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!!!

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!

Bigger is not always better...

Our last appointment with Dr. Urba was Monday, June 15^th.  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.