Amazing and Wonderful Blessings!!!

Last Friday, Mark had another PET scan, and today we met with Dr. Urba.  As we expected, there continues to be NO evidence of active cancer anywhere in his body!  Mark started Keytruda one year ago, with infusions every three weeks.  His side effects have been minimal so he could stay on it longer, but after collaborating with experts in the field, Dr. Urba believes that one year is long enough.  Today was Mark's LAST treatment!  YAHOO!!!  As Mark mentioned in the last post, his odds for complete remission are much better than ever before.  If tumors reoccur, there is a good chance that he will respond positively to the medications he has already taken.  Also, with continual research, new and improved treatments are possible. 

Of course, routine monitoring will continue with regular doctor visits as well as CT scans every 3 months for a while, moving to every 6 months, and then to once a year.  Dr. Urba also trusts that Mark knows his body well enough to detect if anything is amiss.

It will be 6 years this coming February since the first diagnosis, and initially his odds of cure were very small.  How we appreciate all of your support, faith and prayers during our journey!  You have blessed our lives, and we thank you!  We want to give back to those who are going through difficult challenges, and hope that we will be sensitive and aware.  Life is filled with trials of every kind, and our opportunity is to support one another along the path.

We wish you all a very Happy 2018 filled with peace, joy and love!

I'm not sure how to say this...

I just had my first PET scan after starting on this new medication, Keytruda (6 months ago), and it was clean! There are no active cancer tumors. This is the first medication that I have taken that they say could be durable. There was a 6% chance that I would have a complete response. I am in that small percentage!  

Five years ago, when we started this roller-coaster ride, upon hearing the success rates of our few options I was rather discouraged. I told Dr. Urba that I've spent much of my life working with numbers, and I knew that a 3% chance of cure was really a 97% likelihood of death. He came back with, "Yes..., but you could be the one that hits it out of the park!" Well..., he appears to be right. I got the less than 2% response with Zelboraf, Tafinlar and Mekinist, and now the 15% positive response with Keytruda. Keytruda wasn't an option at the time. I feel very blessed.

Dr. Urba told me Monday that the likelihood of durability is higher with a complete response. He indicated that they have a long history (20 years) with IL-2, but not so long with Keytruda, as it is new, maybe some with 3-5 years that were on the early clinicals. But, indications with the other immunotherapies show that there is a greater than 50% chance that it is durable. We have hope that this could be the end of this cancer! What an amazing feeling!! I will continue with the Ketruda infusions every 3 weeks for at least the next 6 months. I will  need to have regular checkups and PET scans for the rest of my life. I will gladly take that option!

We all have a round-trip ticket. I am, as always, in the Lord's hands, nevertheless, those are wonderful hands! The same hands we are all in every day.

Thank you again for all of your good thoughts, faith and prayers. What an amazing journey! I love you all. Moreover, through this, I know that many of you love me. Thank you!

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

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.

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.

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!!

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!

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