Second Infusion and feeling better

I had my second infusion yesterday at the Providence Cancer Center. It takes about 4 1/2 hours with two different drugs, blood draws, meeting with our nurse practitioner, etc. So far the only side effect we've noticed is fatigue. So... I slow down a bit and take naps. That I can do!

It seems to me that there is less pain in my hip and shoulder tumors. Maybe the medication is working! I still use my cane to relieve the pressure on my hip joint.  Less pain is a welcome relief!

The tumors we can feel, just below the surface, might be getting smaller. At least they are not getting bigger. We are hopeful.

Thank you for your heartfelt concern, good thoughts, faith and prayers! It's already working!!

Keytruda here we come!!

I had my first infusion Friday. It was 1 1/2  hours of IV feeding with an hour break in the middle. The first hour was the clinical trial drug Galectin Inhibitor and the last 30 minutes was the Keytruda. The most common side effect is fatigue - and I got that! I don't have much energy. I sit and lie around most of the day. I have some occasional nausea, but not too bad. We are hopeful that the fatigue means the immune system is busy taking down the cancerous tumors:-) I also still have the pain from a tumor in my left hip which makes me hobble a bit and pain in my left shoulder and a few other places. My feelings seem a bit tender, too.

I am so grateful for all that I have. I have a wonderful wife that helps and supports me through everything!! I love her so much. I have a delightful family, our children and their spouses and their children are just amazing. My mother and sisters are also so supportive and loving as well as their spouses. I have wonderful supportive friends at church and work - I am so amazingly blessed!! I know why I am here on this earth and where I am going afterwards, and I know that I have a Heavenly Father that loves me and has wonderful plans for me. I am blessed in so many ways!!

I hope you have a wonderful day!

Is this what it feels like to be a real cancer patient?

My first radiation therapy was Friday on a tumor in my spinal column that is pinching nerves and one in my pelvis also causing pain. Afterward the nurse suggested I take an anti-nausea pill "just in case". I did. She left and the doctor came in. After a few minutes I asked her if the nausea side effect was just that or could it turn into vomiting? She said just nausea. A minute or so later I asked if I did have to throw up where would she like me to do it?  She looked at me, as if to say "Really, I just said that wouldn't happen", but she could see I was serious so she handed me a plastic trash can which I promptly filled!

The doctors involved indicated that the pain might get worse before it got better and they were right! I was amazed. Thanks to Oxycodone for pain relief and an anti-nausea medicine along with ginger bread, ginger ale, ginger chicken, etc., we have made it through. I think this must be more like what real cancer patients go through. The past few years I have been blessed with cancer side effects light.

We have one more radiation session this coming Wednesday and start infusions of Keytruda and GR-MD-02, a Galectin Inhibitor - it sounds like a new Star Wars weapon to restrict the inhabitants of the Galectin Star System. Early on we were told that Keytruda was seeing 40% success rates. Which is true: 40% get positive responses to the infusions but only 15% have complete response and something less than that are durable. But, some are durable! We hope to be in that group!!

Thank you for your faith, prayers and good thoughts. We are sending them back to you as well.

With Love, Faith, Hope and Gratitude,
Mark and Ane

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!!!