Oh Happy Day! - by Ane

Another clean chest x-ray!  Hurray!!  Mark has been off the Zelboraf for five months now, and there doesn’t appear to be any tumor activity.  He feels GREAT, his hair is growing back in thicker than it was before he lost it, he is gaining weight, and looking younger every day!  Wow, what a blessing.  What a miracle!  Dr. Urba used the word remission today and said unless there are any concerns he will see us in 3 months for a routine check-up.  During the last visit I had mentioned to him that there were MANY people praying for us, and he said emphatically, “Tell them not to stop!”  So, thank you, thank you, thank you!!!

Defying Odds? - by Mark

I’m still here and feeling great!!  We just got back from our Precoa cruise on the Allure of the Seas; what an amazing ship and what wonderful people.  Between family, friends, work and church I have never been told so many times how great it is to see me and how wonderful I look.  It is awesome – everyone should get such treatment, it does wonders for the soul!  I guess it is compared to death or the very ancient, pale, frail, gaunt look I had 6 months ago.  In any case, I feel much loved and am so grateful to be here feeling so good!

Ane and I met with Dr. Urba yesterday – what a wonderful man.  We discussed options and determined to do nothing until late June/early July.  At that time I will get another chest x-ray.  If there is nothing, I suspect we will just keep monitoring.  If there is something growing I will likely go back on Zelboraf. Recent studies in mice show that starting and stopping this medication does prolong the life of the four legged little creatures so it is assumed it will work the same in humans.  Dr. Urba is not encouraging Yervoy at this point because I am doing so well and my quality of life will not be the same on this treatment.  He even indicated that I could be the one that each oncologist seems to have that defy all the odds and are healed, when according to medicine they shouldn’t be.  We would be OK with that! 

I have had some heart palpitations over the past couple of months so Dr. Zemsky, the heart electrician, had me wear a heart monitor for a couple of days.  He just emailed and said: “Your Holter monitor showed some short episodes of arrhythmia, lasting seconds.  These are not concerning, and are likely what you're experiencing during palpitations.”  So… we don’t need to sweat it.  Just keep enjoying life.

With so many faith filled prayers heading our way – I just may be the one to defy the odds.  Thank you so much for your faith, prayers and healing thoughts!!  I feel great!

Still clean! - by Mark

The x-ray we took last Friday looks the same as before with no tumor growth, just some leftover tissue doing nothing. Hurrah! Still tumor free.

I asked Dr. Urba how long do patients usually go before the tumors start growing back?  He said, they don't know.  Usually, they don't go away. Of those that do there are not enough to draw any conclusions.  Those that have had them come back have been months but there are so few.  The drug is new; those who's tumors shrink to nothing is rare and the idea of stopping and then restarting is even newer, so we are on the very cutting edge of treatment and don't have a clue.

The side effects are slowly going away.  My hair is still very curly (kinky/frizzy) but actually lays down, a bit.  The joint pains are gradually going away and the skin growths are slowing down.  I am gaining weight again and food tastes great.  I am still on the nutritious diet and will be forever:-)  I actually quite like it now.

We will be on the company cruise in April and so look forward to being with our Precoa friends again.

It is all of your love, faith and prayers and the blessings of heaven that have extended my life.  Now every day is a bonus day, a day for loving, learning, sharing and serving and always another day of gratitude!!

Love forever,
Mark

Decisions, Decisions! - by Ane (& Mark)

The problem with going to the Oncologist is that it all becomes real again.  Mark is doing so well, it seems like the cancer is gone; we dogged that bullet and away we go with life.  But our Doc brings us back to reality and we have to make life or death decisions or ones that could have that kind of impact.

Yesterday was our 6 week check up with Dr. Urba.  Since Mark is doing so incredibly well the doctor doesn’t think that we need to hurry to start the Yervoy.  We might as well enjoy our time of Mark feeling so good! 

The protocol for Yervoy (ipilimumab) is a 90 minute outpatient intravenous injection every 3 weeks with a total of 4 injections.  We had thought that he would start the Yervoy in a few weeks, taking one or two doses before our company trip the end of April and the rest after, but we learned yesterday that the side effects can be very serious. We need to be close to good medical facilities during the duration of the treatment. 

We had lots of questions, i.e. “Does the drug work if there are no tumors? Is it better to wait until they start to grow?”  Dr. Urba told us that there are NO answers to these questions.  This is the ART of medicine because we are on the cutting edge.  There is no real science yet until more research is done - which is in progress.  He did indicate that side effects tend to be worse with less tumor activity which gives us another reason to postpone starting the drug.  Also, if there is some tumor activity it is possible to determine if the drug is working.  

Of course, we are anxious to know if any tumors are growing so Dr. Urba ordered a chest X-ray.  It’s the least invasive.  PET and CT scans cannot be done so often.  Mark can get the X-ray whenever we are ready.  Since it’s only been 5 weeks since the PET scan we feel inclined to wait at least a few weeks before we expose him to more radiation.  Also, we want to move it closer to the trip.  If tumors show up we will decide whether to start the drug right away or wait until right after the trip. It depends on their size and rate of growth.  If there are no tumors we will rejoice once again! 

So for now we are doing nothing medically, but we can enjoy every minute we have together, and we are doing just that!