  

Thursday morning he felt much better and by noon we were on our way home.  As the day wore on he started feeling nauseous again and by night, he couldn't keep anything down including water.  Friday we went back to the clinic for fluids.  Before we left, he was given another intravenous dose of steroids which seemed to help.  He slept well in the evening.  

Saturday early morning the diarrhea and vomiting wouldn't stop so I talked to the on-call doctor.  The only thing she could suggest was going to the Emergency Room.  We didn't want to do that.  He was exhausted and wanted to be in a comfortable bed. Eric brought over some Pedialyte and Mark was able to keep it down at least some of the time.  He isn't dehydrated, but he is incredible weak and still nauseous much of the time.  He is now on 30 mg of Prednisone in the morning and 30 mg. in the evening. He hasn't been out of bed all day, and feels sick whenever he is awake.  Fortunately, he has been able to sleep.  He hasn't eaten anything for days so he needs nourishment but for now, he would rather wait until his Monday appointment to take the next steps, as long as we can keep him hydrated.  Overall, he is quite miserable!  

So...if he hasn't responded to emails or texts or calls, that's why!  Everything else in on hold until he feels better.  We're hoping next week he will have some major improvement.

We appreciate your prayers, love and support!

Adrenal, Thyroid, Heart and more

Last week Mark met with an endocrinologist who indicated that his thyroid and testosterone levels are off because of the inflamed Pituitary Gland.  With appropriate medications, these levels will likely go back to normal.  Dr. Hopkins is taking the dose of Prednisone gradually down, but it is likely that Mark will have to take a low dose of steroids for the rest of his life as the irritation to the adrenal gland by Ipilimumab  almost always causes permanent Adrenal Insufficiency.  By the first of the year we should know if that is the case. 

Today we met with Dr. Hopkins again.  Mark has done amazingly well coming off of the Prednisone.  He has occasional dizziness and nausea, but it's getting better every day.  He will be down to 10 mg a day by next week.  He will stay on 5-10 mg/day for a week or so and then transition to a low dose of Hydrocortisone until lab work is done to see if his adrenal gland is producing cortisol.  

We also met with the assistant to our cardiologist last week.  She scheduled a Cardioversion for November 14th if his heart was still out of rhythm, but earlier this week it went back to normal rate and rhythm, so that won't happen tomorrow.  Yea!  And how did he know that his heart was back in rhythm?  Mark bought a new Apple watch, used it to do an ECG, sent the results to the cardiologist who responded that Mark was back in sinus rhythm.  How cool is that?!  He is also off of one of three heart meds, Metoprolol.  Mark has so many medications right now!  He created a spreadsheet to keep track of what he is taking, how much and when to take them.  

What would we do without modern medicine?!! Actually, we'd both be gone.  I would have died in childbirth back in 1979 and Mark's melanoma in 1990 would likely have taken him.  

Life is good and we are blessed! 

One Thing to Another...

Friday evening Mark noticed that his heart was beating extra fast.  At first he wasn't too concerned, but it continued throughout the evening and returned Saturday morning.  Time to take action!  He texted Dr. Urba who encouraged him to go to the Emergency Room.  Mark was there from noon to four and was given a small dose of Metoprolol and released.  It did nothing, so he returned to the ER a few hours later.  This time he was given intravenous meds which did reduce the speed quickly, but was not sustained.  He was released with prescriptions to thin the blood and regulate the rhythm, as well as to slow it down.  Those drugs have helped but he still has to take it easy.  If he does anything other than sit, his heart rate quickly jumps up to 120+.  So...he sits at his computer and works -- that is not uncommon for him! And he avoids stairs.  In the morning we will set up an appointment with a cardiologist.  

One thing leads to another and another and another!  Cancer led to the combination Immunotherapy, which led to an inflamed Pituitary gland, which led to steroids, which led to increased heart rate and intermittent A-Fib, which led to three more drugs, which leads too...?? (hopefully a normal heart rate, a normal  Pituitary gland and NO cancer!!!)

But it's all good - we can do this!! 😊

How can that happen so fast?

When we got back home from the MRI, doctor visit and drug store I took my first round of anti-nausea, steroids and super pain killers. After 6 hours, I expected the pain and nausea back, but it never came back. Where did it go? The doctors thought I would need pain killers for days, maybe longer. I slept through the night, with only super mild occasional reminders of the pain I previously had. The steroids kicked in and I had a very energetic and productive day. All is well! it is amazing to go from feeling so bad to feeling so much better in such a short amount of time!

I'll be on the steroids for a while as they gradually taper off, but for now I feel quite normal and off to the races:-).

Thanks again to doctors, medical inventors, faith and prayers!

2nd Infusion = Enlarged Pituitary Gland

Mark's 2nd Infusion with Yervoy and Opdivo was one week ago - Monday, October 21st.  The first infusion had limited side effects -- rashes that can be controlled with prescription creams, and some fatigue. But, this time was not so easy.  The day after this infusion Mark had some dizzy spells and nausea.  On Wednesday a headache came on that would not go away.  Initially, Tylenol helped but as the week wore on, the pain became more intense, especially at night.  Fatigue became more pronounced and the nausea was almost continual.  The nausea would subside when he would lie down, but the headache would intensify.  He could never get comfortable and away from some kind of discomfort. Saturday evening he had some confusion - not recognizing the names of some of our grandchildren.  He felt like his brain just wouldn't connect the dots - it felt blank.   Sunday evening he came home from meetings in the evening totally spent, with his head pounding.  If he would sneeze or bend down to pick up something, he felt like his head would explode.  He slept for a few hours, but by early Monday morning (today), he was feeling trapped with pain, nausea and exhaustion.  Mark  texted Dr. Urba with more details of his symptoms.  Dr. Urba immediately ordered an MRI.  Within a half-hour Mark got a call that he could come in at 10:15 am.  It was 9:40 at the time so we left immediately.  

After the MRI we had an appointment with Dr. Urba and his assistant, Amy.  They pulled up the results of the scan and showed us that the pituitary gland which is normally quite small, was enlarged.  This is one of the side effects that can happen and one that needs to be caught early, as it can cause irreversible issues.  The Pituitary gland is the master gland that governs all other glands and hormones in the body.  Mark will go on Prednisone, a steroid to decrease inflammation, for several weeks to possibly a month to get the gland back to normal.  Infusions will be on hold until this situation is rectified.  Mark was also given prescription pain and nausea medications.  Shortly after taking his first dose of each, he felt better than he has felt in days.  Hallelujah!  

Again we are thankful to have an amazing doctor who is so responsive, for the miracle of modern medicine, and for your faith, prayers and loving thoughts!!!  

First Double-Immunotherapy Infusion

We're at the Providence Cancer Infusion Center just hanging out while Mark gets his first infusion of
Nivolumab (Opdivo) and  Ipilimumab (Yervoy).  Opdivo takes 30 minutes and Yervoy takes 90 minutes, plus blood draws, doc appointment, set up, waiting time, etc.  It will be about a 4 1/2 hour routine every three weeks. (Not bad!)



Dr. Urba reviewed the PET scan with us which showed that all of the tumors are resolved, but that doesn't mean that there are no cancer cells.  It takes millions of cancer cells to form a tumor.  There can be 100,00 cancer cells in an area, but not show up on a scan.  We know from past experience that each time Mark has gone off the medications, the cancer cells spread and grow quickly.

The medications that Mark has been on for the past several months, Mekinist and Taflinlar, have done a fantastic job of shrinking the tumors, but these meds will not eradicate all of the cancerous cells.  Having less cells to fight may give these new medications a better chance of a complete and durable response.

Mark will have 4 treatments with both drugs, every 3 weeks, and then will continue with the Nivolumab for a total of 2 years.  Last time we had one year of immunotherapy which was not durable, but did shrink and keep the tumors away for a year. We are hopeful that this regiment will do the job and finish off the cancer. But if not, we will continue playing "whack a mole" every time the cancer returns.  Hey, it's been 7 1/2 years already, and life has been good, so we can continue playing that game, as well.

Medicine and Miracles

Last Friday Mark had a CT scan and today we met with Dr. Walter Urba.  First he had us summarize the amazing history of Mark's cancer with an assistant.  Dr. Urba specifically asked Mark to tell her about how fast these drugs worked in alleviating the pain this past March.  It was literally less than two hours.  We asked how that was even possible.  Dr. Urba shrugged his shoulders and had no answer, then he started humming the tune to the twilight zone.  Another miracle? 

Next we looked at the scans.  While there are still tumors in his liver, they are definitely smaller, as is the large one next to his spleen.  That is great news -- the meds are doing their job!  These drugs are not a cure, but they have been very successful in shrinking Mark's tumors. Eventually, the cancer figures out a way around this therapy so it is not a long term solution.  Dr. Urba's initial plan is to have Mark stay on these drugs for 1-3 months before starting the immunotherapy drugs.  Dr. Urba will meet with Dr. Curti in the next few days to discuss which immunotherapy drugs to use in the next round of treatments and when he thinks we should start.  We'll know more in a few days.  Mark has almost no side effects with these drugs, so for now we can continue with life as normal -- maybe even do a bit more travel! 

Thank you for your thoughts and prayers!!

Moving Forward

This past Monday we met with Dr. Walter Urba.  He was amazed with how quickly Mark responded to the Tafinlar and Mekinist! He is about to retire and in his entire career he has never seen anyone respond that quickly. Mark continues to feel better than he has in months! The pain is almost totally gone. The side effects are minimal, so Mark is back to life, almost as though there is nothing to be concerned about.  I must say that it is much easier to deal with 'cancer' when there is no pain. We have accepted this new reality and are feeling much more at peace and hopeful.

The plan is to stay on Tafinlar and Mekinist for two months so the tumors will continue to shrink.  We get to continue with our planned travel for the next 2 months.  Another CT scan will be done in early June followed by a visit with Dr. Urba on the 10th.  His current recommendation is to move to a protocol that he hopes will eradicate the cancer cells.  We had hopes that Ketruda had done that.  The new treatment will be infusions about every 3 weeks of Opdivo (like Ketruda but from a different manufacturer) along with Yervoy, which Mark has not used.  In studies the combination has been more successful in durability than either of them individually.  The down-side is that the combination is more toxic.  When reading the possible side-effects if sounds awful, but then it was the same with the Ketruda, and Mark's side-effect were again minimal.  So, there is no need to fret.  We simply won't know how he reacts until he is on the treatments.  They could be serious enough, though, that we will need to stay close to home until we see how he responds.  

So...we are moving forward with faith, a great doctor, contingency plans and living life to the fullest right now! 

Amazingly Fast

Saturday the 23rd I flew home instead of going on a cruise with my granddaughters, Katie and Aimee, because the cancer pain was so great. The prior week had gone from Tylenol to Vicodin with several sleep deprived nights due to increased pain. Friday night I couldn't sleep through the night even with two Vicodin every 6 hours. Saturday on the flight home I was feeling so much pain after only 4 hours of Vicodin that I could not sit still but had to walk around the plane.

Tyler and Kelsey kindly met me at the airport with our van and a pad in the back so that I could lay down on the way home. When we got home the Tafinlar was there. I took my first two pills at about 8 PM and a couple of hours later went to bed. I awoke at about 1:30 am and remembered that I should have taken my Vicodin at 11 pm, but I didn't feel that bad so I went back to sleep, awoke again at 2:30 and took them just so I would sleep through the rest of the night, pain free. Those were the last pain pills I needed. The pain was gone within hours!!! Sunday I was a bit fatigued but pain free.

The rest of the week I have felt only moments of very mild pain and have increased in energy and clarity. As bad as the week was last week this week has been equally wonderful and progressively better with an amazingly quick start! We have used these drugs before (Tafinlar and Mekinist) but I was totally amazed at how quickly the pain went away.

We will meet with Dr. Urba Monday to determine next steps and a longer term strategy.

Thank you again for your care, concern and faithful prayers.

The Culprit has been Found

An upper GI a week ago showed no ulcer - which is what we were hoping for.  This past Monday, March 18, Mark had a CT scan and met with Dr. Urba immediately afterwards.  He had been in his office watching it live.  After visiting for a bit, he indicated that the scan did not look good.  He showed us multiple spots in both sides of Mark's liver, some as large as 1 inch in diameter.  Another tumor was found on the pancreas which is likely what is causing the pain.  Each time Mark eats he has intense pain about an hour afterwards when the food reaches his stomach.  The enlarged stomach evidently puts pressure on the tumor.  

Dr. Urba went back to the CT scan in December to see if they missed something, but again found no evidence of tumors.  They must have been too small to see on a CT, but Mark felt it.  

Wednesday we flew to CA to visit Mark's family.  The pain continued to increase with no relief using extra-strength Tylenol.  Wednesday night he slept no more than 2 hours.  By morning he was exhausted, in intense pain, and feeling trapped.  He texted Dr. Urba who encouraged Mark to try the Vicodin again.  He had a negative reaction to it a few nights ago so he was apprehensive. This time he responded well and had some needed relief.  Because of the intense pain, Dr. Urba felt it best to shrink the tumors as fast as possible.  He prescribed Mekinist and Tafinlar, the targeted medicine that shrunk the tumors so well early on.  They will be delivered tomorrow. Once the tumors are smaller we can determine which course of action to take next.  Keytruda worked well in getting rid of all the tumors and keeping them away for several years, but we now know that it will not be a long-term cure.  There are other options, though, which we will learn more about.  

Obviously, this is not the news we wanted, and it has been tough!  But we are accepting our new reality with hope. Ultimately, we trust in our loving Father in Heaven who knows what is best for us and our family.

With appreciation for all of your love and support! 

The Investigation Continues

The pain in the abdomen decreased for a while in December.  After the first of the year the pain continued to increase in intensity, but would still come and go, although never going away completely.  Several weeks ago, it became much more severe. What is causing it?!  Last Tuesday Mark had an ultrasound to determine if there was a hernia but nothing was revealed that was out of the ordinary.  After consultation with our doctor and oncologist, we believe it may be an adhesion possibly caused by scar tissue from the surgery in September 2016 to remove the tumor in the adrenal gland.  That was a 7-hour surgery so certainly could have caused some drying out of organs, as well as creating scar tissue.  Dr. Urba has ordered another CT Scan and this week we will contact a gastrointestinal specialist who has been recommended to us.  The pain has been enough to keep him from sleeping well even with over the counter pain killers.  It sometimes causes nausea and today he noticed that he had pain after eating.  Certain positions hurt more than others.  So...on we go with more possible complications from the cancer, BUT as far as we know, there are still NO active cancer tumors!  We'll take it!!