Bad News, Good News

On the 11^th 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 11^th 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 19^th. 

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!! 

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!!! 

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!!!

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!!!