Happy 65th to Mark!!!

Today we are celebrating Mark's 65th Birthday!  He mentioned this morning that the pain helps him feel like he is 65!  :)  Last time we were at the doctor he was asked to rate his pain.  He looked at the chart with all the happy to sad faces and descriptions of each from 1-10.  Number 2 isn't much pain, but the description was "loss of sense of humor".  Mark was aghast!  He couldn't imagine losing his sense of humor at a 2 - maybe a 8 or 9, but definitely not a 2!  He figures his pain level is now about a 6-7, and his sense of humor is still intact!!

Mark has never been one to take pain medications, but he has decided that they are a great blessing! Over the counter drugs are no longer able to alleviate the pain, so he has been taking Oxycodone. Thankfully, it has taken the edge off and allows him to sleep.  Tomorrow we meet with the radiologist to do mapping for radiation to help ease the pain in his hip and adboman caused my tumors in his spine and hip bone.  Afterwards, we will meet with the clinical trial specialist who will give us more information about a different clinical trial that Dr. Urba discussed with us yesterday. This one uses Keytruda, an anti-PD-1 drug.  Mark's biopsy showed high levels of PD-L1 which means this drug has a better chance of showing positive results.  Along with Keytruda, Mark will be given GR-MD-02, a complex carbohydrate made from apple pectin.  Research in the lab suggests that GR-MD-02 given along with pembrolizumab (Keytruda) could more effectively stimulate the immune system to fight cancer cells.  We had been feeling more inclined to use Keytruda instead of Yervoy, so this clinical fits better with what we hoped for.  Mark's first treatment will be sometime next week, and will continue every three weeks as long as it continues to be effective.  We will work out the details tomorrow.

Yesterday as Mark was researching these options, he realized that total cure is still only 15%, but that is so much better than it was a few years ago!  In the past when Mark has pointed out low cure rates to Dr. Urba, he has always been quick to exclaim that he could be the one to hit the ball out of the park!  If past treatments are an indication, that is certainly possible, although we don't believe that would be the case without your faith and prayers, so THANK YOU, THANK YOU, THANK YOU!!!

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