Where did it go? We can't find it!! - by Mark

Our Oncologist confirmed what we thought we saw on the Echocardiogram last Thursday.  The large tumor in the heart is gone!  They can’t see it.  Which means likely every other tumor is gone as well!!  Now he did warn us that echocardiograms are not perfect at seeing things but it can’t be much because it all looked clean to all of us and it was real easy to see before.  The doctor also reminded us that this drug is just a stall and that the cancer will figure out a way around it.  But, this is the best he has ever seen.  He said you are now in the single digits of likely responses to this medication.  He will be showing pictures of my heart before and after at one of his global medical meetings, he was way excited, as were we.

He also reduced the dosage of the Zelboraff 25% to see if he can reduce some of the side effects, which should not hurt the success at all.

Now we are on to schedule an appointment with our cardiologist to see if we can shock the heart back into regular rhythm, as there now is nothing in the heart to break loose and clog the lungs.

Thank you so much for your thoughts, prayers and love.  I believe it has made all the difference.

Love,

Mark

Challenges, but Life is Good - by Mark

More hair loss and skin cancer removals, limited energy but lots of gratitude as we pass the four-month mark since diagnosis.  We have had some wonderful times with our children (a Caribbean cruise), a fun 4^th of July, and yesterday Ane and I celebrated 34 years together.  Life is good and we are happy!!!

The monthly checkup on July 2^nd with Dr. Urba, our Oncologist, was educational but not as encouraging.  His patient that has been on Zelboraf, the medication we are on, for 16 months has just relapsed with lots of cancer of a more aggressive type.  We mentioned that we thought he said there was a potential cure of about 2-3 %.  He looked puzzled and indicated that this drug was just a stall, not a cure.  He also was concerned that if the cancer comes back more aggressively there may not be enough time to do the next treatments, Interleukin II and Yervoy.  He also discussed the clinical trials that were in process with the combined Interleukin II and radiation and said they were not going as well as the pre-trials had indicated.  Additionally, we asked about the new drug that just came out last month and he indicated that it was not a cure either and did not have as good of a response as the Zelboraf, so he wouldn’t recommend it.  All in all, the doctor was upbeat, but clearly not expecting a cure just a bit more time.  That was not as encouraging as the last visit. 

My heart has been in A-Fib or A-Flutter for over 2 months now.  The medications have slowed the pace and helped it be a bit more regular, but have also caused unpleasant side effects and can cause other long-term issues. Dr. Urba would like to shock the heart back into regular rhythm, but that can’t be done unless the tumor is gone.  Next month’s visit will follow another echocardiogram so we can see what has happened inside my heart. 

Good news – I’ve lost the weight that I’ve wanted to lose for a long time!  We’re still following a mostly plant based diet, juicing, and doing whatever we can to be healthy.

We are still hopeful and are pursuing a path of: prepare for the worse and plan and pray for a cure.  We are so grateful for the many prayers and good thoughts that have been offered by you and others.  We believe it has and will make the difference.

Warmly,

Mark

“Slow down you move too fast…” - by Mark

That is what we want my heart to do at least.  So far so good.  We have gone from 140+ beats per minute (BPM) down to about 100 BPM and now in the last few days about 80 BPM.  That is almost normal for me.  It is still irregular but at least slower.  The prayers and meds are working. 

Thank you all for your kind thoughts and prayers.  It is making an amazing difference.  The tumors are shrinking away.  Our oncologist mentioned this last time that 2-3% of Zelboraf patients are actually cured with the medication; previously he had only told us it was a stall drug but with such good results we are all hoping for a cure.

Still A-Flutter - by Ane

We met with the cardiologist today. Mark had another ECG which showed that he is still in A-Flutter which means that the rhythm is steady, but still fast at about 100 beats per minute.  That's slower than it was, so the medicine is helping. (Mark's normal resting rate is around 60.) Dr. Schroeder said that normally when the heart stays this long in A-Flutter the course of action would be to shock the heart back to normal function.  Because of the tumor in his heart that can't be done.  Mark can't take blood thinners which are required for that action, and it's also likely that the heart would revert back to A-Flutter as long as the tumor is there.  Dr. Urba,  the oncologist, also wants to wait until the tumors are gone before we consider that option.  The cardiologist prescribed a larger dose of Metoprolol to slow the heart rate.  The dosage of Amiodarone stayed the same. (That may be what is causing food not to taste good as one of the side effects is bitter taste in the mouth.)

Other than getting tired, Mark is feeling quite well.  As long as he gets his daily nap and doesn't do anything to increase the heart rate, he is good to go!  We asked about exercise and the doctor said that yoga would be good - we'll see if I can get him to do yoga with me! :)