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

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

The Tumor is Out!

Surgery was yesterday - Friday, the 16th.   Dr. Diego came in before surgery and told us that he hoped it would take 2-3 hours, but that it could certainly be longer.  It was longer - 5 1/2 hours, but all went well and the tumor was removed!   It took longer than expected because Mark has a large spleen and it took a lot of maneuvering to relocate the pancreas and kidney to get to the adrenal gland. The incision for the removal is only 2 inches long with 3 small incisions for the arms of the robot. 

Last night was a bit rough, but today he is doing marvelously well!  The doctor thought that Mark would be discharged on Monday, but another doctor just left and saw no reason that he couldn't go home later today or at least by tomorrow!  Wow, we are SO thankful for modern medicine! Laparoscopic surgery makes recovery so much easier.  Mark should be back in the game fairly quickly, and he is ready!  

Thank you for all of your faith and prayers!!! 

The morning after!! 

Surgery Scheduled

We met with and were pleased with the surgeon, Dr. Diego Muilenburg. A CT scan was necessary for him to see the details more clearly than the PET showed, and that was done last Saturday, the 3rd.  The tumor has grown 5% in two weeks so while it isn’t growing fast, it is growing, so the sooner it is removed the better.  Dr. Diego has scheduled the daVinci Robotic surgical machine for September 16^th.  The plan is to make 4-5 small laparoscopic incisions, but there will have to be one larger incision to remove the tumor which is currently 2 by 3 inches.  If all goes well Mark should be home in 2-3 days, We’re happy to have daVinci!  Mark just looked at pictures of it online and exclaimed, “Yikes, what was I thinking?!”  I commented that it looked better to me than a big knife held over him!

We will be at Providence Portland Hospital one week from today at 9:00 am.  (Yea, not the early bird check-in!) We feel very good about the way this is working out.  

This verse brought comfort, “…be of good cheer…for I am in your midst, and I have not forsaken you:” We certainly feel that, and also appreciate the love and support from family and friends!  Thank-you!!

Bad News, Good News

On the 11^th of July we met with Dr. Urba.  Since Mark looked so good he saw no reason for a PET scan even though it’s been a year since the last one.  He did have blood drawn, as usual.  Several days later Mark saw the lab results and e-mailed Dr. Urba as the LD total count was bit high. Normal is 100 to 210 and it was 275.  The only other time that has happened was when the tumor was growing in the adrenal gland.  Dr. Urba agreed that it was high but also indicated that this test is not a very accurate or definitive test for metastatic melanoma.  He ordered another blood draw for one month later and indicated that if it was still evaluated we would proceed with a PET scan.  On August 11^th Mark had another blood draw and the count was still elevated and a bit higher than before at 298.  Dr. Urba ordered a PET scan which was done last Friday, the 19^th. 

This morning Dr. Urba called to tell us that the PET scan was not totally clear – a tumor is growing once again in the same adrenal gland. He is a bit baffled as to why that is the only place, but that is GOOD!  The adrenal gland can be removed and studied to determine what may be different.  He has already called one of the best surgeons in the US that deals with this type of cancer surgery and Dr. Vern agreed that removing the adrenal gland would be best.  Dr. Vern is in Tampa, Florida but he recommended a surgeon in Portland whom he personally trained and considers excellent.  Dr. Urba has contacted Dr. Diego Muilenburg.  His office will contact us to schedule an appointment to discuss the next steps and whether the surgery can be laparoscopic or incision. For now Mark will stop using the current medications as he has started having nausea.  He might as well get a rest from the side effects.  We will keep you posted as we learn more.  We are SO grateful that we are not immediately facing the more invasive treatments!  All is well!! 

Four years ago TODAY!!!

Four years ago today as we were celebrating a late Valentine’s Day we found out that Mark had some tumors in his lungs. That day is stamped into our memory, especially the phone call during dinner that he needed a CT scan as soon as possible.  We went right back to the lab for the scan and later in the evening while shopping the call came from our doctor indicating that a biopsy was needed.  Those calls should have put us in high alarm mode, but we were having such a good day that it didn’t affect us much.  It wasn’t until the following day that we grasped the gravity of the situation – that Mark probably didn’t have long to live. 

Well, he is still going strong!  When we saw Dr. Urba this past Monday he indicated that he saw no need for a scan since Mark is feeling and looking so well.  He will stay on the medications and see Dr. Urba again in June.

Dr. Urba summarized for us a report that was recently published indicating that there are a small number of patients who have been on the combination therapy for 5-6 years and are still progression free.  Part of the conclusion was that those who had the most positive responses had less invasive situations. Dr. Urba emphasized that Mark’s diagnosis was as bad as it could get, so his response is highly unusual.  

Today we’re going out to celebrate Valentine’s Day at the same restaurant!  How grateful we are!!!