No Tumors in the Brain

Mark had the MRI last Tuesday and found out Wednesday that there are NO tumors in his brain! Yahoo!! Wednesday Dr. Diego removed one of the tumors on his chest for biopsy to help determine the next treatment. 

Today we met with Dr. Urba.  He explained another option that may be available.  There is a current trial which uses a virus injected into a tumor signaling to the immune system what to attack. Yervoy is then given to boost the immune system.  It's a small study, but so far has shown 57% positive response in shrinking tumors, which is a high response rate for any treatment of metatastic melanoma.  Side effects for the injection of the virus are minimul. Yervoy isn't as kind, but is different for every patient. Typical side effects are fatigue, diarrhea, itching and skin rash.  We're studying more about the clinical trial and waiting for the results of the biopsy to determine if Ketruda would be a good option. It depends on the level of PDL1 on the surface of the tumor.  We'd prefer not using Yervoy and Ketruda together as the level of toxicity is much higher.  We hope to have a decision made this week so he can start the treatment soon after Christmas.

The tumor in his lower spine must be hitting a nerve as it is causing pain in his right hip (there is no tumor in that area).  Pain relievers are currently enough to keep him going.  

How grateful we are for Dr. Urba and all those at the Providence Research Center who have been so kind and concerned.  They have truly blessed our lives.  Thank you for your love and prayers!  

Have a wonderful Christmas,
Ane

What a Week!

OK, so the good news is I don’t have any tumors in my feet or critical organs!!

I’ve had some pain in my abdomen for a week that hasn’t gone away so Monday we emailed Dr. Urba.  He scheduled a special, not normal time to meet with us on Tuesday. We got a PET scan on Wednesday in spite of the insurance company refusing to pay for it at the last minute. (Dr. Urba thinks he can get that fixed). Dr. Urba called us before we got home from the scan and said there are lots of little tumors all over. In our second special appointment this week, today, we saw the scans with tumors from my face to my shins, some in soft tissue and others in bone. None in critical organs. It looked like around 20 or so.

An MRI of my brain is scheduled for next Tuesday to be sure nothing is growing there. A biopsy of one of the close to the surface tumors will be done soon to determine if we do anti PD-1 alone or combined therapy with Yervoy. I will likely start with immunotherapy intravenous infusions every two to three weeks for a year or two the week after Christmas. It will likely make me weak and can cause diarrhea and rashes but might not. Everyone is different. The combined therapy is more toxic but can be better depending on what the makeup of the tumors are – that is what the biopsy will tell us. The success rates sound really good with 50% - 60% of patient's tumors shrinking and 40% of patients experiencing durable cures.  Those are much better numbers than it was with the options available when we first started this journey. We will likely still be able to travel and do most of what we get to do now – maybe… a little slower:-)

We are so grateful for each of you and so appreciate your love and support!!  Dr. Urba has been amazing to work with!  Ane has also been so wonderful to be with through all of this.

Warmly,

Mark

Back into the Swing!

Mark is back up to full speed and keeping quite busy, which he much prefers! 

On Monday, the 24th of October, we met with Dr. Urba.  Of course, he was pleased to see Mark looking and feeling so good!  For now, he would like Mark to stay off the drugs and see what happens.  He will have another PET scan after Christmas. If tumors are present we will then discuss the next steps.  Dr. Urba is concerned that the meds he has used for the last 4 ½ years may not continue to work as this last tumor grew while on the drugs.  It may be time to move to the immunotherapy drugs of which there are several options.  The good news with these drugs is that they have the possibility of cure, which the targeted drugs were never meant to do.  The downside is that Mark may not have the quality of life that he has enjoyed. Who knows, though, he may handle them just fine. Either way, that’s a decision for the future. For the time being, Mark is healthy and we are simply enjoying every day that we have together!!!  

Dr. Diego got it all!

We met with him yesterday and he reported clean margins around the tumor from the pathology report.

I am feeling better every day.  I'm up and about most of the day and sleeping well at night.  I haven't used any pain meds for days now.  I still need to be careful what I lift and of course it still hurts a bit.  But overall I have more energy than before with that energy sucking tumor out of me.

We will meet with Dr. Urba in about a month to determine the next steps.  As for now I am off all drugs.

I am so grateful for your faith, caring and prayers and am so glad to be here with you. We are now over four and a half years from the first detection of wide spread cancer!  We have been so blessed to be here for so long.

Love,

Mark