Introduction

Late February of 2012 Mark was diagnosed with stage 4 Metastatic Melanoma Cancer. This is written for our family and friends who have so caringly expressed a desire to know of the current situation. We so appreciate the love and support that has been shown to us and we lovingly empathize with and pray for many of you that have had or are currently going through trials of your own. In love, hope and faith, Mark and Ane

Monday, April 3, 2017

CT Results Are In

Today we met with Dr. Urba to review the results of the CT Scan done last Friday.  Because Mark has been feeling so much better we were confident that results would be positive, and they are!!!  All tumors in soft tissue are basically gone. There is a mass in the area where the tumor in his adrenal gland was removed.  It is the about the same size as in the last scan, so while it hasn’t shrunk, it hasn’t grown.  Lesions in the bone are harder to tell with a CT, but they obviously have shrunk since his pain has continued to decrease.  Whether there are still live cancer cells there, we won’t know until Mark has a PET scan in 12 weeks. 

Side effects are minimal - just some skin rashes on his face and ears.  Fatigue is the most common, affecting about 80% of patients.  Back in December and January he was extremely fatigued, but has continued to gain more and more stamina.  It seems that for him, the fatigue is more associated with the tumors than the medication. Once again, we realize how fortunate we are!   

This was his last infusion with Galectin.  Infusions will still be every three weeks with Ketruda only.  For how long?  Most likely for a full year or possibly longer, depending on how he responds.  At any point the tumors could become resistant to the drugs and start growing again, at which point we would try another treatment. They could stop growing, but not go away. Side effect could kick in and become a deterrent.  Of course, our hope is they will DISAPPEAR and NEVER RETURN! 

It was awesome seeing Dr. Urba again!  He has become a dear friend.  While buying lunch in the cafeteria to take up to Mark, Dr. Urba saw me and motioned for me come over and insisted that he pay for our lunch - a kind gesture.  Our appointments with him are always much longer than with the nurse practitioners, as he just likes to visit.  We thoroughly enjoy those visits which are about every three month.  The next time we see him will be right after the PET scan.  We’re keeping our fingers crossed for that one!

At the first of the year we were gearing up for a tough go of it, as least for a while, although we always had hope that the treatment would work.  We just didn’t expect the side effects to be so minor.  Mark is back to full steam ahead.  After 5 hours at the Providence Cancer Center, we bought plants and planted about half of our garden – no naps and he feels just fine.  Well, we’re both tired, but we aren’t young pups anymore!

Thank you from the bottom of our hearts for your faith, prayers, love and support.  We think of so many others who are going through challenges and our hearts go out to them.  Life can certainly be challenging, but through it all, we can find peace.  We just saw this video that we’d like to share.  Go to  https://youtu.be/Ly9xk59Qkfc .

Wishing you joy and love this Easter Season,

Mark & Ane


Monday, March 13, 2017

Fourth Infusion and Feeling Fine!

Today Mark had his fourth infusion.  We got there around 1 pm and left at 5:30 pm - it seemed a bit slower than usual.  In three weeks he will have the last infusion of Ketruda combined with the clinical trial drug Galectin.  From then on our visits will take much less time with just 30 minutes of Ketruda along with blood draws, a doctor visit and waiting for the results of the lab work before the infusion can begin.  The Galectin took an hour, plus an hour wait before starting the Ketruda.  

Chris who supervises the clinical trial told us today that there are currently 6 patients on this regiment at Providence Portland.  One man who has been on it for over a year, has almost total shrinkage of tumors.  The other four have unfortunately not had a positive response.  How sad and disappointing!  Mark is doing amazingly well!!  Not only are tumors shrinking, but the side effects have been minimal.  He just started having some skin rashes which are fairly common and can be treated with good creams. Fatigue is the most common side effect and he seems to keep increasing in his energy level as the tumors shrink.  

Mark found a report of the clinical trial of Ketruda (pembrolizumab) completed just a year ago.  The results are definitely the best yet for metastatic melanoma, but reading through it doesn't sound all that promising. Today we felt the reality of how blessed we are when we realized that only two of six in this new clinical have had positive progression, and he is one of them!

Study Details

KEYNOTE, a phase Ib trial, enrolled 655 patients treated. Patients were treated with pembrolizumab until disease progression, intolerable toxicity, or investigator decision.

At a median follow-up of 32 months, 358 patients (55%) had died. At 36 months, the overall survival rate was 40%.

A total of 95 patients (15%) achieved a complete response. Among them, 61 (64%) stopped treatment after complete response. Only 2 of the 61 patients who stopped treatment after complete response experienced disease progression. One of the two has been restarted on therapy, but it is too early to evaluate response, Dr. Robert said.


The most common treatment-related adverse events were fatigue (40%), pruritus (28%), and rash (23%). Only 8% of patients stopped pembrolizumab because of side effects.


Wednesday, February 1, 2017

Shrinking Tumors!!!

The two tumors that are just under the skin are definitely shrinking. Just days after the second infusion there was a dramatic shrinkage of the tumors that we could feel, near the surface. Ane and I are elated!!

Thanks again for your faith and prayers!! Also for the great doctors that have been working on this cure for decades.

Saturday, January 28, 2017

Second Infusion and feeling better

I had my second infusion yesterday at the Providence Cancer Center. It takes about 4 1/2 hours with two different drugs, blood draws, meeting with our nurse practitioner, etc. So far the only side effect we've noticed is fatigue. So... I slow down a bit and take naps. That I can do!

It seems to me that there is less pain in my hip and shoulder tumors. Maybe the medication is working! I still use my cane to relieve the pressure on my hip joint.  Less pain is a welcome relief!

The tumors we can feel, just below the surface, might be getting smaller. At least they are not getting bigger. We are hopeful.

Thank you for your heartfelt concern, good thoughts, faith and prayers! It's already working!!

Sunday, January 8, 2017

Keytruda here we come!!

I had my first infusion Friday. It was 1 1/2  hours of IV feeding with an hour break in the middle. The first hour was the clinical trial drug Galectin Inhibitor and the last 30 minutes was the Keytruda. The most common side effect is fatigue - and I got that! I don't have much energy. I sit and lie around most of the day. I have some occasional nausea, but not too bad. We are hopeful that the fatigue means the immune system is busy taking down the cancerous tumors:-) I also still have the pain from a tumor in my left hip which makes me hobble a bit and pain in my left shoulder and a few other places. My feelings seem a bit tender, too.

I am so grateful for all that I have. I have a wonderful wife that helps and supports me through everything!! I love her so much. I have a delightful family, our children and their spouses and their children are just amazing. My mother and sisters are also so supportive and loving as well as their spouses. I have wonderful supportive friends at church and work - I am so amazingly blessed!! I know why I am here on this earth and where I am going afterwards, and I know that I have a Heavenly Father that loves me and has wonderful plans for me. I am blessed in so many ways!!

I hope you have a wonderful day!

Monday, January 2, 2017

Is this what it feels like to be a real cancer patient?

My first radiation therapy was Friday on a tumor in my spinal column that is pinching nerves and one in my pelvis also causing pain. Afterward the nurse suggested I take an anti-nausea pill "just in case". I did. She left and the doctor came in. After a few minutes I asked her if the nausea side effect was just that or could it turn into vomiting? She said just nausea. A minute or so later I asked if I did have to throw up where would she like me to do it?  She looked at me, as if to say "Really, I just said that wouldn't happen", but she could see I was serious so she handed me a plastic trash can which I promptly filled!

The doctors involved indicated that the pain might get worse before it got better and they were right! I was amazed. Thanks to Oxycodone for pain relief and an anti-nausea medicine along with ginger bread, ginger ale, ginger chicken, etc., we have made it through. I think this must be more like what real cancer patients go through. The past few years I have been blessed with cancer side effects light.

We have one more radiation session this coming Wednesday and start infusions of Keytruda and GR-MD-02, a Galectin Inhibitor - it sounds like a new Star Wars weapon to restrict the inhabitants of the Galectin Star System. Early on we were told that Keytruda was seeing 40% success rates. Which is true: 40% get positive responses to the infusions but only 15% have complete response and something less than that are durable. But, some are durable! We hope to be in that group!!

Thank you for your faith, prayers and good thoughts. We are sending them back to you as well.

With Love, Faith, Hope and Gratitude,
Mark and Ane



Wednesday, December 28, 2016

Happy 65th to Mark!!!

Today we are celebrating Mark's 65th Birthday!  He mentioned this morning that the pain helps him feel like he is 65!  :)  Last time we were at the doctor he was asked to rate his pain.  He looked at the chart with all the happy to sad faces and descriptions of each from 1-10.  Number 2 isn't much pain, but the description was "loss of sense of humor".  Mark was aghast!  He couldn't imagine losing his sense of humor at a 2 - maybe a 8 or 9, but definitely not a 2!  He figures his pain level is now about a 6-7, and his his sense of humor is still intact!!

Mark has never been one to take pain medications, but he has decided that they are a great blessing! Over the counter drugs are no longer able to alleviate the pain, so he has been taking Oxycodone. Thankfully, it has taken the edge off and allows him to sleep.  Tomorrow we meet with the radiologist to do mapping for radiation to help ease the pain in his hip and adboman caused my tumors in his spine and hip bone.  Afterwards, we will meet with the clinical trial specialist who will give us more information about a different clinical trial that Dr. Urba discussed with us yesterday. This one uses Keytruda, an anti-PD-1 drug.  Mark's biopsy showed high levels of PD-L1 which means this drug has a better chance of showing positive results.  Along with Keytruda, Mark will be given GR-MD-02, a complex carbohydrate made from apple pectin.  Research in the lab suggests that GR-MD-02 given along with pembrolizumab (Keytruda) could more effectively stimulate the immune system to fight cancer cells.  We had been feeling more inclined to use Keytruda instead of Yervoy, so this clinical fits better with what we hoped for.  Mark's first treatment will be sometime next week, and will continue every three weeks as long as it continues to be effective.  We will work out the details tomorrow.

Yesterday as Mark was researching these options, he realized that total cure is still only 15%, but that is so much better than it was a few years ago!  In the past when Mark has pointed out low cure rates to Dr. Urba, he has always been quick to exclaim that he could be the one to hit the ball out of the park!  If past treatments are an indication, that is certainly possible, although we don't believe that would be the case without your faith and prayers, so THANK YOU, THANK YOU, THANK YOU!!!


Monday, December 19, 2016

No Tumors in the Brain

Mark had the MRI last Tuesday and found out Wednesday that there are NO tumors in his brain! Yahoo!! Wednesday Dr. Diego removed one of the tumors on his chest for biopsy to help determine the next treatment. 

Today we met with Dr. Urba.  He explained another option that may be available.  There is a current trial which uses a virus injected into a tumor signaling to the immune system what to attack. Yervoy is then given to boost the immune system.  It's a small study, but so far has shown 57% positive response in shrinking tumors, which is a high response rate for any treatment of metatastic melanoma.  Side effects for the injection of the virus are minimul. Yervoy isn't as kind, but is different for every patient. Typical side effects are fatigue, diarrhea, itching and skin rash.  We're studying more about the clinical trial and waiting for the results of the biopsy to determine if Ketruda would be a good option. It depends on the level of PDL1 on the surface of the tumor.  We'd prefer not using Yervoy and Ketruda together as the level of toxicity is much higher.  We hope to have a decision made this week so he can start the treatment soon after Christmas.

The tumor in his lower spine must be hitting a nerve as it is causing pain in his right hip (there is no tumor in that area).  Pain relievers are currently enough to keep him going.  

How grateful we are for Dr. Urba and all those at the Providence Research Center who have been so kind and concerned.  They have truly blessed our lives.  Thank you for your love and prayers!  

Have a wonderful Christmas,
Ane

Friday, December 9, 2016

What a Week!

OK, so the good news is I don’t have any tumors in my feet or critical organs!!

I’ve had some pain in my abdomen for a week that hasn’t gone away so Monday we emailed Dr. Urba.  He scheduled a special, not normal time to meet with us on Tuesday. We got a PET scan on Wednesday in spite of the insurance company refusing to pay for it at the last minute. (Dr. Urba thinks he can get that fixed). Dr. Urba called us before we got home from the scan and said there are lots of little tumors all over. In our second special appointment this week, today, we saw the scans with tumors from my face to my shins, some in soft tissue and others in bone. None in critical organs. It looked like around 20 or so.

An MRI of my brain is scheduled for next Tuesday to be sure nothing is growing there. A biopsy of one of the close to the surface tumors will be done soon to determine if we do anti PD-1 alone or combined therapy with Yervoy. I will likely start with immunotherapy intravenous infusions every two to three weeks for a year or two the week after Christmas. It will likely make me weak and can cause diarrhea and rashes but might not. Everyone is different. The combined therapy is more toxic but can be better depending on what the makeup of the tumors are – that is what the biopsy will tell us. The success rates sound really good with 50% - 60% of patient's tumors shrinking and 40% of patients experiencing durable cures.  Those are much better numbers than it was with the options available when we first started this journey. We will likely still be able to travel and do most of what we get to do now – maybe… a little slower:-)

We are so grateful for each of you and so appreciate your love and support!!  Dr. Urba has been amazing to work with!  Ane has also been so wonderful to be with through all of this.

Warmly,

Mark

Tuesday, November 1, 2016

Back into the Swing!

Mark is back up to full speed and keeping quite busy, which he much prefers! 

On Monday, the 24th of October, we met with Dr. Urba.  Of course, he was pleased to see Mark looking and feeling so good!  For now, he would like Mark to stay off the drugs and see what happens.  He will have another PET scan after Christmas. If tumors are present we will then discuss the next steps.  Dr. Urba is concerned that the meds he has used for the last 4 ½ years may not continue to work as this last tumor grew while on the drugs.  It may be time to move to the immunotherapy drugs of which there are several options.  The good news with these drugs is that they have the possibility of cure, which the targeted drugs were never meant to do.  The downside is that Mark may not have the quality of life that he has enjoyed. Who knows, though, he may handle them just fine. Either way, that’s a decision for the future. For the time being, Mark is healthy and we are simply enjoying every day that we have together!!!  

Thursday, September 29, 2016

Dr. Diego got it all!

We met with him yesterday and he reported clean margins around the tumor from the pathology report.

I am feeling better every day.  I'm up and about most of the day and sleeping well at night.  I haven't used any pain meds for days now.  I still need to be careful what I lift and of course it still hurts a bit.  But overall I have more energy than before with that energy sucking tumor out of me.

We will meet with Dr. Urba in about a month to determine the next steps.  As for now I am off all drugs.

I am so grateful for your faith, caring and prayers and am so glad to be here with you. We are now over four and a half years from the first detection of wide spread cancer!  We have been so blessed to be here for so long.

Love,
Mark

Saturday, September 17, 2016

The Tumor is Out!

Surgery was yesterday - Friday, the 16th.   Dr. Diego came in before surgery and told us that he hoped it would take 2-3 hours, but that it could certainly be longer.  It was longer - 5 1/2 hours, but all went well and the tumor was removed!   It took longer than expected because Mark has a large spleen and it took a lot of maneuvering to relocate the pancreas and kidney to get to the adrenal gland. The incision for the removal is only 2 inches long with 3 small incisions for the arms of the robot. 

Last night was a bit rough, but today he is doing marvelously well!  The doctor thought that Mark would be discharged on Monday, but another doctor just left and saw no reason that he couldn't go home later today or at least by tomorrow!  Wow, we are SO thankful for modern medicine! Laparoscopic surgery makes recovery so much easier.  Mark should be back in the game fairly quickly, and he is ready!  

Thank you for all of your faith and prayers!!! 

The morning after!! 


Friday, September 9, 2016

Surgery Scheduled

We met with and were pleased with the surgeon, Dr. Diego Muilenburg. A CT scan was necessary for him to see the details more clearly than the PET showed, and that was done last Saturday, the 3rd.  The tumor has grown 5% in two weeks so while it isn’t growing fast, it is growing, so the sooner it is removed the better.  Dr. Diego has scheduled the daVinci Robotic surgical machine for September 16th.  The plan is to make 4-5 small laparoscopic incisions, but there will have to be one larger incision to remove the tumor which is currently 2 by 3 inches.  If all goes well Mark should be home in 2-3 days, We’re happy to have daVinci!  Mark just looked at pictures of it online and exclaimed, “Yikes, what was I thinking?!”  I commented that it looked better to me than a big knife held over him!


We will be at Providence Portland Hospital one week from today at 9:00 am.  (Yea, not the early bird check-in!) We feel very good about the way this is working out.  

This verse brought comfort, “…be of good cheer…for I am in your midst, and I have not forsaken you:” We certainly feel that, and also appreciate the love and support from family and friends!  Thank-you!!

Monday, August 22, 2016

Bad News, Good News

On the 11th of July we met with Dr. Urba.  Since Mark looked so good he saw no reason for a PET scan even though it’s been a year since the last one.  He did have blood drawn, as usual.  Several days later Mark saw the lab results and e-mailed Dr. Urba as the LD total count was bit high. Normal is 100 to 210 and it was 275.  The only other time that has happened was when the tumor was growing in the adrenal gland.  Dr. Urba agreed that it was high but also indicated that this test is not a very accurate or definitive test for metastatic melanoma.  He ordered another blood draw for one month later and indicated that if it was still evaluated we would proceed with a PET scan.  On August 11th Mark had another blood draw and the count was still elevated and a bit higher than before at 298.  Dr. Urba ordered a PET scan which was done last Friday, the 19th


This morning Dr. Urba called to tell us that the PET scan was not totally clear – a tumor is growing once again in the same adrenal gland. He is a bit baffled as to why that is the only place, but that is GOOD!  The adrenal gland can be removed and studied to determine what may be different.  He has already called one of the best surgeons in the US that deals with this type of cancer surgery and Dr. Vern agreed that removing the adrenal gland would be best.  Dr. Vern is in Tampa, Florida but he recommended a surgeon in Portland whom he personally trained and considers excellent.  Dr. Urba has contacted Dr. Diego Muilenburg.  His office will contact us to schedule an appointment to discuss the next steps and whether the surgery can be laparoscopic or incision. For now Mark will stop using the current medications as he has started having nausea.  He might as well get a rest from the side effects.  We will keep you posted as we learn more.  We are SO grateful that we are not immediately facing the more invasive treatments!  All is well!! 


Wednesday, February 17, 2016

Four years ago TODAY!!!

Four years ago today as we were celebrating a late Valentine’s Day we found out that Mark had some tumors in his lungs. That day is stamped into our memory, especially the phone call during dinner that he needed a CT scan as soon as possible.  We went right back to the lab for the scan and later in the evening while shopping the call came from our doctor indicating that a biopsy was needed.  Those calls should have put us in high alarm mode, but we were having such a good day that it didn’t affect us much.  It wasn’t until the following day that we grasped the gravity of the situation – that Mark probably didn’t have long to live. 

Well, he is still going strong!  When we saw Dr. Urba this past Monday he indicated that he saw no need for a scan since Mark is feeling and looking so well.  He will stay on the medications and see Dr. Urba again in June.

Dr. Urba summarized for us a report that was recently published indicating that there are a small number of patients who have been on the combination therapy for 5-6 years and are still progression free.  Part of the conclusion was that those who had the most positive responses had less invasive situations. Dr. Urba emphasized that Mark’s diagnosis was as bad as it could get, so his response is highly unusual.  

Today we’re going out to celebrate Valentine’s Day at the same restaurant!  How grateful we are!!! 

Tuesday, November 17, 2015

Fun Visit with Dr. Urba

Yesterday we had an appointment with Dr. Urba. He has become a good friend and we thoroughly enjoy our visits with him!  He probably enjoys seeing us, if for no other reason than Mark is doing great.  It must be tough for an oncologist when a patient takes a turn for the worse.

As for Mark, he has been on Tafinlar and Mekinists for almost seven months and is just now having some minor side effects - fatigue and leg cramps.  Because they are so minor Dr. Urba has no desire to pulse the drugs - leave well enough alone!  There are no signs of tumors. The echocardiogram done of his heart last week showed no tumors and the medication hasn't done any damage.  He also saw an opthomologist and there has been no damage to his eyes from the drugs.  All is well!

We will see Dr. Urba in three months.  These are the kind of visits we like to have!!!

Tuesday, September 1, 2015

All is Well! - by Ane

We met with Dr. Urba yesterday. Mark is doing great!  He has been on the combination drugs, Tafinlar & Mekinist, for 4 months this round, and will continue.  He has had no negative reactions. There are a couple of serious side-effects that we'll need to watch for.  A particular heart problem is rare, but possible, so Mark will have an echocardiogram before our next appointment in November. These drugs can also cause retinal problems so he needs to see an opthamologist.

Dr. Urba indicated that he has heard of several patients who have been on these drugs for six years! (That's the longest possible since that's when the first trials were conducted.) In the future we may pulse the drugs (two months on, two months off) in hopes that it will extend its effectiveness.  He won't go off again for very long because, as we have experienced, the tumors always come back. We're just thankful that these drugs are working so well!!!

Sunday, July 5, 2015

Rumors of Tumors! - by Ane

After Mark had been on the drugs, Tafinlar & Mekinist for a couple of weeks the pain in his abdomen subsided so we knew the meds were working again - shrinking the tumors!  YEA!!  He had been on them for 7-8 weeks when he started having some discomfort in his abdomen again.  Because the pressure/mild pain was in the same location we assumed it must be the tumors growing again.  If they were growing while he was on the medicine that meant one thing - the cancer had found a way around these drugs so they would no longer be effective.  A pall settled over us as we thought of what the future could be. Mark e-mailed Dr. Urba to let him know. Dr. Urba said that he listens to his patients, but he really listens to Mark because he has always been right.  While he/we don't like to have PET scans done so often, it would be necessary if we were to proceed to another treatment.  Last Tuesday, June 30th Mark had the scan.  Within an hour of its completion Dr. Urba called with the wonderful news that the tumors were gone!!!  Mark indicated to him that he had never been so happy to be wrong!  We don't know what caused the discomfort, but it's not the cancer!  How relieved and delighted we are!!!

Today we are celebrating our 37th wedding anniversary. How well we remember our hope that he would make it for our 35th.  Today we are especially grateful to be together!

We are well aware of others who are not having the same positive results and our hearts ache for them.  Perhaps Mark had the pain to help us to be more sensitive and empathetic.  We also know that it could happen to us at any time. These drugs are not supposed to cure, only stall, and we don't know for how long.  We are learning to enjoy the time we have together each day!


Sunday, June 21, 2015

Bigger is not always better...

Our last appointment with Dr. Urba was Monday, June 15th.  He showed us the scans of the past PET (done on April 22nd) and indicated that the size of the tumor in the adrenal gland was about 2 inches which was bigger than what we had thought.  Since it is in the same place, we assume there were still cancerous cells alive in that area when I went off of the meds in December, only four months earlier.  This time I will stay on the combination drugs, Tafinlar & Mekinist for a year.  At that time we will determine whether to stay on them consistently or opt to pulse the drugs on and off every 3 weeks.  That will all change if there is any indication that the tumor is not shrinking or is continuing to grow. I’ll continue to have regular check-ups every couple of months.   Thank you for your warm thoughts and heartfelt prayers.

Saturday, April 25, 2015

Early Catch - by Ane

For a week or two Mark has noticed a slight pain in his abdomen on the left side. This past Monday we e-mailed Dr. Urba and he immediately ordered a PET scan which was done yesterday.  Last night Dr. Urba called, but we were unavailable so didn't get the call.  He left a message saying he would try again.  If the scan was totally clean we felt sure that he would have told us in his message.  That made for a rather restless night - wondering what the results would be.   Dr. Urba called back this morning (bytheway, he is out of town on vacation - amazing doc!).  He hasn't seen the scan himself, but Dr. Curti read it and let him know.  There are two small tumors - one in the soft tissue of his thigh and the other on his left adrenal in his abdomen.  Mark had some meds left over so he can start taking them right away while waiting for a new prescription.  While the tumors are back sooner than we had hoped for, they are small and not in vital organs.  Basically, we just caught it early!  We expect the medication to do it's job again.  We have SO much to be thankful for!!!