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.

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 its job again.  We have SO much to be thankful for!!!

Back in Rhythm - by Ane

Mark's sinus rhythm returned to normal a day or so ago with the help of heart meds. An ECG yesterday and contact with Dr. Zemsky today confirmed that he's back in sync.   As long as there are no glitches there will be no need for the cardioversion.  Yea!  He'll likely have to stay on the heart meds that regulate the rhythm, but he can get off the beta blocker which will allow him to return to regular activities without getting so tired.  He can hardly contain himself with this nice weather - there's work to be done in the yard and he's anxious to get to it!

My Beating Heart - by Mark

We met with Dr. Zemsky yesterday and found out that my heart is most likely in atrial-fibrillation instead of atrial-flutter although it is hard to tell for sure. (A-fib is in the left atrium whereas A-flutter is in the right.) The treatment plan is:

1.       Stay on Metoprolol until the heart gets back into sinus rhythm.

2.       Start to thin the blood tonight with Coumadin (Warfarin) and monitor carefully to get it to just the right level over the next 3-4 weeks in preparation for a cardioversion.

3.       Do a stress test this Friday to determine the right kind of medication to put me on to try to medicate the heart back into rhythm.

4.       Start the rhythm correction medication right after the stress test results.

5.       Do the cardioversion on March 6th unless the heart has gone back into sinus rhythm with the meds or on its own (not likely).

6.       If the heart stays in rhythm then off the Coumadin nine weeks after the cardioversion.

7.       If the heart stays in rhythm until September, see if it will stick without the rhythm medication.

8.      If the heart does NOT stay in rhythm after the cardioversion it is possible to have a catheter ablation on the left side of the heart. This procedure has more risk than the one for A-flutter and may not work as well, but is certainly an option.  

So...here we go!! This is all fairly routine so there are no big concerns. We do appreciate your care and concern.

Warmly,

Mark

A Racing Heart - by Ane

Friday night after Mark was out playing with some of the grandkid he came in feeling light-headed and faint.  He checked his heart rate and it was close to 140 and didn't return to normal after resting. Saturday morning it was still high so he e-mailed the oncologist and the electrophysiologist who had done Mark's catheter ablation. Right away he heard back from Dr. Urba (he is truly amazing!).  He, of course, would defer to the heart doctor, but if we didn't hear anything Mark was to take it easy.  If his resting rate got over 140 Mark was to go to the ER.  If Mark did much of anything it would get close to 140, so he had to lay low all week-end.

This morning we had a previously scheduled appointment with Dr. Urba.  Before we left the house we tried to get an appointment for today with a cardiologist, any cardiologist in the Providence system, with no success.  We particularly wanted to see Dr. Zemsky since he was the electrophysiologist that did Mark’s catheter ablation.  The earliest appointment  we could get with him was March 2^nd.  Fortunately, Dr. Urba has more clout than we do! J  While we were with Dr. Urba Mark had an EKG.  Dr. Urba got the results and called Dr. Zemsky’s office.   Before we even got home Dr. Zemsky’s medical partner called us, and then called in a prescription of Metoporlol. Mark now has an echocardiogram scheduled for the 9th and an appointment with Dr. Zemsky on the 11th. Wow, how thankful we are that Mark already had the appointment with Dr. Urba this morning so he could get the ball rolling!  

With the medication Mark's resting heart rate is fluctuating between 75-95. His normal resting rate is 60.  While it's not back to normal he feels so much better and isn't in danger of a stroke.  Hopefully he will be able to have another catheter ablation.  We’ll know more next week after we meet with Dr. Zemsky and find out why this has happened. We’re not worried.  Mark just hates to have to slow down! J  

Interview with Mark on KGW honoring Dr. Walter Urba - by Ane

Last week a friend told us that we had recently been on KGW-TV.  Curious, we checked with Providence to see if the interview Mark had done with KGW several months ago had been aired.  It had!  Initially the video had been used on October 5 at an Oregon Historical Society dinner where Dr. Walter Urba was honored as an Oregon History Maker.  Mark's comments were used extensively. It was easy for him to share our experiences with Dr. Urba -- he is remarkable and most deserving of this honor. Thomas and Annie happened to be there the day of the interview, so we were all filmed playing in our backyard.

http://www.providenceoregon.org/video/?view=62b230342e5dbx480x293

Happy New Year!!! - by Ane

We hope you have had a very Merry Christmas and we wish you a Happy New Year!!!  

This year we did not send Christmas cards, yet, we do want to express our appreciation for your love and support! To all who sent Christmas greetings our way, thanks.  It's delightful to hear from you.  

I asked Mark what I should say on this blog.  He was quick to say that he was thankful for enjoying yet another Christmas here - his 3^rd bonus Christmas!  

He has been off the cancer drugs for over three weeks.  The minor side effects have subsided. The only downside is that he gains weight much more quickly when he's off the drugs.  So…it's back to a more healthy diet – for both of us!  

Our next appointment with Dr. Urba is February 2^nd, so we will add another post then. 

Enjoy this wonderful New Year!!!